my new islets

Type 1 Diabetes Reversed With Stem Cells From Cord Blood

2012-01-25T06:45:00.000-05:00

Type 1 Diabetes Reversed With Stem Cells From Cord Blood

This study has me really excited. It is a study involving the re-education of immune cells by introducing cord blood stem cells to a sample of the patient's blood. This is done outside of the patient's body and the "smart" blood is returned. The goal is for the immune system to stop attacking the beta cells and for the patient to begin making some insulin.

The study compared patients who make no insulin, patients who were still making some insulin and a third placebo group that did not receive the cord blood stem cells.

The results were that the patients who received the treatment had a decrease in A1c and insulin requirements and an increased C-peptide. Thats both groups, the patients with some or no beta cell function to begin and those with some beta cell function.

The placebo group showed no change in any of these measurements.

This is really nice. The C-peptide is the exciting part. Insulin and A1c can be manipulated with more aggressive diet and exercise, but not the C-peptide. That shows an intrinsic change. It shows that this works.

Its also interesting to me because the group with no beta cell function was brought to about the same C-peptide value that I currently have which is about 0.5. This is much lower than I was at about a year post transplant. I was usually over 1.0. But, physically it is a giant step away from 0 C-peptide which is where I was pre-transplant. I still feel just as good, I just have to take a few shots. I must be healthier.

I'll be following this study closely. They are hoping to start clinical trials on this soon in Japan.

As for me, I had good news at my endo appt. last week. My A1c is down to 5.8. This is fantastic. My previous one was 6.5. I was hoping to just be lower than that, so this is a pleasant surprise. As I mentioned above, its probably due to my very aggressive diet, exercise and insulin use, but thats ok. High BGs are toxic to my precious islets, so I try to avoid them. I'm really hoping to stay where I am for as long as I can. Or until the next best thing comes along like this study.

We just got back from a trip to California for a belated White Christmas. We had a great time.

Diabetes and Microbiology and dogs

2012-01-03T14:43:00.001-05:00

After getting all excited about combining diabetes and dogs, now I see that diabetes has found a connection with microbiology. This article came out today in DiabetesCare.net. A group of students at the University of Missouri found that they could measure blood sugar using bacteria that have an ability to glow in the presence of glucose. They found that the amount of glucose was in direct proportion to the amount of glow created by the bacteria. They are hoping that this might be used in test strips in the future. Bacteria are already used for their ability to create drugs and other useful chemicals. They are cheap, numerous and there is no moral issues with their use (that I am aware of). I'll be following this research.

In other news, Senator, the dog I was fostering for the Assistance Dogs of America, Inc. was diagnosed with hip dysplasia. So, I am going to try to train him to become a Diabetes Alert Dog. I really like the idea of giving him this second chance. It makes us two of a kind.

I'm in the process of creating another blog to keep track of his training.

My Story in A Sweet Life

2011-12-26T10:01:00.000-05:00

I recently had the honor of having my story as a feature on the online magazine A Sweet Life.

Here is the article. It came about by me contacting them and asking if they would write about the end of the Islet Cell Transplant clinical trial and through discussions and editing it evolved into this nice story about my experience. It was a real learning experience and inspired some real soul searching. They are my favorite magazine and I like both what they cover and how they write about it.

Writing the story made me stop and really think about what all of this means to me and how it has affected my life from so many directions. Obviously, my health is greatly improved. I am free from the constant worrying about going low, and getting up at night to check, and all of the countless other details of dealing with Type 1 continuously.

My experience has inspired me to become much more active in the diabetes community. This blog, the islet cell recipient facebook page, advocating for the JDRF, all have me feeling very connected. The hard part is the feelings I have about the disease itself. Type 1 is just a bad thing. There is nothing good about it. It just breaks my heart to think about kids still dealing with it. I sometimes find myself very overwhelmed with wanting to help them and any Type 1 to escape from its clutches and fate. My present situation of having lived with Type 1 in the past, and possibly in the future, can become very emotional. I feel extremely lucky for myself, but sometimes its hard not to feel a little guilty about those I feel I have somehow left behind.

My present situation is good. My kidney function tests are in line. No side effects from the immunsuppression. Feeling good, and again no worries of lows. My insomnia seems worse, but hopefully now that Christmas is over, that will subside.

My current concerns. I've had one cold already this season. It seems to have cleared on its own which is good. My BGs have been out of line(probably due to the cold). I have increased to 9 units of Lantus/day, but hope to go back to 8 when the cold is completely gone.

Here are some pictures of our pre-Christmas trip to Florida. I think I got my cold on the plane trip. It was worth it.

Manitees

Kudos to the JDRF!

2011-12-15T16:14:00.000-05:00

I have been reading that the JDRF will be funding Viacyte, a company that is using pluripotent stem cells to treat diabetes. In addition they are encapsulating the cells to protect them from the immune system so that immunosuppression is not necessary. Read the press release here.

This news is exciting to me because it combines three of the options that I feel will lead directly to the cure. Islet cell transplants, stem cells, and encapsulation. If they would use pig islet cells, that would be a fourth! I posted this back in June of 2010 about my ideas of where the cure would come from. I support the JDRF wholeheartedly because of decisions like this. Their purpose is to find a cure and they are very aggressive in what they decide to support.

I like the new logo too!

My New Normal?

2011-12-06T19:31:00.000-05:00

I know a few family members and friends would like to have a heyday with that title. But, I do have SOME normal aspects.

I saw the nephrologist for my follow up appointment last week. It has been 3 months since my initial visit and she had ordered some tests in between. Overall, she says that everything looks good. My renal ultrasound was normal. My 24 hr urine was normal. My sodium was just a little high, but no higher than before. My creatinine was 1.1 this time, which is the same as 3 months ago, but still on a slow increase. I asked her about this, and she said that its not really high enough to be of concern. I must have been worrying about this, because I felt very relieved to hear her say that. She says that the increased values are most likely due to my immunosuppression and bactrim. Its a side effect.

This seems to be a common thread among my current abnormal lab results. I used to have low cholesterol, low blood pressure, and normal everything that was non-diabetes related. Now, not so much. When I ask about dietary changes, the answers are similar as well. Watching fat will help my cholesterol. Watching salt and potassium, might help with my blood pressure and kidney function. BUT, it wouldn't be enough in any of these instances. I have to take additional medication to balance the effects of the immunosuppression. My normals have shifted. I can handle that. None of the new medications have any side effects at all. Just more pills which I am used to by now.

When the nephrologist saw on my chart that I had mentioned ankle swelling, she took a look at my ankles. They were indeed swollen and she prescribed a diuretic. Again, no symptoms. Its only been a few days, but there does seem to be less swelling. I always thought my ankles were too skinny, but I am alway glad to see them back the way they belong.

My immunosuppressant levels have been inconsistent lately. My Rapamune is now up to 10mg/day and Prograf is down to 10mg/day.

I was contacted by John Parkinson at DiabetesCare.net to do an article about my transplant story. He interviewed me over the phone, and the interview is here. I've visited this site many times and use it as a resource for news articles on diabetes topics. I am pleased with the article and the chance to share my message here.

I just returned from a great trip to California to visit the kids. My Mom and I had a wonderful time and the kids all seem to be doing fine and having a great time. I only wish it wasn't so far.

World Diabetes Day and the DOC

2011-11-14T06:32:00.000-05:00

November is Diabetes awareness month, and Nov. 14th is World Diabetes Day. There is a lot of celebrating and complaining within the ranks about diabetes and its many and varied issues.

Its a big deal on line, but from what I can see, not so much in the real world. Diabetes is really a hidden disease. Not many people know very much about it. There are several reasons for this. Diabetes has two types. And over 90% are Type 2s. That means that most people who even know a diabetic personally, know a Type 2. And, although there are similarities, the gulf between our treatments and the challenges we face is massive. And, from my experiences, Type 1s are mostly very private about their disease. Ironically, the times that we need the most help and attention is the same time that we feel very removed and depleted. We just want to be left alone until we feel capable of speaking intelligently. At that point, we prefer to walk away and get back to what we were doing when the low struck and interrupted our day. This scene does not serve to educate the people around us.

In an attempt at a real shout out to the public, the JDRF took out a full page ad in the New York Times an attractive picture of a cute child and a chilling statistic. The caption reads that "Piper has Type 1 diabetes. One in twenty people like Piper will die from low blood sugar." I have been reading about this online, and the statistic is valid. Its awful that parents have to see this, but I can understand why the JDRF has decided to go this route. It really is time to get this message across. The artificial pancreas project is pushing for FDA approval and if it does all its supposed to, it should lower this number. The strong point of the APP is that it will have the ability to turn off the pump if it detects a low blood sugar. I'm not a big fan of the APP, but this feature would be nice. It would allow for better sleep for diabetics and their parents.

The DOC, Diabetes Online Community has become important to me. There exists an entire network of diabetics who have found each other online. I found it about 5 or 6 years ago when I was learning about Symlin, the new drug I was trying out to supplement my insulin. There were a few people blogging about their experiences with it. It helped to encourage me to keep trying and that the nausea and horrible lows would both become manageable. Now, I use the DOC to stay in touch with what is going on in research, in the JDRF, in advocacy, and now in diabetes alert dogs. It is a useful tool and can be both encouraging and nurturing. Just like any group who have one thing in common, we are a mixed bag of people. but that makes it interesting and effective.

And sadly, I would not even be aware that it is World Diabetes Day, or even month if not for the DOC.

JDRF walk 2011 and TrialNet

2011-11-04T18:42:00.000-04:00

My JDRF walk for this year was again fun and successful. I had 17 people at the walk and many others who couldn't participate in the walk, but gave generous donations. It was a warm and sunny day which makes a walk along Lake Erie a real pleasure.

Before the walk began, I wandered along the booth and education area and came across a TrialNet study. I had heard of this before, but didn't know exactly what it was. Its actually very simple. Its a blood test that can help determine if the relative of a Type 1 diabetic has antibodies that can cause diabetes. Four antibodies are tested for. The more a person has, the more likely they are to develop diabetes. I called Cassie and Becky over to be tested. They had their blood drawn and it was sent to a test lab.

The results came back a few days ago. Both girls had good results. They had 0 of the 4 antibodies which is the best possible result. It was a relief for me. Especially for Becky. She had mononucleosis in 6th grade. I had mono in high school and it was soon after that that I developed symptoms of diabetes. It can never really be known for sure, what causes a specific case, but mono is one of the most likely culprits.

Gary is in the process of having this test done as well and I'm hoping he will have the same good news.

My health has been good, but with some worries lately. My creatinine has increased to 1.1 which is the highest its been. I'm still getting some ankle swelling and am thirsty all morning. I see the nephrologist at the end of this month and am hoping for a good report. I think that if the worry factor was decreased, I wouldn't notice the other things so much. After my initial visit, I was told that my results were nothing to worry about. I will be drawn again in a few weeks and the results will be compared to the initial tests.

I have also had some stomach symptoms. Twice now, I have had an upset and irritated feeling stomach that has lasted several days. Its hard not to blame the immunosuppression, but since it has cleared up on its own, I am thinking it wasn't the pills. I have been very busy lately, and am wondering if the stress of that was causing my stomach to react.

My cholesterol and LDL have been higher. Cholesterol 227 and LDL 127. I'm expecting an increase in my statin the next time I see my endo.

None of these things has any uncomfortable symptoms, so I am still feeling good. My BGs have been good lately. I have increased my Lantus to 8 units/day and now can get away with not taking any Novolog with dinner on some days.

The Senator is doing well. His barking is better with few relapses. He has been doing really well on our outings. He's very attentive to me and not as easily distracted.

Becky, left for California last week. They drove and will be living with Cassie for a week or so until they find an apartment near where she will be working in San diego. Again, I was happy and proud for her to be able to do this, but sad for us. We really miss her. And Senator is missing Callie. I already have a trip planned for a visit next month. :)

Islet Cell Transplant study completed - the good news/bad news

2011-10-08T08:36:00.000-04:00

As I mentioned in my previous post, the islet cell transplant study that has been ongoing for several years has been completed. The centers who make up the Clinical Islet Transplant Consortium have transplanted the needed 48 patients and now the study is closed. That is certainly the good news. It is a great coup for all the scientists and staff who have worked so hard to get this accomplished. The data will be collected and submitted to the FDA for approval. WHEN this occurs, islet cell transplants will become standard treatment for diabetics who can benefit from this type of intervention. Of course, insurance coverage will be another battle, but thats a separate topic. The estimated date is 2013, which is just amazing. I'm going to look into the possibility of pelting the FDA with success stories from the islet cell transplant patients that I have met. I don't think I would have to twist any arms to get them. We're a very happy group.

So, how could there be any bad side to this? Its the human element. The patients who have invested their time, money, and most importantly their hopes in the process of qualifying for an islet cell transplant, only to get a call saying that the program is over/closed. There are several on the Pancreatic Islet Cell Recipients facebook page. My heart really goes out to them. I would have been devastated to have received one of those calls after I had been waiting for THE call. I know this is an unavoidable situation in the process, but I need to recognize it. Its really hit me hard.

the Senator at 10 months

It sounds like there might be some hope for getting a transplant before they are made available to the public. During the Transplant Symposium, Dr. Hering mentioned that through a program called "expanded access", patients with more extreme need, may be able to receive a transplant. The webcast from the Transplant Symposium is available now and here is the link. He talks about the process of the trial, submission to the FDA, and this expanded access possibility at about 1:18min. into the program. Its very heartwarming to see him smile when the applause erupts about the possibilities he has created

I also asked what the patients at the SDI are being told when they get the calls as to what they can do. It seems that the clinical trials.gov site is a good place to search for any current islet cell transplant trials. At the SDI, they are not enrolling for current transplant studies, but will hold a patient's information for use in any future trials. Also, they are still performing islet cell after kidney transplants.The webcast, like the Symposium itself is very interesting and fun to watch. I noticed a few things that I had missed the first time. It is a very upbeat and informative session. I still have yet to read anything on line as to the completion of the transplant trials. I'm disappointed in my google alerts and in the lack of any press of this monumental achievement.

Diabetes Symposium experience

2011-10-01T13:37:00.002-04:00

The recipients and a diabetes alert dog

The Diabetes Symposium was held in Minneapolis on Tuesday evening. It was an exciting and emotional experience for me. I'm still waiting for the video of the session to be released, and will post it when it becomes available. The Minnesota Medical Foundation has a link to Fox News and parts of the program here.

I arrived in Minneapolis on Tuesday afternoon. My friend, Camille, picked my up at the airport and I stayed with her while I was there. Spending time with her and her husband Geoff, was a very nice part of my trip.

The Symposium was held at the Best Buy headquarters. A local Fox reporter who is a Type 1 diabetic was the MC. Richard Schulze is the founder of Best Buy and a huge supporter of diabetes research. The Schulze Diabetes Institute is named for him. It was an impressive building (lots of blue). Just as we arrived, Janet, my retired nurse coordinator walked in. I was able to sit with her and chat before the program began which was an added bonus. There were about 450 people who attended the event and it had to spill over into an auxiliary room.

There were a few surprises in store for me. Inside the folder that we were given as we walked in was the story that the Diabetes Research and Wellness Foundation did about my transplant as well as the nice picture of Dr. Hering and me. I was just getting over that surprise when the program began. It started with the video of the interview that Dr. Hering and I did in Washington DC at the previous Diabetes Summit. That was a shock to see in larger than life form as well!

The format of the program was for the eight recipients to tell of their experiences with diabetes both before and after the transplant. Its getting very difficult for me to hear those before stories. It brings back so many uncomfortable memories of my seemingly previous life. In addition, there were questions that people had submitted on line as well as some live questions for the patients and Dr. Hering.

One of the highlights of the evening for me was when Dr Hering answered a question about when islet cell transplants might be available for everyone. He began to tell of how the main transplant study was just completed last week which involved the centers in the Clinical Islet Transplant Consortium. They had transplanted the targeted number of recipients and that the trial was closed except for collecting the data from the more recent transplant recipients. In a year, when all the data is completed, it will be submitted to the FDA for approval. If/When the FDA approves it, it will become available. He projected that as happening in 2013. I'm not sure how the insurance coverage will work with that. I'm guessing that that will be another battle. But, it is a giant step in the right direction.

Another issue that Dr. Hering spoke of is the fact that so many people see the immunosuppression as a deal breaker in having an islet cell transplant. He gave his views on this which are that he doesn't feel that this should be the case. The immunosuppression isn't perfect, but it is less problematic than uncontrolled diabetes. I hope that many people will hear this message. Its the most common question I hear or read about the procedure.

The recipients ranged from about 6 months post-transplant to 10 years. Most were insulin free. Greg had his diabetes service dog with him which was very interesting to me. He told of how the dog saved his life at least once by alerting him of a low. Melissa stated how she never realized how sick she was until after the transplant when she was able to feel so good and healthy. Most had stories that involved the paramedics and some had experienced seizures. One of the questions that was answered by each person was whether they would do this again. It was a unanimous "yes". Another common thread was of the families' involvement with the disease. Many had to rely on their children to understand the limitations of their parents and to have to physically help them at times. Having lows at work and having to depend on the assistance of coworkers was something mentioned by several people. All of them suffered with hypoglycemia unawareness.

All of the recipients and doctors

I had a different perspective for this Symposium as a member of the audience. I couldn't help thinking about the people that I was sitting with and wondering what they must be feeling. I worry that the parents of diabetics, like Camille, feel very sad when they hear how much better the daily lives are of the patients after the transplant. It must seem so unfair to think that your child is suffering with this disease with no immediate relief available. I think of the other adult Type 1s who can hear how wonderful it is to be free of the worry of having lows. Its probably very difficult to even imagine and, as I remember, almost painful to hope for. I know thats why everyone is here, but what is being offered here is not something they can physically take home with them. I think it was probably hard to turn around and walk out the door leaving all of this behind.

I hope that hearing all of these stories was very rewarding to the doctors and staff of the SDI. I don't think that they can hear often enough what an impact their work has on the lives of their patients.

I didn't attempt to summarize the stories of the recipients. I will post the video when it becomes available so that people can hear for themselves. They were all very moving. I don't think there were many dry eyes in the place.

Diabetes Symposium in Minneapolis

2011-09-15T16:56:00.000-04:00

The Diabetes Symposium is being held in Minneapolis this year. It will be very similar to the Transplant Summit that was held in Bethesda last November. There will be eight islet cell transplant recipients present to tell their stories. Dr. Hering will speak about islet cell transplants and Dr. Firpo will speak about her stem cell research for diabetes. It will again be a great place to learn more about what is happening in diabetes research research for the cure. I'm looking forward to seeing all of the Minneapolis SDI friends that I have made in the last three years. It will also be fun to meet some more recipients in person. I'll write all about it afterwards.

On the homefront, I just heard back from the nurse at the Nephrologist's office. She told me that my labs came back ok. I have a small amount of protein in my urine and my sodium is slightly lower than normal, but everything else looks fine. I'm scheduled to have a renal ultrasound on Monday and I will have some more lab tests run before my appt in November to compare with these. So, I won't be worrying about this.

I picked up my new foster Assistance dog on Thursday. His name is Senator and he seems like a very nice dog. He looks a lot like Dolly which was hard at first, but now we're getting used to having a new dog. He has a different personality than Dolly. He's not so afraid of things and not so inclined to jump on people. He does have his own set of issues however. He can be a barker at times which is totally unacceptable for an Assistance dog. He barks with a high pitch bark when he wants Callie to play or something from us. That is acceptable for now. However, he also barks at things outside with a lower pitched bark. This is not acceptable. We're working on this and he might be getting a bark collar which sprays citronella when he barks. Its actually kind of interesting to have a new set of problems. I get to learn a wider cross section of training. Part of getting him to quit barking might involve training him to bark on command and then training him to stop. Cool stuff. I didn't realize how much I would enjoy the learning aspect of training a dog. Its a science in itself.

The Senator and Callie are already buddies. And Callie is still the boss.

JDRF Promise meeting

2011-09-01T09:59:00.001-04:00

Angel, Lara, Lori, Me, Rep. Latta

I had a JDRF Promise to Remember Me meeting yesterday with my State Representative Bob Latta. It was again a very pleasant and rewarding experience. I was very pleased with his response to our stories. He asked some very insightful questions and seemed truly interested in what we had to say.

I had three people with me for the meeting. Lana spoke about her experience with having a daughter who is now 4, but was diagnosed with Type 1 at 2 years old. Angel and her Mom, Lori told of her experiences growing up with diabetes. She was diagnosed at age 3.

Lara spoke first and told of having to be available constantly to monitor her daughter Addison's blood sugars. It was difficult to work or to get away with her husband or to get a good night's sleep. She told about how she could tell when Addison was low because her activity level decreased dramatically. It was an emotional story about a situation that seems so unfair on so many levels.

Angel is a college student and had organized her thoughts on paper. She started reading from her notes about difficult aspects of her life with diabetes. Rep. Latta interrupted her with questions that brought out some very interesting stories about how hard she would try to keep her blood sugars under control, but how impossible it seemed to be. She talked about her dismay with her high A1c and tried to explain what that was and what the implications are of having it be too high. She spoke about how hard she tried to lead a normal life, but how diabetes makes that difficult. She also spoke of how hard it is to tell people about her diabetes. As a college student, she can't rely so much on her parents and needs to rely more on roommates and friends. That is difficult at her age when independence is everything. Rep Latta asked her several questions throughout her talk and I'm not sure she ever made it back to her prepared speech. But that, I think is a good thing in that it brought out some interesting situations. She was very compelling as was Lara.

I knew we were running out of time. We were supposed to hold our meeting to 15 to 20 minutes. So I only mentioned that I used to be just like Addison and Angel. Until my transplant. Rep Latta was very interested in the transplant process and how the FDA would be involved in getting this approved for all diabetics. We talked about the surgery and the results. I explained how I had two years with no insulin, but that most people get at least 5 years. That the research was indeed moving forward. I mentioned the article about the cost-effectiveness of islet cell transplants vs. insulin therapy. He told us that he is on a Healthcare committee and comes across questions like this. He asked for some more information so that he can better understand it and be prepared to discuss this if it comes up. This, of course, got me very excited to tell more about it. I also promised to send more information to his office. He was also interested in the insulin pump and continuous glucose monitor. I explained how they work, some of the mechanics, and how they are attached to the patient.

Between my interesting partners and Rep. Latta's involvement in our discussions, it was a very pleasant and successful meeting.

Gathering my thoughts

2011-08-27T09:18:00.000-04:00

I seem to be right in the middle of so many projects right now. Some diabetes related and some not. Writing them down can be therapeutic and help me set and see some priorities.

ADVOCACY
I am trying to organize two Promise to Remember Me meetings with Ohio congressmen.
I was able to get a meeting date for my own local representative, Bob Latta. It will be on Tuesday afternoon. I have a college student and hopefully a younger child attending with me. We will all tell our own diabetes stories and I will leave an information packet.

I'm also trying to get a Promise meeting with Speaker Boehner who is from the Dayton area. After several calls and emails, I still don't have a meeting set. I'll just have to be persistent.

I'm busy getting my JDRF walk organized. The email system of communication is convenient, but too easy to ignore. I think I have a day of making phone calls ahead of me in gathering my troops. That's in 3 weeks.

I will be going back to Minnesota! for a Transplant Symposium. Dr. Hering told me about it at my visit last month. I've been waiting to see it in print before I start preparing and buying a plane ticket. I finally have seen a brochure, so am starting to think about what I want to say this time. Needless to say, I am very excited.

HEALTH
I have my appointment with the nephrologist right after my meeting with Congressman Latta on Tuesday. I am more curious than worried about this. When my endo increased my dose of Lisinopril (BP medicine), the ankle swelling went away. My biggest fear is being told that I now have to limit my protein intake. I'm already limiting carbs and fats and am too thin.

Renae called on Thursday to tell me that my monthly lab draw showed that my level of Tacrolimus was very low. We're hoping it is a fluke or lab error and I had it redrawn yesterday.

My BGs have been fluctuating more lately. Since my last A1c and C-peptide results, my new strategy is to just increase my insulin. Its frustrating, but works. Yesterday was better, so hopefully I'm getting back to normal. My sleeping habits have not been good lately, probably due to some of the above and below. That can effect BGs.

Still working on getting a continuous glucose monitor. I need to call my endo to see if he has submitted his letter yet. I want to tell him about the Diabetes Symposium too.

GOODBYES

On Monday evening, Cassie left for California. She and a friend made the trip across the country. They arrived in Sacramento on Thursday where Cassie is in a friend's wedding. They will leave there on Sunday to visit Gary in Santa Barbara and then make their way back to San diego.

Dolly was released from the Assistance Dog program. She just couldn't get past her fear behaviors. We had her for about 10 days until a family was found to adopt her. We said goodbye to her on Thursday morning. It was very emotional for all of us. We really miss her.

I have decided that I want to try training another dog. It was suggested that I try an older dog this time because I won't be having as much help at home now.

We have a nice weekend planned. Nothing for today and a trip to Put in Bay with some friends tomorrow. Sounds about perfect.

C-peptide and a visit to my endo

2011-08-04T18:46:00.001-04:00

I have to comment on my C-peptide on a separate post. I just put the results on the previous one and I am really excited to see that they have increased since the last time they were measured.

To compare: at 2 1/2 years, Fasting C-peptide was 0.66 At 3 years it is 0.94
at 2 1/2 years, Post-prandial C-peptide was 1.39 At 3 years it is 2.20

My C-peptide has been steadily decreasing over the last few visits, so this is very encouraging to see. It could just be due to the fact that C-peptide is difficult to accurately measure, but I'm still happy to see that I could still be this high.

My A1c has decreased during this time period too. At 2 1/2 years it was 6.4. Now, at 3 years it is 6.0

I have been more aggressive lately with using insulin. I have been taking 7 units of Lantus instead of 6 and usually taking 1 unit of Novolog with each meal. Sometimes I can still skip the suppertime dose if I am sure I will be getting some exercise.

I saw my endocrinologist this week. He was pleased with my A1c and excited as I was with my C-peptides. I asked him what he thought the reason for the increase might be. I was trying to get him to say the regeneration word, but he thinks its due to the increased insulin and therefore decreased stress on the islets. All I know is that I plan to keep on using the higher doses of insulin.

The bad news at this appointment was that my blood pressure was up. It was 140/90 which is higher than I have ever been. So he increased my dose of Lisinopril. He was also concerned with some of the kidney function tests that I had done in Minneapolis. He is repeating a few of them. I see a nephrologist at the end of the month, so the followup should help him get a better picture. I am still getting some ankle swelling during the day.

It sure seems like one thing leads to another, but that does keep it interesting.
In the meantime, I am working on setting up two JDRF Promise meetings and starting to plan for my JDRF walk next month.

Islet cell transplant - 3 years 7/21/11

2011-07-21T22:26:00.002-04:00

Today is the third anniversary of my islet cell transplant. We returned home last night from my visit to Minneapolis for my yearly testing. We had a fantastic trip. Both the clinic visit and the getting together with the people that I have met during this amazing event in my life were very rewarding and memorable. It was my last clinic visit which was a very sad thought. I have really enjoyed each and every trip that I have made up there. There were 16 visits all together. The initial screening tests, the signing of the consent form, 12 post transplant clinic visits, and 2 visits for the hypoglycemic unawareness study. The traveling could be very frustrating, but the visits more than made up for it.
Looking back, these trips were in the con side of doing this. Hindsight is 20/20.

We spread the trip into a mini-vacation as we did last year. This year, we stayed the first two nights in Faribault, Minn. We rode bikes and kayaked here for most of Sunday and Monday morning. It was a nice town. The weather was extremely hot. Walking and golfing were both out of the question.

On Monday, we met my now retired nurse coordinator Janet for lunch. We were originally planning on a bike ride, but the weather forecast made us change our plans. It was supposed to feel like 101 by 11am. We decided on lunch instead. We had lunch with her and her husband and son and then spent the afternoon getting caught up and taking a hot walk through a beautiful park. The visit meant a lot to me. It was so nice getting to know her without a lab coat on and meeting her family.

Monday night, we met another group for dinner. We met Camille and Deb who are my JDRF government relations friends, Deb's husband Randy, and Scott Johnson a fellow blogger. We all shared what we had been doing and how all of these things intersect. I must have been talking too much, because I looked down and noticed that everyone was through eating and I hadn't even begun. The meal was good, but almost cold. Camille has convinced me to try to set a Promise meeting with John Boehner. I have been working on setting that up today. Scott recommended some good places to kayak and we all hoped to get together again. With friends like all of these, I won't need my arm twisted too hard to return to my special place up north.

My visit to the clinic was Tuesday morning. I had lots of blood drawn for labs and also a 24 hr urine test. Renae is my nurse coordinator now and I enjoyed spending the day with her. She had taken care of me during my transplant, so I already knew her well.

Dr. Bellin came in for my examination and for me to do my usual grilling of her with my questions. She is always very cheerful but serious and answers my questions thoroughly and patiently. My questions this time were mostly about my pending appt with a nephrologist and my worries about the immunosuppression. She didn't seem worried about either situation and I haven't thought much about them since. My labs will be a good measure of my kidney function and I don't have any symptoms from the immunosuppressants right now.

I had decided to give Dr. Hering a pig from my collection for his own collection as a thank you gift. Renae put it in his office so that he would see it when he walked in. It must have inspired him to come down for a visit, so I was able to see him. This of course, was the icing on the cake. We talked about how I was doing and about the pig islet cell research. It was a special moment and a superb ending for this last visit.

After everything was done, Gary and I did our last traditional walk along the Mississippi River. It was extremely hot, but it would not have felt right skip this portion of the visit. Despite the heat, the river was beautiful, the trees a brilliant green and the sky was blue.

We went out for dinner in St. Paul and were met there by Mary, my islet cell transplant BFF. We had spent some good times together at the Transplant Summit in November. It was so nice to see her again. She has just celebrated her 4th anniversary and is still inulin free. We enjoyed a nice evening reminiscing about our common experiences and catching up on our family news.

The trip home was uneventful except for the amazing heat. It has followed us home because it was 100 degrees today. We spent the afternoon floating in friend's pond and then went out to have a celebration dinner with the girls. It has been a good anniversary day.

Here are my lab results. The kidney function testing is having some follow-up.

Chemistry tests. All normal except
Cholesterol 201 But HDL is 83 which makes that OK
Sodium 131 normal is 133-144
AST 50 normal is 0-45

Urine testing
Microalbumin 29 normal is 0-20
Urine Total Protein 0.35 normal is 0-0.2

Creatinine 0.87 for comparison with previous readings. This has been fluctuating.
The Glomerular Filtration Rate result was 68 Normal is >60

CBC
WBC is 3.8 Absolute neutrophils is 2.8
Hemoglobin 10.8 normal is 11.7-15.7
Prograf was 5.5
Rapamune was ?
A1c is 6.0 which is down from 6.6 in April (Normal is 4-6.)
Before breakfast: blood sugar is 119 C-peptide is 0.94
After breakfast (90 min.) blood sugar is 241 C-peptide is 2.20

My only regret about this trip is that I forgot to take pictures of all of these events. I was just enjoying myself so much that my camera never occurred to me. Here are a few from our river walk and kayak trip.

Tennessee and laryngitis

2011-07-15T18:48:00.000-04:00

Ely Clan

We had our annual family reunion in Tennessee this year. We were in the mountains which was a change from our usual beach locations. We were able to do some hiking, kayaking and swimming in the beautiful weather as well as having a lot of fun and games in the evenings. As usual, a good time was had by all. We are so lucky in that way. Its hard to get a group this size together and not have to worry about any stress or conflicts. Except when Jacob and I kill at euchre! :)

Healthwise, it was a challenge for me. I had a sore throat with a slight cough when we left. It seemed to be getting better and I had cultured it twice at work and found no bacterial pathogens. On our second night there, I woke with a cough that was burning in my chest. The next morning, I went to an urgent care site. I was diagnosed with bronchitis and given a prescription for a Z-pac. This seemed to help and I never had the burning sensation again. I hoped to get back to normal soon. I got better, but never really all the way. I was still coughing and a little tired. I didn't miss too many activities except for the later night ones.

One night we went out for dinner to a barbecue rib place. Inside there was a showcase and more pig memorabilia than I have ever seen (except at home). It was like a museum and I just loved it!

We came home on Friday. We had 7 people and for awhile, a dog in our car. It was actually quite fun. I worked on Saturday and Sunday. On Sunday, I woke up with no voice at all. Another throat culture showed only normal flora. I went over 7 days with no voice. I was the butt of many jokes. It is finally coming back, but slowly. Even now I am scratchy and sometimes just run out voice. But, I can communicate, pay back, and kind of make phone calls. I'm back to gargling with anything google might suggest. I have tried hydrogen peroxide, mouthwash, vinegar, and salt water. No success. I feel fine otherwise which makes resting difficult if not impossible. Its summer and there are just too many options. My BGs are affected only a little. I am taking 7 units of Lantus instead of my normal 6 units.

On another front, Dr. Bellin has decided that I should see a Nephrologist. My creatinine and bun levels have been fluctuating too much. I have been noticing some ankle swelling and that my urinary habits are different lately. So, I know that its a wise thing to check it more closely. I have an appointment at the end of next month.

In the meantime, I am anticipating my 3 YEAR anniversary of my transplant and my trip to Minnesota for my final clinic visit. I am hoping to see many of the people that I have met during these last wonderful 3 years of this experience.

Dolly has been having some fear issues and we are taking her this evening to spend some time (maybe a month) with the ADAI trainers. We will miss her but hope that they can get her over this problem.

visiting Santa Barbara and a cold

2011-06-24T08:51:00.000-04:00

Gary and I were able to travel to Santa Barbara to visit our son who lives there. We absolutely love Santa Barbara. It has the beach, mountains, and with all of the blooming plants in June, it feels like being in a magnificent botanical garden. We had a wonderful afternoon of wine tasting in the back country.

It was nice to see our son, Gary and his girlfriend Heather. Especially since they just had a horrible scare a few weeks ago when Heather, at age 24 suffered a stroke. It looks like she will be fine, but it was an awful experience for all of us. For now she is off of her anticoagulants and is just trying to take it easy and hope for no recurrence. The longer she goes without having another stroke, the less likely she is to have one. They are being very cautious.

The weather was good and we were able to enjoy many of our favorite activities. We rode bikes, hiked in the mountains, walked the beach, and ate lots of good seafood. It is SO much easier to travel west now. We have skied in the Rockys many times and literally every time, I would have trouble with the time change. Even knowing in advance and planning on eating an extra meal didn't help. The time transition was very easy this time. I had no trouble with blood sugars at all. It makes such a difference in the whole trip.

The bad news is that I came down with a cold when we got back. I think it might have come from getting germs while on the flight home. This is the third time this has happened and it looks like I am going to have to take precautions the next time that I fly.

On top of that, I had a cortisone shot a few weeks ago. I needed to have a ganglion cyst removed from my wrist. The Dr tried to remove it by withdrawing it through a syringe and then adding the cortisone to prevent it from coming back. I thought this would be better than scheduling surgery. But, I was wrong. The cortisone is affecting my blood sugars. So now I am taking about 12 units/ day instead of my normal 8. I don't like it. I'm able to stay in pretty good control, but not as good as before. The cold is hanging on and I'm not sure how long the cortisone will last.

My creatinine was high again last month at 1.0. If it doesn't come down with the next draw, I might have to consult a nephrologist. I have been drinking water like crazy.

Dolly is progressing nicely. I am taking her on some public outings now. We have been to the library and our little IGA grocery store. Today, I am taking her to the bank. She gets very excited at first, but with time and treats, she calms down and does very well. She fared well with the girls while we were in California. We are leaving tomorrow for our family reunion trip to Tennessee and she will be placed in foster care through the Assistance Dogs of America. It will be her first separation from all of us and we hope she does ok with that. I know that we will all miss her.

Labs and a Golden

2011-05-27T17:41:00.001-04:00

I seem to be on some tangent with my electrolytes lately. Its a little beyond my knowledge, but I'll post the numbers now and either the interpretation or the effects at a later date.

It began in January with a spike in my creatinine to 1.01 which led to a followup.
The followup showed that the creatinine had decreased back to 0.7 which is normal for me.

My creatinine increased to 1.0 again at my routine labs drawing in April.
The followup showed that it had decreased again to 0.8.
But, my sodium was low at 129. normal is 134-147
In January, it was 133 when I was tested in Minnesota.
And my BUN was a little high at 22. normal is 10-20

This led to additional testing last week.
Creatinine was steady at 0.8.
Sodium a little higher at 131.
BUN a little higher at 25.

The testing beyond this was all normal.
Liver enzymes, Albumin, TSH, ADH, Cortisol, Aldosterone.
These were checking on other organs and cell processes to probe the sodium problem

I haven't heard from my endo about these last results. I am assuming that no news means he is not worried. And the same from Minneapolis. Renae said Dr. Bellin has seen these and is also not worried.
So, neither will I. For now, it is something to keep an eye on. Most importantly, I feel fine. I might be a little hypochondriacal, but my ankles seemed a little swollen at times and I have seemed thirstier lately. Maybe these will subside now that I know everything is ok. I'm thinking they will.

During one of these draws, I had my C-peptide checked. I was nervous about having this done because I assume that I am on the decrease. It was down to 0.38. In January, it was 0.66. To be honest, I was a little relieved to see that it was still able to be detected. The interesting part is that the decrease does not reflect my BGs or insulin use. I have had very good numbers lately. My last A1c was 6.6 which is a little higher. That wasn't a surprise because of all the colds I have had in the last 3 months. I think I will be lower at my next check in July. And my insulin dose is back to 8 or 9 units/day which is where I was before all those colds.

Dolly has been progressing. She has the commands that she needs to know at this stage down well. She is still behind on the social issues. Still overly excited by people and very submissive to dogs other than Callie. She is growing like crazy and beginning to look more like a dog than a puppy. She will have one more outing with her trainer next week and then she will get her vest and I can begin to take her to some public places. In the meantime, it was suggested that I walk her around the outside of some buildings to get her used to shopping carts and strange faces.

D blog week - Awesome things

2011-05-14T09:29:00.000-04:00

Awesome things - Friday 5/13:
Today's topic is to write about something awesome that you have done despite diabetes.
Of course the thing that comes to my mind first is my transplant. But I did that more to spite diabetes. So I'll write more about my venturing into the online world.

I began looking at online discussions when I began using Symlin about 5 years ago. It was scary to try something so new and it really helped finding people who blogged about their experiences with it. It was good to know that the nausea would eventually go away. The package insert and other information I had made me believe that it would dissipate in days, not months.

Next, when I started using my continuous glucose monitor, I was able to learn on line that you could use the sensors for longer than the 3 days that I was led to believe was their entire life. And here I also learned the how to part of making them last which saved me hundreds of dollars. At this point, I was paying for them myself.

Then once I learned these things, my skills increased to reading articles about diabetes in general. And this is when I saw that picture of the pig(at the left on my blog) that eventually led to my transplant.

Because my online experience began with my discovering the value of reading about other peoples' experiences, I was compelled to share my islet cell transplant journey. I get comments and messages from people that lead me to believe that it has helped some other people to learn more about the process. It has been very rewarding for me. And by far, the best part has been the relationships that I have built with some of the people that I've met throughout the course of this. I never gave much credit to online relationships before, but now have experienced some deep friendships with some of these individuals. I have been lucky enough to meet a few of these people in person. You would think that it would be so strange to hug someone the first time you have ever laid eyes on them, but it feels very natural. I have been involved with the pancreatic islet cell recipients page on Facebook and think it is an extremely valuable resource for anyone who is looking for more of an inside perspective on islet cell transplants. For me, it is a great place to share this experience with others who truly can understand. My only question is: How did we ever live without this resource before?!

D blog week - 10 things I hate about Diabetes

2011-05-13T19:13:00.000-04:00

Ten things I hate about you, Diabetes - Thursday 5/12
This is day 4 of the group blog week. This one should be easy. I will be writing partly from my pre-transplant perspective. Some of these things apply to me now, but luckily, not all of them.

1. Having to try to use math to solve a biological problem. It doesn't work. If X units should = Y carbs, it usually doesn't because of Z exercise and A hormones and B weather and C ghost factor.

2. Having to eat when I don't want to to fix a low.

3. Finding test strips everywhere.

4. Bleeding on things that don't belong to me after I do a finger stick and don't realize I'm still bleeding a little.

5. Those commercials that talk about virtually painless testing and show you a picture of the test strip and meter, but not of the lancet.

6. Ditto the commercials that talk about how not having to code your meter really frees up you life.

7. Even after all these years, testing in front of people.

8. Realizing that the emergency granola bar that you were counting on and need that is in your coat pocket is from last year.

9. Bad infusion sites.

10. Yucky looking finger tips.

This was even easier than I thought it might be.

Group Blog Week - Admiring our Differences

2011-05-09T20:47:00.000-04:00

Admiring our differences - Monday 5/9

Its group blog week and the theme for today is to write about blogs that are different from our own. One thing that I enjoy about blogs and blogging is that there really are no two alike. They are as individual as the people who create them. There are two blogs that I find myself reading the most often. They are very different from each other and both have aspects that appeal to me and that I admire.

The first is written by Scott K. Johnson at Scott's Diabetes. What I like about his blog is that he is so sincere and honest about what he writes about. He talks of the highs and the lows(literally) and is able to express his personality so vividly in his writing. He is very talented at getting a point across within his story that resonates with me and usually with many people. He so obviously enjoys interacting with other diabetics, despite the fact that the thing we have in common is an unfortunate part to our lives. I was lucky enough to meet Scott when I was in Minnesota for a checkup and found him to be just as charming in person.

The second blog is written by Joshua Levy at Current Research into a Cure for Type 1 Diabetes. He writes about the most current clinical trials and how they are progressing. He is very knowledgeable about the science behind the research as well as the process involved to move it forward. He writes very well, just a little above my head which I enjoy because I always learn something. His motivation is his daughter who is a Type 1 diabetic. I think what he is doing is providing hope for her, for himself, and for anyone who reads what he writes. Its very therapeutic to see it all in print. He also lists the trials which are funded by the JDRF which is useful information at walk time.

A lesson learned

2011-04-29T21:02:00.000-04:00

My blood sugars have been creeping upwards lately and that really stresses me out. I do what I can to stop it from happening which means exercise and reducing carbs. But, both of those things can only be done to a certain level. I still have to have some energy for the other parts of my life.

On Wednesday, my fasting was 162 which was shocking. I spent most of the day feeling sad about it. Then, it hit me that I have been using the same vials of insulin for awhile. I'm not really sure how long. I use such a small dose that they last forever. And I have 2 pens of Lantus and 2 of Novolog going. One of each for home and one for away. So I threw out my home pens. My BGs improved immediately. On Thursday, my fasting was 94 and today it was 89. Amazing. I now will make it a rule to get out new ones on the first of every month. The package insert says they should last for 28 days. It will bother the frugal side of me to throw out so much. But if it saves me from having sad days over nothing, that's a small price to pay.

Dolly was my own therapy dog on Wednesday. She is growing up and doing very well with her training.

Islet cell transplant - Day 1000

2011-04-16T10:07:00.001-04:00

Today is my 1000th day since my transplant. I keep track of this number on my blood sugar logs and this feels like an important one.

Everything is going will with my islets in general, but lately I have been having some problems with getting colds. Since Feb. 1st, I have had one cold after another. Sometimes upper respiratory, sometimes GI, and this last one has been both. To make matters worse, my BGs and insulin needs increase during these bouts. That makes me worry about my islets.

As of now, I am feeling much better. My BGs are back to normal and my insulin as of yesterday has returned to 8 units/day which is my normal. I am blaming it on our lousy weather and the fact that I have to be out in it more to take Dolly out. I have been recruiting more help with this since my last bout of illness and that seems to be helping. I think I have developed an actual fear of the cold weather.

Dolly is continuing to do well. Her housebreaking is almost perfect. She has learned her "sit" and "down" commands and comes when she is called. We are working on barking for attention and jumping on people. She also has shown some submissive/fear behavior with other dogs that we are trying to recondition. She is very eager to learn and is lots of fun to play with. She is beginning to get the idea of fetching.

I went to a very interesting lecture this week at the community college where I teach. The topic was stem cells and the speaker was Arnold Caplan who is the founder of Osiris Therapeutics. He did a wonderful job of explaining how adult stem cells are harvested from body sites like bone marrow and fat cells and described the various applications of the products. The harvesting process is similar to that of my islets from the pancreas. The cells are removed and isolated through centrifugation. The stem cells are next exposed to specific enzymes that direct which type of tissues they will become. The cells, called mesenchymal cells, are originally located on blood vessels. Their function is to repair the vessel if it becomes damaged and to neutralize the immune system so that the repair work will not be compromised.

This topic was extremely interesting to me because I know two people who have had stem cell treatments for their diabetes. Sandra, whose son had a treatment with stem cells from his bone marrow, and Eliza who had her treatment with her own adipose cells. Both have had positive results.

I told him about my islet cell transplant and he seemed very interested. I explained to him that if my islets don't last forever, that maybe stem cells might help. I asked Dr. Caplan if he thought I had enough of my own islets left to repair and he didn't think so. I asked about the islet cell pouch procedure which could be loaded with stem cells. He thought that would probably not be available in time for me. He did say that he believed that my problem was not my islets dying off, but my long term exposure to the immunosuppressants. He strongly recommended that I ask my doctors about the possibility of a stem cell treatment. The stem cells have an immunosuppressive effect and could possibly allow me to lessen my current dose of immunosuppressive drugs. I said that I would ask about it, and I will. Now that I have had more time to think about it, I realize there would be complications with doing this. First of all, it would compromise my data for the study. I am still committed until my 3 year anniversary which is in July. Second, how would you calibrate the dosage of either the stem cells or the immunosuppressive drugs? I would be afraid to risk the possibility of leaving my precious islets unprotected. I am planning on having this discussion with both my endo here and with the doctors in Minn. It will be very interesting to see what they think, as always.

The beginnings of Spring!
Hopefully, straight to Summer.

Dolly- our service dog in training

2011-04-03T14:11:00.000-04:00

We are fostering a service dog. We got her almost 3 weeks ago. Her name is Dolly and she is doing very well. She is taking up most of my spare time, but she is cute and its fun to be with her.

Its very different raising a service dog. There are so many rules that we must teach and enforce that we didn't with any of our other dogs. Right now, the most difficult rule to teach is keeping her off of the furniture. It would be easier if we didn't already have Callie who is allowed up on things. That inconsistency is hard, but what is really difficult is that they play and chase around the house. Callie escapes to the couch and it seem natural for Dolly to follow. We're working on that one.

There are several commands that we are attempting for this first month. She has mastered "come", "sit", and "down". We are trying to incorporate "lets go", "leave it", and "give" into daily routines. It will be much easier when this awful weather breaks and we can go on some enjoyable walks. Several of the commands lend themselves well to walks. The "give" command should inspire some good fetching. One of the things we can't do with her is tug of war. Since that seems to be what we do with dogs to play, it has been difficult to interact sometimes. I'm hoping that the fetching will be fun for both her and us.

Literally everyone who we have told about Dolly asks how we will ever be able to give her up in a year from now. It will be difficult. Very. But, even from the get go, she feels somewhat like she already belongs to someone else. She will have a purpose to her life. The different rules help to reinforce this feeling. We are already very attached to her and proud of her. But someone else will love her and also need her. I think the one who will have the hardest part dealing with her absence will be Callie. She can't know of the reasons for her departure. But, it also may happen that Becky decides to move on in the meantime. Life is uncertainties.

As for me, I have been getting a few colds this winter. It began in early February with a chest cold. I had to take amoxicillin for that. It lasted most of 3 weeks. Then I had some stomach problems. That lasted about 2 weeks. Then, just last week, I developed an upper respiratory infection. Just some sniffles and coughing and general tiredness. I'm feeling much better now, so that one was much easier. I'm not sure what the difference is this year. This is the most I have been sick in many, many years. I usually don't get anything. I have always credited the flu shots for that. This is more what I expected to happen since I was immunosuppressed. I don't know if I was just lucky before, or unlucky this year. My blood sugars almost directly parallel my symptoms which I find even more interesting than frustrating now. It doesn't bother me so much now that I know it will probably come back to normal.

Stem Cell Science Vs. Politics

2011-03-31T12:13:00.000-04:00

In Minneapolis right now, there is a rally taking place to try to stop a bill from being passed that would ban stem cell research. The story can be found in the Minneapolis StarTribune. The group that is driving this debate is the Minnesota Citizens Concerned for Life. If this bill would pass, it would not only hinder important research done in Minnesota, but could spread to other research centers as well.

Their argument is under the guise of human cloning, but would cut much deeper. The stem cell research that is focused on curing diabetes and other diseases is not based on cloning at all. Much of this research uses adult stem cells which are taken from living humans and sometimes uses cells from the patient's own body. Embryonic stem cell research uses cells from cell lines that are already created. The cells are not fertilized with only research as an end result. They are already present and would eventually be discarded.

Our country is already behind many others because of the strict ban imposed by President Bush. Many of our citizens are going to other countries for treatment in centers that might not be as accredited or even as safe as our own would be. This science is destined to evolve with or without the support of groups like this one. It will be a major milestone in the human condition when we have the capability to cure or suppress terrible diseases with this mechanism. Our country should be a part of this.

It is a shame that a small group of single minded people could have such a devastating effect on research that could save so many lives. I wonder how many of them really understand the biological and ethical implications of what they are trying to accomplish.

Diabetes Research Summit interviews

2011-03-14T19:14:00.000-04:00

The interviews of myself and Dave T. were just posted at the Diabetes and Research and Wellness Foundation site. I'm hoping that the other interviews will be available soon. Watching these brings back so many good memories. It was such an exciting and important event. I hope that it generated both interest and funding for this research. I still have the impression that islet cell transplants are not well known or understood even in the diabetic community. I continue to read blogs written by diabetics and online magazines and social media and see that so many diabetics honestly don't have hope for a cure in their lifetimes. I add my two cents whenever I can, but still reach only a small percentage of this population.

As for the state of my health, it has been very up and down lately. Both my general health and my blood sugars. It is very interesting to see how they directly parallel my symptoms. I already wrote about the cold that I had in early February. It lasted about 19 days and required antibiotics. When this subsided, I had about a week of feeling good. My BGs and insulin needs went all the way back to normal (8 or 9 units/day). Then, I developed some intestinal problems that lasted most of 2 weeks. My BGs and insulin needs both increased again, although not as much. I was very concerned that it was due to my immunosuppressants that have needed increases in dose for the last few months. But, either I have acclimated to that, or I am over something that I was infected with. Now, I feel fine again.

I have just returned from a very nice trip to California. My Mom and I went to visit Gary in Santa Barbara and Cassie in San Clemente. It was so extremely nice to see them and the sun. Of course, we were there during the tsunami warning. We were able to avoid the beach that day and I understand that not much happened anyway.

We returned early this morning. Today, my day will be to puppy proof the house and go pick up a puppy from the Assistance Dog of America Inc. I have decided to foster a service dog for the first year of its life. I'm sure that it will be both lots of work and lots of fun. I will be posting updates of this adventure.

Islet cell transplants can be cost effective as well as increase the quality of life- a study

2011-03-06T17:02:00.000-05:00

I recently found this abstract and thought it was very interesting and exciting. I was able to get a copy of the entire article from a friend, thanks Jason, but can't print all of it due to copyright laws. I am going to attempt to write about the highlights of what this shows.

A health economic analysis of clinical islet transplantation

Keywords:

cost;
cost-effectiveness analysis;
economic model;
health economics;
islet cell transplantation

Beckwith J, Nyman JA, Flanagan B, Schrover R, Schuurman H-J. A health economic analysis of clinical islet transplantation. Clin Transplant 2011 DOI: 10.1111/j.1399-0012.2011.01411.x. © 2011 John Wiley & Sons A/S.

Abstract: Islet cell transplantation is in clinical development for type 1 diabetes. There are no data on the cost in relationship to its benefits. We performed a cost-effectiveness analysis and made a comparison with standard insulin therapy, using Markov modeling and Monte Carlo simulations. The patient population was adults aged 20 yr suffering from hypoglycemia unawareness. Data were estimates from literature and clinical trials: costs were based on the situation in the United States. For insulin therapy, cumulative cost per patient during a 20-yr follow-up was $663 000, and cumulative effectiveness was 9.3 quality-adjusted life years (QALY), the average cost-effectiveness ratio being $71 000 per QALY. Islet transplantation had a cumulative cost of $519 000, a cumulative effectiveness of 10.9 QALY, and an average cost-effectiveness ratio of $47 800. During the first 10 yr, costs for transplantation were higher, but cumulative effectiveness was higher from the start onwards. In sensitivity analyses, the need for one instead of two transplants during the first year did not affect the conclusions, and islet transplantation remained cost-saving up to an initial cost of the procedure of $240 000. This exploratory evaluation shows that islet cell transplantation is more effective than standard insulin treatment, and becomes cost-saving at about 9–10 yr after transplantation.

This study has attempted to compare the cost of managing Type 1 diabetes by intense insulin therapy to the cost of intervention with an islet cell transplant. Also woven into the design is how both affect the quality of life.

It begins with data on islet cell graft survival. I converted their graph into a chart.

one year results: full function= 93% partial function= 8% no function= 0%

five year results: full function= 47% partial function= 37% no function= 17%

ten year results: full function= 27% partial function= 49% no function= 24%

This shows that most recipients make it to one year, and half make it to five years with no insulin.

And that half make it to ten years with at least partial function.

This is very positive. Its personally disappointing to me because I am behind the curve. I only made it 2 years with no insulin, but it gives me hope that I will remain where I am for awhile which is still at a very good place. This data reflects what I notice from the cast of characters on the islet cell recipient facebook page as well.

The Quality of life variable was very complicated and I am going to simplify it greatly. It was comparing how the hardships of each treatment affected the quality of the patient's life. The values ranged from 0 which is worst to 1 which is best. The values that I thought the most interesting were:

A healthy person aged 25-34 had a quality of life valued at 0.91

A diabetic aged 25-34 had a quality of life valued at 0.81 If this person had hypoglycemic unawareness, which all recipients do, a reduction of 0.06 put this pt at a 0.75 quality of life.

From here, adjustments were made base on diabetes causing complications that the insulin group would face, and side effects and graft failure issues that the transplant group would face. A graph shows a mostly parallel line with the transplant group slightly ahead of the insulin group.

Then came the cost analysis. The numbers themselves were stunning.

Cost of the organ procurement was $25,000.

Cost of harvesting the islets was $20,000. with a 50% success rate means $40,000.

Cost of immunosuppression was about $1400/month

Cost of transplant was $93,500. Each successive year was $19,000.

Cost of insulin therapy/year was $6,600. The cost of having complications varied from $106,000 for renal failure to $1,400 for neuropathy.

Combining these two variables shows that initially the transplant is more costly. But, over time, as the cost of the transplant stabilizes, the cost of insulin therapy and its long term complications increases. This study covered a span of 20 years. At about 9 years, the costs intersect and the islet cell transplant remains the lower cost option.

Interesting numbers here were:

20 year cost of insulin therapy was $663,000. Quality of life years gained was 9.1.

20 year cost of islet cell transplant was $519,000. Quality of life years gained was 10.9

The article goes into much more detail, but these are the highlights. It also includes a discussion about how the transplant procedure is expected to improve. This has already proven to be true in that due to a change in an enzyme used in the harvesting procedure, more islets are now obtained per pancreas than when I had my transplant in 2008. And there is much more on the horizon............

Can't shake this cold

2011-02-19T11:58:00.000-05:00

I am now on day 19 of this cold. It started just after I got back from Florida and is still hanging on.
It began with a cough, then a low grade fever and has progressed through headaches and weakness.

I switched from Keflex to Amoxicillin because of the severe headaches that I was attributing to the Keflex. I might have been right because that particular headache didn't come back. I started feeling better and the fever quit as soon as the antibiotics started. Since then I have been on the stairstep approach to healing. I would take one step forward and then one back. It has literally been an every other day thing. The weather has been much better lately and I have probably been pushing myself too much, but that isn't all of it.

I'm worried that I might have lost the weight that I have been working for a year to gain. Frustrating, but I suppose this is the very reason that I thought I should have a little extra to spare. I'm putting off weighing myself until I feel a little thicker.

My blood sugars parallel my state of health almost exactly. At my worst, I was needing 14 units/day. At my best, I was back to 9 units/day. I was at 8 units before this illness hit. On my step back days, I would go back to the 12-14 unit range.

This is the longest I have held on to a cold since I had mono in high school. I'm not enjoying it. I am curious as to whether the longevity is due to the immunosuppression. It seems obvious, but I have also heard of other people who have had colds for awhile this year. I think I might have given mine to a coworker. Sorry! But it will be interesting to see how long hers lasts. She hasn't succumbed to antibiotics (yet) so it might not be a fair comparison.

My blood pressure has improved since I began the Lisinopril. Today it was 117/75.

This cute pig was sent to me by an islet cell friend. Thanks Melissa! I need one of these.

Dear Diabetes

2011-02-17T15:49:00.001-05:00

I am going to re-post this for the 2011 Diabetes Blog week. Today is Day 2 which is to write a letter to Diabetes.

This is part of a wego health health activist group blog project. The assignment is to write a letter to your disease. This is a little dark for me, but I am not a fan of diabetes, obviously.

Dear Diabetes,
Here is how I really feel about you.

Diabetes is not a person. It is not a thing. It is a place.

from a Dr. Seus book

I am here even if I don't want to be.
I have to keep moving even if I am tired.
I have to be brave even if I am scared.
I have to try to put a puzzle together in the dark. The pieces constantly change their shapes.
I'm uncomfortable most of the time.
I can't leave.

With an unexpected miracle, I have left that place.
It haunts me and I fear going back.
I meet people from that place and feel sorry that they are still there.
I am trying to destroy that place.

To read more letters submitted for this project, go here. (wego health)

First Islet cell transplant in Ohio and a rough week for me

2011-02-11T19:30:00.002-05:00

Its been a long week. I returned from a wonderful trip to Florida on Monday night, enjoyed a quiet day at home on Tuesday, and then came down with a nasty cold on Wednesday. Its Wednesday again, and I'm worse for the wear. This is the first time that I have had more than a cold since my transplant. The CMV doesn't count because it was due to my immunosuppression.

It began with a cough, then a low fever. I got in to see my Dr. on Saturday who prescribed Keflex. I started it Saturday and expected to feel better soon. Saturday night, I got a really strong headache on my left side. Usually my headaches are on my right side, so this was strange. It got worse and could not be relieved on Sunday. I called my Dr to ask if this could be due to the antibiotic. He didn't think so, so I kept taking it. By Monday night, I had to give up on it. I called in sick on Monday for the first time in over 7 years (I just hate wasting those vacation days). I woke up on Tuesday with no headache. I called the Dr to see if I could try a different antibiotic. My cough had improved, but was not gone. It actually got worse as the day went on. He prescribed Amoxicillin. I started that Tuesday evening. My headache resurfaced again, but probably because I was so exhausted from my return to work.

My blood sugars have been increasing with all of this as well. I normally take about 8 units. I'm now up to 15 units/day. This worries me too.

Finally, this morning I am beginning to feel like I might be getting over it. My headache has subsided which makes all the difference. My eyes and head feel so much more clear. My BGs are still running high. Hopefully, I can get just a little exercise in which should help. I'm still not eating much and have probably lost the weight that I had been trying so hard to gain. I have these next two days off. That should help.

Also on the horizon, I had to increase my Rapamune level. Now I take 8mg/day. Both of my immunosuppressants have been on a steady increase lately. I asked Dr. Bellin about this. She said its not common, but does happen. Hopefully, this will taper off. I will have my level tested again on Friday to see how the new dose is holding.

To end on a much more pleasant note. Florida. It was wonderful. My sister and I visited our Dad and his wife in New Smyrna Beach. The weather was warm and sunny. I got in several walks and a nice bike ride. We walked along the beach and boardwalk. We ate lots of seafood.

One of the highlights was that I was able to meet my friend Sandra, from the Adult Stem Cells blog, who I have been corresponding with by email for over a year. We had a wonderful family meeting at a McDonald's near the airport in Orlando. It was a new experience for me to meet someone who I already know so well. It was scary at first, but ended up being a very special time for me. Her family had a very endearing quality that made us all at ease. I especially enjoyed getting to know her son Gabriel, who had a stem cell transplant over a year ago to help his Type 1 diabetes. He is doing very well and is so knowledgeable about all of the details involved to keep his BGs on track.

Ohio State University performed its first islet cell transplant recently. Finally this procedure has come to my state. Here is the Story.

And here are some flowers that Gary got for me while I wasn't feeling well.

The scare is over

2011-01-27T18:21:00.005-05:00

I saw my endo on Monday and learned that my creatinine level was back down to 0.7. Since the transplant, I had been running in the 0.6-0.8 range, so I am back to normal. I am SO relieved. This is the worst scare that I have had yet. The CMV bouts were worrisome, especially the second time. But, I knew it could be controlled with Valcyte, an antiviral drug. This high creatinine combined with my higher blood pressure had me worried about my kidneys. My worst fear was that I might have to decide between my new islets and my kidneys. And of course, there is no decision there.

With some hindsight, I think this might have occurred while my Prograf level was increased. At my monthly check on my drug levels, the Prograf level came out really low. My dosage was increased in response to this and my level was rechecked. It was above range, so my dosage was decreased almost to where it was before. Then, about a week later, I noticed that I was really tired and felt almost sick. I was also having some leg cramps at night. Both of those got better within about 3 weeks and I forgot about them. While I was fretting over the creatinine and BP numbers, I was googling kidney function. I found both the fatigue and the leg cramps as symptoms of kidney stress. So, I'm guessing that my high creatinine was due to the temporary increase in Prograf and it was caught on its way back down to normal at my Minneapolis visit.

So, with the kidney scare over, just the high blood pressure had to be addressed. Since I can't lose weight or increase exercise more, the answer is in the form of one more tiny little pill. I'm now taking Lisinopril to keep my BP under control. My BP was about 150/80 at my appt, so no argument from me. I had been trying to lower my salt intake and drink more water, but that didn't seem to help. I asked if it was most likely due to the immunosuppresive drugs and was therefore a losing battle, and my Dr. said yes. It shows how perspective can change. At my last visit, when the increased BP was discovered, I was nowhere near ready to give up and add another prescription to my arsenal. Now, it seems like a relief to have an easy fix to what I believed to be a complex and scary situation.

The good news also made for another cheery visit to my endo. We really seem to click and I enjoy my visits. I was dreading a sad conversation and ended up on a very happy note. My A1c was at 6.2. It was 7.1 at my last visit which was when I began the insulin. We were both pleased by that.

It still amazes me how effective a small dose of insulin can be. I am taking 6 units of Lantus/day and 1 unit of Novolog before breakfast and lunch. I do my exercising after dinner these days and that allows me to skip the Novolog dose before dinner. I have been experimenting with trying to exercise between lunch and dinner. But when I skip the Novolog there, I end up with a higher number. Maybe when the weather changes and I can be out more, I'll try again.

This is the only flower I have at the moment. Its actually last year's Poinsettia. The white background is what it looks like out my window today. I'm ready to see some more GREEN.

Islet cell transplant at 2 1/2 years

2011-01-20T21:54:00.001-05:00

I have been invited to be a featured blogger by the diabetes social network, the Diabetes Herald. I'm really honored to do this. The site is a useful source to see what people are writing about and offers a way to catalog and compare different issues. I especially like the way it allows the reader to view blogs in their entirety. I only wish I had more time to read them all.

I just returned from my two and a half year post-islet cell transplant visit at the University of Minnesota (SDI). I was also able to spend part of my visit with some friends that I have met who live there.

The flight was uneventful which is a good thing traveling from Detroit to Minneapolis, via Chicago. I was only about an hour later than anticipated. I was met at the airport by my friend Camille and her husband Geoff. We all went to a chinese restaurant near the University for dinner. Deb, who is Camille's friend and fellow JDRF supporter was there and we were joined by Scott Johnson who is a well know diabetes blogger. It's always such an uplifting and dynamic feeling to be able to talk about diabetes with people who are so passionate about the topic. We spent a wonderful evening sharing ideas about our various experiences with diabetes. Scott and I are both Type 1s, and the others were parents of Type 1 children. The more that I'm around parents of diabetic children, the more I appreciate their courage and strength. It would be so difficult to have to treat diabetes without the (privilege) of feeling any symptoms. Numbers are secondary prompts which is all that they really have to work with. We discussed how diabetes can be very frustrating and there just aren't any hard fast rules to go by. We can see how the JDRF artificial would be helpful, but are skeptical about relying on its accuracy to deliver insulin safely. My situation is so different. My islet cells only make the insulin if stimulated by glucose, and never over produce and cause a low blood sugar episode. I rarely have the opportunity to be in the presence of diabetics or parents of diabetics and it always serves to remind me how incredibly lucky I am. We were also excited by the research involving stem cells and the regeneration of islet cells. Each of us feel very compelled to share our messages to the diabetic community and to raise awareness of hope and the need for funding to increase the research potential.

We talked, commiserated, offered hope and just plain had fun until past our bedtimes (at least mine) and then decided to get together again in July when I will return for my 3 year checkup. It will be my last visit there for the study. Scott is a fellow kayaker and we are hoping to get an excursion into the plans as well.

I was up early the next morning and took a shuttle over to the clinic. I was pleasantly surprised to find that Janet, the clinical coordinator was also to be my nurse for the day. Then I realized that she was performing the physical part of the visit instead of only the paperwork part because of funding difficulties. That was a sad thought. But it was a plus for me to get to spend the extra time with her. She did say that some additional funding had just come through last week.

I found that as suspected, I had gained about 3 lbs. My blood pressure was high for me at about 150/85. I used to be much lower at about 110/60, so this was a worry.
I had my blood drawn for the glucose, C-pepide and A1c to check on the islet's functioning.
Also a CBC, lipid pannel and liver and kidney chemistries to check on my overall health.
And there were several tubes drawn to monitor various antibody levels as part of a separate study which attempts to isolate which antibodies are trying to get at my islets. When this was done, I was given a measured amount of Boost which contained a controlled amount of carbs and other nutrients. This is called a mixed meal test.

Dr. Bellin came in and did the physical part of my neurological testing. That consists of testing of reflexes, eye movement, walking a straight line, and sensitivity of my extremities. I passed all of those. We discussed my insulin use somewhat and then I took the opportunity to ask about the pig islets. She explained that they are still testing the pig islets on monkeys trying to get the best combination and strength of the immunosuppressants. I asked if I would be able to get some despite having had one transplant. She was skeptical, but didn't say no. We both agree that it would be, by far, the second choice to having my present islets last forever.

Next, Janet did the verbal part of my neuro testing which was remembering words, counting backwards from 100 by 7s, drawing shapes and writing a sentence. I have done this so many times now that I can have some fun with it.

Then I was drawn again at 90 minutes after drinking the Boost. This was to check glucose and C-peptide.

When this was done, I was allowed to eat breakfast and then went for my traditional walk along the Mississippi River. It was cold, but enjoyable. The sky was blue and the sun was shining on all that snow.

When I got back to my room, Janet told me that some of my labs were back and that my creatine was elevated. This in combination with the higher blood pressure is a worry that my kidneys are being stressed, most likely from the immunosuppressants. So, I was advised to see my doctor at home and have an evaluation on what to do about this. Dr. Bellin recommended a drug, Lysinopril, to try that should help both my blood pressure and my kidney function.

When my immunosuppressant levels came back, the Prograf was slightly elevated, so it was decreased from 10mg/day to 9mg. I will be redrawn on Monday and hope that this will help my kidney function. I'm also trying to be very good about drinking more water.

Here are my lab results from this visit.
Chemistry tests. All normal except:
Cholesterol 223 But HDL is 125 which makes that OK

Creatinine 1.01 It has been running at 0.6-0.8 so this increase is cause for concern.
The Glomerular Filtration Rate result was 58 Normal is >60

For the CBC
WBC is 3.3 Absolute neutrophils is 2.1
Hemoglobin is 12.9.

Prograf was slightly over the target range, so I have decreased my dose from 10mg/day to 9mg.
Rapamune was within range. I take 7 pills/day now.

A1c is 6.4 which is exactly what it was at my 2 year checkup in July. This was before I started back on insulin. In the meantime it had increased to 7.1 which is the point at which I began the insulin.

Before breakfast: blood sugar is 98 C-peptide is 0.66
After breakfast (90 min.) blood sugar is 220 C-peptide is 1.39

This is lower than at my 2 year visit. But it is the same as it was at my last test after beginning the insulin. I did take my Lantus dose the day before, but not the morning dose of Novolog since I was fasting.

2010 My islet year in review

2011-01-01T22:28:00.002-05:00

Looking back, this was a very eventful year.

It began with my realizing that my fatigue might just be more than the typical holiday over doing it. I discovered that I had CMV (again). I began taking the antiviral drug Valcyte again to treat it. It wasn't as difficult as the first time I had it either in intensity or duration.

This led to looking into (literally) my colon to see if the CMV was causing some of my abdominal discomfort. I received a very interesting photo that showed what an inflamed colon looks like. I still have it. But, it was determined that it was not the CMV, but the results of one of the immunosuppressants I was taking.

This led to me giving up on the Cellcept and going back on Rapamune. I was on this before when I was still taking Raptiva. It caused me to feel much better other than an occasional mouth sore.

I discovered how well Debacterol works on mouth sores.

I was able to tell my transplant story on several occasions. My story was featured in a two part article in the JDRF of Northwest Ohio newsletters in January and February. Then in May, my story was again told in the newsletter published by the Diabetes Research and Wellness Foundation.

I participated in a Promise Meeting with our local congressman, Bob Latta to convince him to cosign for the Special Diabetes Program. He did and it passed in November.

The Islet Transplant Recipients Facebook page was created by Matt Jay.

I participated in two JDRF walks. I was a team captain for the first walk. We raised over $900. It was a fun and rewarding experience. I was touched by the turnout and the comments that I received. I was a helper instead of walking at the second event. I helped to recruit people to become JDRF advocates.

I celebrated the 2nd anniversaries of both my transplant and of my being off of insulin.

I started using insulin again. This was very disappointing for awhile. In hindsight, it was also somewhat of a relief. I lived through my worst fear and have survived it. It had been very difficult to slowly watch my BGs increasing and not having the capability to stop them. I was cutting carbs and exercising all that I could, but it just wasn't enough. I was feeling a little bit like I was failing again just like all of those years before my transplant when I just couldn't get it right. So now, with an insulin crutch, I can at least be successful again in controlling my BGs. This seems to be very important to me. And as before, the needles and bother of the insulin are not the least bit of a problem or stress. I'm just glad that they work.

I was on TV. With Dr. Hering. It still feels like a dream that I had the opportunity to do that.

The Diabetes Transplant Summit was an experience of a lifetime. The people I met. The message that we shared. I know I will never forget any of it and will enjoy thinking back about it forever.

2010 was a fantastic year for me. I am so very lucky.

To begin the new year, I did a polar bear plunge into the Maumee River. It was really, really cold. I was double dared.

Merry Christmas 2010

2010-12-24T17:28:00.000-05:00

I had a scare with my Prograf level this week. I get my Prograf and Rapamune levels checked monthly to make sure I am within range. Prograf should be between 4 and 6. Rapamune should be between 8 and 15ng/ml.

My prograf came back at <2 which is really low. Janet called to ask if I could think of any reason. I hadn't missed a dose. I hadn't eaten any grapefruit. No digestive problems. So my dose was increased from 8mg to 12mg/day. I was drawn again the next day to see what level that would achieve. It came back today at 10.3 which is too high. So now my dose is 10mg/day. Dr. Bellin thinks the lab first level might have been an error. It does look that way to me. My Prograf levels have been fairly stable until now. That would be better than the alternative of really having my level be that low and have to worry that my islets were not protected. As a Medical Technologist, a lab worker myself, it does remind me how important each lab value is to the person who is awaiting the result.

This is the Christmas card we sent this year. Gary is a master of photoshop.

Islet update

2010-12-16T19:34:00.000-05:00

I seem to be in a stable place right now. I'm still taking about 8 units of insulin per day. The best strategy seems to be to take 6 units of Lantus at supper time and 1 unit of Novolog before breakfast and before lunch. With the change in the seasons, I have been getting my exercise in after supper instead of immediately before. I miss my walk, but this way, I can skip my before supper unit of Novolog.

This seems to keep me steady. I get a few highs and even some lows. Both seem to be direct effects of exercise or lack thereof. I can tell when my body is stressed as well. I had a headache last week that caused an increase. Emotions have the same effect. Its surprising how quickly things can get out of range. I really have to keep my hands on the reins.

I saw my opthomologist last week. Still no signs of any retinopathy.
I have been lucky with staying healthy too. I've been around some coughing and sneezing and worse people without catching anything.

I have been sleeping much better lately. My insomnia stopped abruptly about the time that I started taking insulin. I rarely have to get up and read anymore to get myself back to sleep.

On the research front, a new treatment that invovles taking stem cells from testicular cells and converting them into insulin producing cells has been making the news. It may be that we have the power to heal ourselves. It sounds very encouraging and it is also noted that for females, the oocyte should be able to accomplish the same thing.

Also, Living Cell Technologies has just been granted the right to administer its Diabecell product in Russia. This is the encapsulated pig islet cells. The procedure costs $150,000 now, but should decrease as more people opt to try this. This is important because it will increase the number of people who can try it and therefore increase our knowledge about the treatment in general.

Other good news is that the Special Diabetes Program has passed in both the House and the Senate. This is good news because it is a pledge of $150 million dollars for two years. This provides funding for many cure based research projects. I'm hoping it will open the door for many more clinical trials.

These are my kids on the Pacific Ocean. Becky's birthday present was plane tickets to go see Gary and Cassie in CA.

Below is an islet/stem cell that I thought was just beautiful.

The naked dream of diabetics?

2010-12-08T17:07:00.000-05:00

I have had this dream many times. One day several years ago, I think I made some sense of it. Here's the dream:

I am somewhere in a public place. I'm all or partially naked. I have to get from where I am to somewhere else. I believe that I can make this journey with no one realizing that anything is out of the ordinary. I just have to be confident and behave as if everything is just fine. That's the dream. I always pull it off. No one ever says anything or regards me as if anything is wrong at all. I'm very stressed, but I can cover that with words and actions. The need for isolation is intense.

Sound familiar? If you are a diabetic, this is what it feels like to suddenly have a low. You know that you are vulnerable and exposed, but no one else seems to. You can have a reflexive conversation, one in which you are able to parrot a few words back. You can answer simple questions. You can walk. You just have to really concentrate about what you are trying to do. The place that you are going is to where you know there is food.

I haven't had this dream in the nearly two and a half years since my islet cell transplant. Before that, I probably had it about a dozen times in the last 5 years.

Now that I am back using some insulin, I have decided to do things a little differently this second time around. I'm attempting to be more open about how I am feeling. I even had a long talk with my supervisor at work. We developed a plan of action for if I become low at work and have to stop and take some time to get back to normal. There will probably be other adjustments that I will make in my behavior like this. I'm going to be easier on myself. This time, I know its not just my inability to dose my insulin adequately or just the aging process. It really is hard to get it right every time.

I had the dream where I was naked a few nights ago. I asked for help and someone gave me some clothes with no judgement or hesitation.

Diabetes Transplant Summit - Part 3

2010-11-25T09:38:00.001-05:00

We made our way in to the larger meeting room where the actual Summit was to occur. The room was arranged with a podium beside a long table facing the audience. There were about 300 people in the audience. We were told that there would be people with various connections to diabetes. There were physicians and researchers, diabetes educators, and patients and their families.

Dr. Bortz gave an introductory speech that was very compelling. His perspective was how important this was to our health and well being and how fortunate we were to have had this option available to us.

Dr. Hering spoke first. He explained how islet cell transplants enable diabetics to live a healthy life both in the present and offered a much brighter future. He had slides that showed some recent results of how complications can actualy be reversed following islet cell transplantation. Another slide compared the difference in managing diabetes by tight control using current methods such as the pump and continuous monitor with that of transplant patients. The difference, not surprisingly was huge. Another slide showed the CITR (Collaborative Islet Transplant Registry) which includes data from all of the transplant centers results to that of the U. Minnesota (SDI). I might be biased, but I wasn't surprised to see that the Minnesota results fared better.

I was the first recipient speaker. We had decided that we would speak from our seats instead of the podium. It was probably a good thing, because my nerves were getting to me. Mary had to reassure me instead of vice versa which is what we had planned.

I began by thanking the Diabetes Research and Wellness Foundation for putting this on. We all think that this is such an important message to relate. We are in a very unique position to be able to offer hope to people who are in need of some. I commented on something that Dr. Bortz had said in his introduction comparing us to the miners in Chile who survived their ordeal thanks to a lifeline. I had described my transplant several times as the feeling that I had made a miraculous escape from a place that I didn't want to be. Then I told of how I had first seen the pig picture that led me to the Spring Point Project and then to the U. Minnesota site. I attempted to describe the freedoms that were allowed after I no longer needed to be on insulin. I compared my former path of controlling my diabetes with the mechanics offered by the pump and continuous monitor to the biological treatment of a transplant. It is like the comparison of Pinocchio and a real boy. I feel that this is a real and complete adjustment of my body's physiology. I tried to explain how it feels to have so much more energy. Some of these things you really have to experience to understand. I related that I now need to use a small dose of insulin. I admitted that this was frustrating, but that I understand that there are no guarantees at this point. Its just part of being treated in a clinical trial. The important thing is that I can still control my blood sugars. I ended by saying that if these islet cell don't last forever that I will go back to where I began and see if I can get pig islets cells after all.

Next was Mary Buche. She is the one of us who has remained insulin independent. She spoke of the many ways that her life has changed since her transplant in 2007. The part that struck me the most deeply was when she said that her coworkers who knew her well could tell when her blood sugar was low even when she could not. They would tell her to go sit down and test her blood sugar. When she did, it would be very low. She also had one incident when her son had to call 911 for her when she was experiencing a severe low. Since then, she became even more afraid of having lows to the point of keeping her BGs in the 150 range.

Dave Thoen was the third one of us to speak. He has received two islet cell transplants. One in 2008 and the second in 2009. He spoke of how difficult it was before the transplant because of his hypoglycemia unawareness. He would be fine one moment and low the next. Unfortunately, when he was very low, he would experience seizures. During one of his lows, his 3 year old son was able to help him through it. He said that was a low point for him in dealing with his diabetes and that he remembers thinking that his son might one day have to care for him, but not at age 3!

Ellen Berty was next. She was the only local recipient having had hers performed at the NIH Hospitals in 2001. Her stories were of driving incidents. She would feel a low coming on and stop her car wherever she might be. Sometimes in the middle of the road. The local police and paramedics who came to revive her came to know her well. She has written a book about her transplant experience. Its called I Used to Have Type I Diabetes: Kiss My Islets. If the book is as animated as she is, it will be very interesting. I intend to find out.

Gary Kleiman had his transplant at the DRI. He also has had two kidney transplants, one from his mother and one from his brother. He said his family is afraid to have reunions anymore. He had his transplant at the time of his second kidney transplant in 2002. His background with the DRI makes him very knowledgeable about the transplant process and a very credible speaker. He also seems genuinely pleased with his results. He is a strong diabetes research advocate.

Karla was the last speaker. She also had her transplant at the DRI in 2005. Her story began early in her life. She was diagnosed at age 6. She had one incident with a low that sent her to the emergency room where they found her blood sugar at 10. She was very lucky to have survived that. Hearing this also made me feel for her parents. It must have been a constant fear for them for so many years. She does not take any insulin at this point, but does take one unit of Byetta before breakfast and dinner.

Our stories were varied in some ways. Different ages of onset, different drugs, different diets, and so on. We all have different lives but have this one gigantic part that we share. The common threads that I noticed were: physically- we had all lost weight and not gained it all back. We all seemed to feel very lucky to have had this opportunity and very compelled to tell others about it. We all had the highest regard for our doctors. None of us seemed to have any serious problems with the immunosuppressants. Our ages were similar. We don't take any of this for granted.

A question and answer period followed our talks. Members of the audience formed a line at a microphone and asked about what interested them. Many of the questions were medical and Dr. Hering fielded those. Looking at the audience, I noticed that when Dr. Hering spoke, everyone leaned in to catch every word. He answered questions about when this might be available to everyone, about encapsulation of islets, the success rates of the transplants and many others.

The questions covered many aspects of our experiences. People wanted to know about the drugs that we took and their side effects, about our weight, how we decided to do this, how we felt now, and more. We answered questions that we had experience with or opinion on. Sometimes several of us would give our thoughts on a question. Several questions were on behalf of a family member. Many people had never heard of islet cell transplants before the announcement of this summit.

Then it was over. We were able to speak directly to some of the members of the audience who approached us. I was able to exchange contact information with a few of the panelists. I hope to establish contact with each of them. It was an incredible experience that I will never forget. I felt extremely honored to be there for many reasons and had a wonderful time. I wish I could go back and relive it again and am hoping that I can in part by watching the video that was recorded during the various parts of the day. I'll post what I can here.

I'm so grateful to the Diabetes Research and Wellness Foundation for putting this summit together. I hope that the goal of spreading this message is reached to the fullest. I believe that doing this is an important step in reaching the cure which is what we all want. This message might serve to encourage more people to try this option and if not, to at least have hope that the cure is within reach. I also hope that this will encourage funding and advocacy because these things are all needed to fuel the fire that is being created by these incredible researchers.

Diabetes Transplant Summit experience Part 2

2010-11-18T16:51:00.009-05:00

This is going to be a work in progress for awhile. I'm still hoping to get some more pictures. My camera must not have been set correctly during most of this. (see below).

After the TV interview and during breakfast, I was able to meet Mary Buche, a Minnesota transplant patient, and her husband Joe. They joined Dr. Hering and me for the rest of our breakfast. Mary and I connected immediately. We were both so excited for the Summit and to be able to share and compare our transplant experiences with each other. She had her transplant in 2007 and is over 3 years insulin free now. She takes Myfortic and Prograf for immunosuppression and has no side effects other than an occasional mouth sore.

After breakfast, I joined Mary and Joe for a tour of the DC area. We found out that you are not supposed to take pictures of the Pentagon. A nice young police officer stopped me and watched as I very ineptly tried to delete my pictures. After all the buttons I pushed to accomplish that, its no wonder my camera was in a strange setting later for the Summit. We also toured a botanical garden and drove around the city. I think we got lost a few times, but neither one of us cared or was even very aware. We were so intent on learning all that we could from and about each other. Joe was a patient and very competent tour guide. He seemed to just enjoy us enjoying each other. We found that we both have the highest regard for the people at the SDI. We both love the movie Forrest Gump. We recognized that fountain pool from that movie. We feel insulted when people tell us disapprovingly how thin we are. We take our diet and exercise seriously. We are both health care professionals. She is a nurse, me a medical technologist. We agree that having this background helps us to understand the process and to communicate with the transplant staff.

When we returned to the Marriott hotel, we sat outside to worship the sun and have a diet Coke. It was a nice sunny and warm afternoon. When we went inside, Dave Thoen was just arriving. He is the other Minnesota patient. I had met Dave before and was looking forward to seeing him again. We correspond through email and I really appreciate having him to consult with. We are in the same transplant protocol and our experiences are very similar. He has had two transplants and is currently taking just 2 units of Lantus. We both started back on insulin at about the same time. He was able to tolerate the Cellcept, and is still taking that and Prograf. Dave and Mary both live in Minneapolis. I'm hoping that we can get together again while I am up there for a future clinic visit.

I went back to my room and found a message telling me that they are ready to start the individual interviews. I quickly changed and went to the lobby to find out about this. The interview was fairly casual. It was a one on one with questions about my experience. Many of them covered topics that I was planning on talking about during my turn during the Summit. One of the questions was about what it was like being in a clinical trial. I had intended to discuss this later, but my nerves made me forget this part. So I was glad that I had a chance to say how much I enjoyed feeling like an important part of the research team and how well taken care of I was. I'm really hoping to get a copy of all of these interviews. I think we were all asked the same questions and it will be interesting to see how we compare.

The other recipients began to arrive for the interviews. I met Karla Edge first. She is a patient from the DRI in Miami and had her transplant in 2005. She takes one unit of Byetta before breakfast and supper, but is otherwise insulin free. I loved her southern accent. She has been diabetic since she was 6 and is extremely pleased with hew new life. Next, I met Gary Kleiman. He had his transplant at the DRI as well. He also had two kidney transplants and has been on immunosuppressants for most of his life. He is the Executive Director of Medical Development at the DRI. He is very knowledgeable about research toward the cure and I'm already looking forward to some discussions with him about this. We were all gathered in a hallway and kept having to be shushed while the last interviews were being recorded nearby. It was just so exciting to all be together. Except for posing for a few pictures, we were left to ourselves for awhile. I think it was quite obvious to those around us how important this time was to each of us. This poster was in the hallway.

We were summoned into one of the banquet rooms where the Meet and Greet was to occur. Here we all met Ellen Berty. She had her transplant at the NIH in 2001. She was insulin free for a few years, but now takes a small dose of insulin every day. She was the farthest post-transplant of us all. I enjoyed meeting her husband as well. He was a psychologist and was interested in the behavior of people who were experiencing low blood sugar. He says that there seem to be parallels between low blood sugar and lower IQ. I told him that I always felt like my IQ was probably about the same as my blood sugar at low levels. If only this was true at the higher levels! During this time, we were able to gather together and to meet other interesting people who were involved in the Summit and diabetes research. It all went so fast. Mary and I had determined that a glass of wine would be of benefit before we gave our talks at the Summit part. Unfortunately, I lost mine somewhere in my travels.

We gathered into various groups for pictures. And then we went into the large banquet room to prepare for the Summit.

The six islet cell recipients on the left.

The Diabetes Research and Wellness Foundation staff with the recipients, family members, and Drs. Hering and Bortz below.

Diabetes Transplant Summit experience - Part 1

2010-11-12T13:22:00.001-05:00

I'm still just glowing from my experiences yesterday here in Bethesda. It was a day full of new and exciting opportunities. Beyond that, it felt like I was an important part of a group of people with a common desire to show the world how islet cell transplantation can change lives.

The day began at 7am. Andi Stancik, the executive director of the Diabetes Research and Wellness Foundation picked up Dr. Hering and me at our hotel and transported us to her office which is in the same building as the Fox TV station. We arrived early and were able to use the time planning what to say and just getting to know each other. It was very special for me to be able to spend time with Dr. Hering. Besides being dynamic, he is so personable that I was able to feel comfortable with him. What an opportunity to be involved with a project such as this with someone that I admire so much. Its an extraordinary experience that I enjoyed in the moment and will enjoy thinking back on.

During this time, I was also introduced to Dr. Walter Bortz. Dr. Bortz has written several books and led a very interesting life. He recently ran the Boston Marathon at age 80. He was the moderator of the Transplant Summit and kept us all under control and entertained.

The TV interview went well. Here is the link to our segment on Fox at 5. I was pretty nervous, but managed to get through it. We were provided with possible questions which helped a lot. Dr. Hering talked about the science of islet cell transplants and I told of my experience. I have never been in a television studio before and that was interesting. Its not what it looks like on TV. The cameras make things look like the various sections are all linked together. Actually they are separate islands. The lighting was interesting too. It really held things together. The newscasters were very friendly and accommodating and I felt as much at ease as possible. I watched them again this morning and they seemed somehow different and more professionally distant than they were in person.

When we returned to the hotel, Dr. Hering invited me to join him for breakfast. I, of course, brought up the pig islet cells and he sounded very pleased with how the study was progressing. He said that two transplants would be occurring today (in monkeys, not humans yet). He is hoping to get enough transplants performed to get FDA approval to try with humans possibly sometime next year.

I have to temporarily end here and get to the airport. I hope to get some pictures and a detailed description of the Transplant Summit soon. We are heading to Tampa this evening with some friends. I can't wait to see the palm trees and smell some salt air. What a week!

D-Blog Day and my 6 thoughts about diabetes

2010-11-09T20:57:00.000-05:00

November 9th is D-blog Day. The topic for this year is 6 things I would like to tell people about diabetes.

1. Diabetes thinks it is immune to biological rules. Any precise calculations as to how insulin should affect glucose levels is completely ignored.

2. Diabetes never takes a vacation or even a break. That's ok because it doesn't really deserve one.

3. What might work for one person, rarely works for another. And it hurts deeply to hear that following a diet and exercising regularly will work for you.

4. Because of #s 1, 2, and 3, Diabetics are strong. Parents of diabetic children might be the strongest of us all.

5. Because of #4, you might feel like you are losing all of the battles, but you are winning the war.

6. The cure WILL come in our lifetime. Believe in #5 and you will be ready for it when it gets here.

This probably reflects my feelings about having my feet in two different worlds right now. Now that I am taking some insulin, I'm reliving so many memories. But at the same time, I feel very hopeful for the future. I'm getting ready for the Transplant Summit on Thursday. Ironically, I started on insulin after I said I would speak at the Summit. At first, I believed that the timing of this could not have been worse. There were things that I could no longer say. I'm no longer insulin independent. Now that I have rewritten my talk a few times over, I realize that the timing is perfect for me. It has made me reflect on what I still have and remember so many positive parts of this journey. I still feel just great and with the help of my islets, I am still in control. I feel very healthy and very grateful for this entire experience. I'm looking forward to the opportunity to share my thoughts and feelings with people who are looking for hope.

Islets and Insuln

2010-10-28T19:08:00.001-04:00

I have been taking insulin for about a month now. I began with the Lantus and then added some Novolog before meals. My dose seems to be holding steady at 5u of Lantus/day and 1u of Novolog before each meal. The combination seems to be working well. My numbers have been really good. I have been about 100 before breakfast and my postprandials are under 180 and many are in the 120-130 range.

After the initial few doses of the Novolog, I stopped getting that tired feeling. It has only happened one other time since. It was on a day when my post breakfast reading was 108. Its a lot like the old days when I would see a reading in that range and know I might be in trouble.

At my recent visit, my endo added a C-peptide to my tests to see how that was faring. It was 0.34 which is low. I wondered if the insulin that I now take might have an effect on that reading and e-mailed Janet and Dr. Bellin with that question. The answer was that yes it does. It makes sense that my islets would not need to work as hard now that they are supplemented with the insulin. I hope that they are enjoying this rest and are using this time to regroup or regenerate or recuperate or whatever it is that they are needing to do.

I'm getting myself prepared for the Diabetes Transplant Summit. My involvement has progressed. Now I'm going to do an interview that morning along with Dr. Hering on one of the local stations. I get overwhelmed just thinking about it, but what an opportunity. For the chance to stand beside my hero and talk about something that I feel so strongly about, I can withstand a few butterflies.

On the research front, the Sernova corp. has signed on Dr. Shapiro of the Edmonton Protocol and more recently Dr. Sutherland from U. Minnesota. This is the islet sheet project where a pouch containing islet cells is implanted in the person and is permeable to glucose and insulin, but not to antibodies that would destroy it. This means that no immunosuppression is necessary and it is replaceable if/when the islets give out. And they use pig islet cells!

We had a good time carving these.

Each Islet is Precious

2010-10-13T12:29:00.001-04:00

The title is a quote from my Endo. I saw him on Monday. It was an appointment with high and low points. It began with a series of bad news. Before I see him, I have my A1c and glucose checked and my blood pressure taken. My blood pressure was high. I usually run about 110/60. I was about 150/80. Then my A1c result was 7.1. At my last visit there it was 5.9. When the doctor came in and saw my A1c and my blood sugar logs, he suggested trying some Novolog (fast acting insulin) before each meal. This is in addition to the Lantus (slow acting insulin) that I had already been taking. His feeling was that the high postprandials were very stressful to my islets. The Lantus was helping my fasting BGs, but was not lowering my postprandials effectively. He is young and speaks with an accent and when he said that we have to protect my islets because "each little islet cell is precious", it really made me smile. Thats exactly how I feel. When I told him about my being a recipient speaker at the Transplant Summit, he was really excited. He did some of his education in Bethesda and has fond feelings for this area. We enjoyed a nice post visit discussion about that. He even shook my hand for doing this. Pretty neat. These were the high points.

Yesterday was day 1 with the Novolog. It paralleled the high and low points of my visit. The Novalog worked like a charm on my postprandials. I was 101, 112, and 93 post meals. Perfect. The downside was that I could really sense the insulin in my body. At about 9:30am, I felt some low BG symptoms. I felt tired, hungry and even light-headed. I had to stop work because I was having trouble concentrating. I tested and was 94. Not what I expected at all. The same thing happened on Sunday. We had been kayaking and at the end I felt low. I tested and found I was 96. That time, I questioned the meter. I must just be hypersensitive to these symptoms because its been so long since I have experienced them. I'm worried about having this problem at work. We're busy now, which is a good thing, but doesn't leave time for having to stop because of BG problems. Hopefully, I can get this under control. The hypoglycemia unawareness that I would experience before my transplant was dangerous, but less likely to interrupt my day.

I have been checking my blood pressure at home and its back to normal. I think that I was apprehensive/disappointed with my A1c at the checkup. Its amazing what the mind can do to the body.

The other downside of the insulin is that my energy level seems lower. I could really tell on my walk yesterday. I wasn't really tired, just not as vigorous. Hopefully, time will help this as well. I tried lowering my Lantus from 6 to 5 units to see if that will help how I feel.

This is a tough time for me. Its hard facing the insulin and the feeling like my past and future are beginning to converge. I am as always, so grateful to my support system. Gary is always there for me. Discussing the insulin with Janet was a sad thing, but she summoned her skills to put things into a brighter perspective. I can email Sandra and always receive an empathetic and knowledgeable response. I'm looking forward to seeing Dave at the Transplant Summit next month. We can add that experience to the list that we already have in common.

This is a wonderful cornhole game that Gary made me for my birthday.

Islet Cell Transplant - Chapter 2

2010-10-03T12:41:00.001-04:00

After worrying over my increasing blood sugars for some time now, it has finally become apparent that the time has come to supplement my cells with some insulin. Its mostly heartbreaking, but a little relieving. It has become more and more stressful to see those higher numbers appearing on my glucose monitor. I will enjoy seeing a higher percentage of good numbers. Also, this will lead to a better next A1c.

I did my best to postpone or prevent this. I've been exercising and cutting carbs as much as possible. I'm now on my third painful stressed or pulled muscle. It started with my back, then my foot and now my back/neck again. With hindsight, I know they were all due to being overworked. Exercise does really help, but there are limits.

So, I am now on day 4 of insulin. I started with 3 units of Lantus per day. Yesterday, I had some high postprandials (220s) so increased to 4 units. It seems to be helping. I really don't mind the injections and this is probably not enough to cause any serious low blood sugars, I just hate to give up being insulin free and having the ability to say so. There is hope that this could be temporary. If the islets get some rest, maybe they will become stronger. Time will tell. In the mean time, I am still exercising and watching what I eat. Partly in hope to need less insulin, and partly to be able to judge how the insulin is affecting my numbers. I was able to gain a few pounds throughout all of this. I was concerned that it might have gone the other way. Its easy to keep blood sugars lower by not eating as much and that is so tempting to do. And its still feels like such a privilege to have the ability to do so. But, I was really pushing the meat, cheeses, and nuts and I guess that worked.

This is a painful post to have to write, but also an important one. The whole idea of this blog was to chronicle my experience, the good and the bad. Good news is just so much more fun to share.

Of course, I'm not going through this alone. Janet and Dr. Bellin are as disappointed as I am. We all understand each other well enough to know that we aren't disappointed in each other, or even with the transplant, just disappointed. I get just the right mix of sympathy, encouragement, and optimism from them. Its also so nice to be able to share this with Dave, another transplant patient from SDI.

Yesterday was my JDRF walk, number two. I didn't have walkers for this one. I was handing out information at the Government Advocacy booth. I displayed my poster again and enjoyed meeting people and sharing my experience with them. Again, it was the mothers of diabetic children who were the most excited to hear about it. It turned out to be a cold, rainy day, but there were still a lot of people who came for the walk. Its very heartwarming to see such dedication and support.

Here are my current fall flowers. A new season and a new chapter.

JDRF walk - number one

2010-09-26T12:14:00.000-04:00

Sunday was my first JDRF walk. I think it all came together very well. I had 18 people there walking with me and raised over $700. The weather that day started out cold and gloomy, but was warm and sunny by the time everything began. It was difficult being the leader and now really knowing what I was doing. Next year, I'll know better how to organize both before and during the event.

I made a poster to show what kinds of research the JDRF was sponsoring. I stood by it and explained to anyone who had questions what I was trying to show. Again, it was the parents of diabetic children who were the most drawn to the idea. I also had a nice conversation with a few of the other volunteers about my experience. One was a new doctor who is specializing in treating diabetics. She knew of the procedure and asked some good questions. I asked her if she would recommend it to her patients. She says that she would inform them, but that the timing of the surgery would have to be up to the patient. I agreed with that. Its such a complicated decision.

The walk itself was short. They had some problems with fallen trees and had to shorten the course. I was a little disappointed by that. Some of my family had travelled a long way for this and I didn't get to spend much time with them. We did decide to go out to eat afterwards which allowed us some time together.

My sister Liz made the t-shirts. They came out really well. This is the design. Notice the pig in one of the shoes.

Here is my Mom and me standing in front of my poster.

This is the entire walk group.

Cassie came home from San diego for a visit. She timed her trip to coincide with my walk. Becky was very supportive too. I was really touched.

I'm still struggling with high blood sugars. The option to begin taking a small amount of insulin is being considered again. It would be disappointing, I admit. But, I know that it would be a tradeoff to seeing better numbers and a lower A1c.

Diabetes Transplant Summit at Diabetes Research and Wellness Foundation

2010-09-18T11:08:00.000-04:00

The Diabetes Research and Wellness Foundation is hosting a Diabetes Transplant Summit. I have been invited to be one of the islet cell transplant recipients there to share my story. I am extremely honored and thrilled to have this opportunity. Drs. Hering (my doctor) and Sutherland will be there to tell about the research. As of now, there are four recipients, including myself.

I think this is such an important thing to do. There are so many people, including the diabetic population, that are unaware of this research and how close we really are to developing it into the cure. I feel my story is so important because it offers so much hope. I am really excited to be able to share it. I'm anxious just to hear what both Dr. Hering and Dr. Sutherland have to say. It is just amazing that I will actually be a part of it all.

Here is the link to the DRWF pamphlet. Take a look. Come to it if if you are able. It takes place on Nov. 12 in Bethesda, MD.

Eggs,bikes,and Tylenol PM

2010-09-09T17:58:00.000-04:00

I have been struggling with some higher blood sugars lately. About 10 days ago, it got suddenly worse. My postprandials had been going higher for awhile, but then my fastings started to hover in the 130s. I became worried enough to contact Janet and then Dr. Bellin about the situation. After some discussion, it was decided to try a lower carb breakfast and to try not to worry about it too much. I know that stress can cause higher BGs, and seeing those high numbers was definitely causing some stress. This all occurred right before Labor Day weekend and it was decided to wait a few days and see if my numbers improved. If not, it might be time to try some insulin. It would break my heart a little to do this, but would bring down my numbers for sure.

When I told Gary about this, he asked if my sleeping problems might have something to do with the higher numbers? I realized that he might be right about that. So I started taking 2 Tylenol PMs at bedtime. I had been taking them before, but only if I really felt that I needed to. Its been almost a week now since I started all of this and my numbers are better. I know its not very scientific to try three things at once, but at that point, I was ready for any good idea.

So now, I'm having higher protein and fewer carb breakfasts, bike rides or long walks during the day, and Tylenol PM at night. My fastings are definitely better. I'm still having some higher postprandials, (200-250) but not as many. The exercise really helps. I'm planning on tapering off of the Tylenol PM and keeping up with the breakfasts and the exercising for awhile. I'm keeping a close watch on my weight during all of this.

The Labor Day weekend was wonderful. I was really hoping that I would be too busy to worry about my BGs too much, and it really worked out that way. We had a wedding on Saturday. We went to Kelly's Island with some friends on Sunday. We had fun playing some horseshoes there. And on Monday, we went kayaking on the Maumee River and then staffed a Donate Life Ohio booth at the Fulton county fair. Blake Shelton was playing in the background.

Thinking back

2010-08-29T12:23:00.003-04:00

Today, I am actually thinking about my back because it is killing me. I have my very first and hopefully last back issue. I woke up in the middle of the night 3 nights ago with an intense pain in my back/shoulder area. At first I thought it was a cramp because it was so sudden, but I couldn't make it go away be stretching it out. With the help of ibuprofin, heat, and some massaging, it is getting better now. I'm hoping that by tomorrow, I will be back to normal.

But, yesterday while I was lamenting about all of the plans that my back was causing me to miss, it made me recall how often I had to miss things before my transplant. How many times I sat on the couch at home waiting for my blood sugar to get high enough for me to get up and do what I wanted/needed to do. How many times at work I had to stop whatever I was doing, sometimes asking a coworker to finish something I had started, while I left to eat something and wait to feel alert enough to continue working. How many times I would be enjoying a sport or activity and realize that I am weak and confused and have to stop. It was frustrating and maddening. And it happened so often that it almost felt normal.

That NEVER happens anymore. Its one of the nicest parts of this experience. That and not having to eat if I don't want to. And there is probably a connection there. I used to say that insulin is the treatment and also the demon. Food used to be the same. More food would mean more insulin.

So, suddenly this temporary back issue doesn't seem so bad. I'm going to suck it up and go on a walk today and enjoy every step. We also have plans for lunch with friends and floating on a pond later. Not such a bad weekend.

My blood sugars have been steady lately. The post-prandials are still running high, but the fastings are improving.

I'll add some pictures of our last kayak excursion to cheer me up about having to miss our trip yesterday.

And one from our backyard while it is at its summer peak. We have two Ash trees that are infected with the Emerald Ash Borer that we will probably be losing soon.

Transplant update

2010-08-08T21:21:00.001-04:00

Its been a busy few weeks since my visit to Minneapolis. The day after we came back home from that trip, we started another to Myrtle Beach, SC. My family vacation was there and the entire clan, except for our son Gary made it there. We had a great time full of playing in the waves, walking the beach, and lots of good eating and fun games. My blood sugars were really good during that time. It was wonderful. I don't know if it was all the exercise or the relaxation, but whatever it was, it made my islets happy.

Then I came back to busy days at work and a urinary tract infection. The infection is all cleared up now. My doctor here put me on Cipro and that did the trick. I'm still on it. My blood sugars are back to being higher and I'm really hoping that its due to the infection and the Cipro. Time will tell.

I got the results back from the kidney function testing performed at my checkup. A dye was injected through my IV and then my blood was drawn periodically for a few hours to examine how long and how completely my kidneys filtered it out. The numbers don't mean much to me, but I am told that my results were excellent. This is really good because the immunosuppressants that I am on now can be stressful to kidneys.

I have decided to volunteer at our local organ donation group, Donate Life Ohio. I went to a meeting yesterday and met a few interesting people. There were recipients and their families as well as donors and theirs. Even some living donors. Here are the latest statistics about waiting lists for organ transplants. I think I'll enjoy this new project. My first stint will be at a booth at a nearby county fair. I was lucky enough to get a booth near where Blake Shelton will be performing. Ironically, I missed seeing his show 2 years ago while I was waylaid in Minnesota for my transplant. A small price to pay.

Here is a family picture at MB and a water lilly from a recent kayaking trip.

7/21/10 Two year post islet cell transplant visit

2010-07-30T17:36:00.005-04:00

Wednesday, 7/21/10 was the second anniversary of my islet cell transplant. We drove to Minneapolis for my 2 year check up at the clinic. We were also celebrating our 30th wedding anniversary, so we combined two very big milestones into a weeklong celebration. We left on Saturday armed with kayaks, bikes, golf clubs, and blood sugar logs. We came home on Wednesday tired, but happy.

We stayed the first two nights in Wisconsin and spent most of those first days doing our outdoor activities. We are really enjoying our kayaks and looked like quite a site, with our blue and orange kayaks strapped to our roof. We drove to Minn. on Monday and were invited to dinner by Camille, the woman who saw me through my JDRF Promise meeting with Rep. Latta. We had a wonderful time and meal and enjoyed meeting some friends of theirs. Her husband was also a transplant recipient. We talked about my experience and even made a video of my talking about my experience and the Promise campaign. I'll post it here. It is really strange to see myself, but it is for a great cause. I'm lucky to be in the position to be able to tell a story that is so compelling. Mine is the video on the bottom of the page.

Tuesday was my visit to the clinic. I'm still not sure why, but my blood sugar was 146 on awaking. The highest fasting ever. It went up to 185 an hour later and then back down to 123. That has never happened before. I feel more excited than nervous when I'm there.

The testing for this visit consisted of a mixed meal test and a glomerular filtration rate test to measure kidney function, as well as the routine tests. Dr. Bellin came in to do my checkup and answer any questions. I had very few this time. I always enjoy spending time with Janet as she gets caught up with all of the documentation and gives me my cognitive testing (aka the apple, table, penny test). My two year gift to the staff this year was window clings in the same design as the t-shirts from last year.

Here are most of my lab results. I'll post the rest when I get them.

Chemistry tests. All normal except
Cholesterol 202 But HDL is 95 which makes that OK
AST 46 normal is 0-45

Creatinine 0.80 for comparison
The Glomerular Filtration Rate result was 76 Normal is >60

For the CBC
WBC is 2.4 Absolute neutrophils is 2.0
Hemoglobin 11.9.

Prograf was ? which is within range.

Rapamune was ?
I have decreased my dose from 6 to 5 pills/day.

CMV test was negative, so no more Valcyte.

A1c is 6.4 which is up from 6.2 on the 21 mos. visit. (Normal is 4-6.) I am hoping it will come down again, but if it stays steady, that will be OK too.

Before breakfast: blood sugar is 123 C-peptide is 1.34

After breakfast (90 min.) blood sugar is ? C-peptide is 2.43

After my checkup, we kayaked on Lake Harriet which happens to be where my Mom grew up. It was in a very pretty setting and there were many other people out enjoying the day sailing on the lake or running/walking around it. We had a race which left me sore for the whole next day.

After our kayaking, we met another Minn. islet cell transplant recipient, Dave, and his wife for dinner. We had fun sharing our experiences and it was very interesting hearing stories from the spouses' perspectives.

Here is a summer picture of the Miss. River where I always take my walk. The one on the right is an area outside the hospital where Gary and I spent a lot of time during the week of my transplant.

Quite a week

2010-07-15T18:21:00.000-04:00

I have had a roller coaster of a week. This roller coaster is different from the ones that I used to experience with my blood sugars. This was filled with life experiences.

I'll begin with the wedding of a friend's daughter on Saturday. It was a happy experience to see two such nice families come together and was also a time of seeing old friends who I don't see enough of. It was a wonderful evening.

On Monday, Gary and I celebrated our 30th wedding anniversary. Its hard to believe its been that long and we still have so much fun together. We had a nice dinner and then played 9 holes of golf. We will continue our celebration on our trip to Minneapolis.

On Tuesday, we had to say goodbye to our beloved dog, Lucky. She had been suffering with some severe arthritis pain and seizures for the last few years. It was a very difficult decision, but we are glad that she is no longer in pain or living with all of the medication she needed just to make it through the day. We will miss her terribly.

On Wednesday, I asked my work group to celebrate the 2 year anniversary of my transplant with me. We went out for dinner and drinks and had a great time. They got me a card with some very heartwarming words that they had written. I am so lucky to have them. They helped me get through many tough days at work before my transplant and have been so pleased and excited for me with this whole experience.

Today, I attended a JDRF walk meeting for team captains. I've started getting mine organized, but had some questions about it. I was pleased to meet a few people who have done this before and who I can go to for help. I also got to share my transplant story with the people at my table. Its always a rewarding experience to be able to share this feeling of hope.

We leave for Minneapolis on Saturday morning. We will spend two days in Wisconsin on the way doing some kayaking, bike riding, and maybe even some golfing. We both enjoy all of these things and it makes it so special to be able to enjoy them with this nice healthy body. No blood sugar issues of the seemingly distant past, or stomach issues of the more recent. Just good exercise and hopefully lots of sunshine.

My clinic appt. is on Tuesday. I'm very anxious to see how all of my testing comes out. I've had some higher blood sugars since the last visit, so I'm prepared for a higher A1c. But it will be very interesting to see how the C-peptides compare as well as the glucose tolerance testing and kidney function tests. The best part always, is seeing the people at the clinic. That will be the highlight of the trip. They really are something special.

My blood sugars over the last few days have been the best that I have seen in awhile. Life is Good.

This post warrants a pig picture.

Transplant update - feeling better

2010-07-10T14:08:00.002-04:00

I'm feeling better now, both physically and psychologically. At the time of my last posting, I was suffering from the headache, starting to feel tired, and higher blood sugars.

The headache lasted most of 4 days. When it finally receded, I was left with a sick feeling. I was extremely tired, had an upset stomach and just general malaise. My blood sugars were continuing to get higher and higher. I was even more worried about CMV. Maybe it just skipped the gradual onset and went right to the detectable symptoms. Then, my blood sugars started getting better. I had a 108 after breakfast instead of the 180-190s that I had been experiencing. I probably should have double checked that one, but decided to just enjoy it. Then I had a few other good numbers. And then I finally began to feel better.

In the 6 days since then, I have continued to get better. The sick feeling gradually disappeared and my blood sugars are continuing to get better. I still have a few higher ones than I like, but mostly they are better. I am definitely on a downward trend. It will be interesting to see how low I go.

Janet, the research coordinator, sent me a nice note when I let her know that I was feeling better. She said that this happens to other patients too. You can be sick or stressed and not even realize it. My normal state will probably continue to have its own fluctuations. Her words were very reassuring, as usual.

So, needless to say, I am very relieved. I know that I could start seeing higher numbers again at any time, but for now I will just enjoy the present circumstances. I am feeling just great again and looking forward to our two upcoming vacations. They both are centered around outdoor activities and I can't wait to experience them in the best health that I have been enjoying for many years.

Transplant update

2010-07-03T09:33:00.000-04:00

I'm still worrying over my higher blood sugars. It seems like my baseline has taken a shift upward. I still go below 100 sometimes before meals, but not as often. My postpradials have been higher too. I have had 4 over 200 now.

I still come back down, which means that my islet cells are still functioning. They are just now working as well as they once did. The upward trend came after the switch from Cellcept to Rapamune. That probably has something to do with it. It could be several factors though. I was taken off of the Cellcept because of the colonitis. Maybe I wasn't getting all of the nutrients from what I was eating. I think I was eating as much as I used to, but was still experiencing a steady loss of weight. Now I probably am absorbing all of the calories that I eat.

I still feel fine, which is the good part. I have energy and just feel healthy. So that's nice, but I can't blame the higher blood sugars on any type of infection. I did have a headache yesterday, which might account for the really bad numbers of yesterday. I was 146 before supper, 188 at bedtime and 143 this morning. That is the worst streak ever. It has led me to break down and call Janet. She is having Dr. Bellin call to discuss it with me. I'm anxious to see what she has to say.

Two days have passed, and I'm still not feeling well. I still have the headache and now nausea and fatigue. I must have caught something. And its now the 4th of July weekend, so I'm not happy about being laid up.

Yesterday when I began to feel worse, I called Janet again to let her know. Dr. Bellin called to see how I was doing. We discussed my symptoms and don't think its the CMV again. The CMV had a gradual onset and this is more sudden. I felt fine 4 days ago. I'm hoping that when the headache ends, the other symptoms will follow, but if I don't feel better soon, I'll have to go to a doctor.

I asked what she thought about my recent higher blood sugars. She says that she and Dr. Hering discussed that and decided that it would be too risky at this point to change immunosuppressants again. The concern is that it might cause a rejection. There is another drug similar to the Cellcept that I was on before. Its called Myfortic and has a coating to help prevent the stomach issues that caused me to have to give up on the Cellcept. That is the backup plan, but we are hoping that the Rapamune will still do the job. Another strategy that Dr. Bellin might consider is to lower my dose of Prograff. She says that sometimes it can have a detrimental effect on the islet cells.

I have my 2 year checkup in Minneapolis on the 20th. The timing couldn't be better. Hopefully, my numbers will be better by then, but if not, the testing should tell more precisely what the problem might be. And its always good for the moral support.

Well, bad new posts aren't nearly as much fun to write, but are an important part of the whole story. I'll end with some happier flower pictures from my garden. It has been a good summer for flowers. Plenty of both rain and sun. And here's one of my in my new kayak. We had fun trying them out last weekend.

Steps toward the cure

2010-06-23T07:20:00.000-04:00

There are so many different directions that the research towards the cure is heading. I'm going to try to summarize some of the ones that I think are the most promising. I will consider this a kind of time capsule that I can look back at in the years to come and see which one(s) were most successful.

The first is the artificial pancreas. This one is probably going to be the first to come to the general population. The JDRF is working hard to get this to fruition. It involves an insulin pump and a continuous glucose monitor that are electronically connected. The monitor will tell the pump how much insulin to deliver. I am least excited about this one because it is electronic technology. It will never be in the same real time as our bodies.

Islet cell transplantation is what I am experiencing. Its not considered the cure because it requires immunosuppression and is not permanent. As I have said many times before though, it sure seems close to the cure. I don't need insulin, the side effects of the immunosuppressants (which I have had the experience of 3 regimens now) are easier tolerated than those of insulin. They can make you uncomfortable, but not debilitated. This research will serve as a major stepping stone for what is to come. Here is a good summary of the field, and the CITR on the sidebar has the current information. Here is a list of some past, present, and future clinical trials.

Building on this research is the encapsulation of islet cells. This will eliminate the need for immunosuppression. The capsules will allow the glucose and insulin to pass through, but not the antibodies that are trying to destroy it. This sounds great, but it will probably be awhile before it becomes available because of difficulties in keeping the capsules viable.

A possible solution to some of these challenges is the Cell Pouch that has just been developed. This is a pouch of islet cells that is implanted under the skin. Its about the size of a credit card and has the same properties as the encapsulated islets, so no immunosuppression would be necessary. The nice thing about this is that it can be replaced when the islets are no longer viable. The worry that I have about how long this will last would not be an issue here. The patient would just go in for another pouch. The JDRF has not endorsed this yet. I'm not sure if they question its claims, or if they are still deciding.

Another huge problem is the availability of islet cells. A transplant like mine requires a cadaver pancreas. There are not enough of these to cover even a small percentage of diabetics who need them. So, to address this issue, xenotransplantation is being pursued. In the US, the Spring Point Project at the U. of Minnesota will be the first to try this. Pig islets can provide a continuous supply of islet cells. This will serve to relieve many diabetics of their health problems and will also enhance the research of islet cell transplantation in general because of all of the data collected from so many more patients. If islet transplantation is a stepping stone of the cure, pig islets will be the catalyst that gets us there faster.

A combination of some of these strategies that is taking place outside the US is happening at Living Cell Techologies in New Zealand. They are transplanting encapsulated pig islet cells. They have been having success with this and are continuing to try different approaches of this to see what works best. They were able to get the xenotransplantation approved before we could here. I have been following them for awhile and am very excited by what they are doing.

Another front of the research towards the cure is regeneration of islet cells. This would not involve any surgery or new cells. The goal is to get your body to remake its own islet cells. The potential problem with this would be in how to keep your immune system from destroying these cells again.

One of the more promising fields is that of stem cell therapy. There are two kinds of stem cells, embryonic and adult. The embryonic stem cells are very controversial and the research is way behind because of the restraints imposed by the Bush administration. Adult stem cells are derived from existing tissues and can be from your own tissue or from a donor. This research is moving more swiftly because there are no moral restraints. For the latest on Adult stem cell research, my fellow diabetes cure enthusiast and friend, Sandra, has the most update information as well as her own personal experience with her son.

Now I'll commit myself to how I think this will all play out. It will be a process that involves all of these approaches. I think that pig islets will be used for several, maybe many years. The encapsulation and pouch systems will allow for multiple transplants as necessary. The regeneration will help the Type 2 diabetics who still have some islet cells to regenerate. Then islets will be generated using stem cells. They will be from donors or pigs and will be encapsulated or in a pouch, but plentiful and able to be applied as necessary. The final cure will be derived from all of this and will involve stem cells of the patient. Islet cells will be made either within the patient's body or in a test tube and inserted into the pancreas. The immunosuppression problem will be solved so that they are safe there. The cells will last forever, or might require boosters which again will be of a noninvasive procedure.

Whatever the future holds, I still maintain that everything that involves new islet cells and a biological cure is a long journey away from using insulin, and a short step away from the cure.

Thoughts on the Cure

2010-06-03T23:49:00.000-04:00

I enjoyed the group blog week that I participated in last month. I had no idea that there were so many people writing about their experiences with diabetes. It was interesting reading and there are several that I will be following more closely. Of course, the topic that interested me the most was the last day's in which we all wrote about how life would be after the cure.

There was a variety of responses ranging from no hope to plans to celebrate. I started looking at them at random and then became so interested that I decided to read them all. Then I decided to start taking some notes and consolidating the responses. Over 80 people responded. These are the most common phrases:

Plans for a celebration 16
It would feel like a dream 10
It will not happen in my lifetime 7
I would appreciate the freedoms I would have 7
I believe it will happen 6
I would be so thankful 5
I have hope that it will happen 5
I will just live with having diabetes 5
There are parts of being diabetic that I would miss 5
I would enjoy not having these worries 5
If only it would happen 4
I would be so relieved 4
I can't even imagine a cure 3
I don't know 2
I would love to feel normal
I would love to be able to think of something else
I would jump at the chance
It hurts to wish for it
And my favorite from Typical type 1 from a mouse's perspective.

My perspective is so different now. Before my transplant, I couldn't even let my mind go all of the way there. It seemed like too much and too impossible of a wish. I guess I would have related to "It hurts to wish for it" the most. Even during the screening process for the clinical trial, it felt like such a long shot. Something that only happens to other people. Thats why I applied to four sites, to increase my odds.

Now I feel that this is almost like a dream. I have so many new freedoms. I am so thankful to those who have made this possible....... and on and on through most of the other phrases above. Even including the one about missing parts of being diabetic. It's an eerie feeling to be living my old dreams and those of so many others. I have very mixed emotions about it. I feel very lucky and even a little guilty because its something that I can't share. My identity is somewhat in limbo. Its hard to decide which is the real me; the diabetic me or the no longer diabetic me. Reading all of these thoughts that were written by people that I really respect makes me feel so strongly that a cure has to be available to everyone. And soon.

My next project is to organize some of the articles I've been reading and saving pertaining to the cure. There are some really exciting projects happening now. They all seem to be so promising. One of the things I like about working on this blog is thinking about how I will look back on some of these things that I have written in the years to come. This post will arouse some feelings I know. And it will be interesting to see if I was right about which research front will be the first to arrive.

I'm still feeling really good. My blood sugars have stabilized. They aren't as good as when I was on the Cellcept, but they're ok. If they stay where they are, I'll be very happy. My fastings range from about 80-120 and my post-prandials range from about 100-180. Dr. Bellin increased my Rapamune from 5 to 6mg/day. That seems to be helping, although I'm not really sure why.

Group Blog - Dream a little dream - life after a cure.

2010-05-16T12:04:00.000-04:00

This is the last day for the group blog and a logical place to end the week.
I am in the position to be able to describe how the cure feels. And its absolutely great.

I can live my life without having to worry about having my blood sugar dropping

for no reason
at an inconvenient time
without my knowledge
even though I just ate something that should have caused it to rise
while I'm driving

and the list goes on and on.

I can eat when I want and not eat if I don't want to which might be the best part.

I haven't really changed my diet much and I still exercise like before my transplant, but I don't have to worry about the amount of either. I still test my blood sugar about 6 times a day, mostly for the study, but I think I would almost that much anyway just to make sure everything is ok.

Even though I loved both my pump and my continuous monitor, I don't miss carrying them or maintaining them. I don't have to shop for clothes with pockets.

I actually can leave the house with no food in my possession. I never thought I would be able to do that. ever. But now I make a conscious decision not to. Low blood sugar, even with vigorous exercise is not an issue.

My mild retinopathy is gone.

Of course, there are two downsides.

One, this may not last forever. Its something that I acknowledge, but try not to dwell on too much. I know of several people who are several years out and there are a few patients at U. of Minn. who are about 10 years out. My competitive side is hoping to outdo them, but I hope it is a perpetual race.

Two, the immunosuppressives have some side effects. I think I have had my share of them. But I would still rather deal with them than insulin. Right now, I have no side effects at all. Life is very good.

I only hope that soon the cure will be available for everyone. I believe that my experience is a proof of how close we really are.

Group Blog - Diabetes snapshots

2010-05-15T09:24:00.002-04:00

These are the significant items that I have chosen to represent my present diabetes experience.

Pills.

Testing and recording my blood sugars.

Traveling to Minneapolis for my clinic visits.

Walking.

The T-shirt I made as a thank you to the staff at the Schulze Diabetes Institute where I had my transplant.

My hope for the future of pig islet cells.

And of course, Blogging

Group Blog - Lets Get Moving - exercise

2010-05-14T11:27:00.007-04:00

The day that I received my diagnosis of diabetes I was told to buy a pair of running shoes on my way home and start running five miles a day, every day. The doctor had read about a pro football player who didn't need to take insulin during football season because of all of the exercise he got during practice. He assured me that I probably would not lose my legs and sight if I followed this plan.

I didn't buy shoes that day. I was more inclined to go home and tell my husband that I was just diagnosed with an incurable disease.

But, the next day I did buy shoes and started running. Gary coaches track, so he knew how to get me started. I eventually worked up to two miles every day. I did that all four seasons, but I can't say I really enjoyed it. I never seemed to achieve the proverbial (to me) runner's high. After I had been running for a few years, I did run five miles with a few friends. I was surprised that I didn't feel any more tired than after two miles. I think it helped that I was running with two or three other people and we were talking and laughing for parts of it, so I was distracted from my tiredness and sweating. I don't like the sweating part of running either.

Then I got pregnant and had complications that made me have to stop running until my son was born.

About a year later, after I has adjusted to life with a baby, I decided that I should probably start up again. I ran about a mile before I remembered how much I did not enjoy this. I stopped and walked home.

I have walked almost every day since then. My son just turned 24. Again all four seasons. But I love my walk. I don't know how far I actually go, but it takes 30-45 minutes. I look forward to it and it affects the goodness of my day. I make a point to walk fast, because I know that walking is not aerobic. I'm starting some stretches and exercises to strengthen muscles because I have to worry about osteoporosis.

As far as how it affects my diabetes, only time will tell, but I think it must help. When I used my continuous monitor, I could see how it almost always brought my glucose levels down. Even more than I would have guessed. It also has to be good for my heart and circulatory system in general. Its definitely good for my mental health.

Since my transplant, I can still see how exercise affects my blood sugars. As I mentioned in the previous post, I still eat at regular times and in controlled amounts. I can tell when I have not had any exercise after a meal and when I have. Its just a good thing to do and I am glad that I enjoy something that is important to my daily and long term health.

My walking companion.

Group Blog - To Carb or Not to Carb

2010-05-13T19:46:00.000-04:00

This will be an interesting topic to compare with other diabetic bloggers. I just checked the list and there are a lot of people participating in this blog week. Its really a good idea.

Most diabetic diets are based on counting carbs. One carb unit is one slice of bread, a serving of milk, a small potato, and so on. Each diabetic has a ratio of insulin to carbs. Therefore, the fewer carbs eaten, the less insulin you need to take. Since insulin is not just the treatment, but the demon, it is favorable to take as little as necessary.

But carbs yield energy, so you need some. I tried to keep carbs to a minimum before my transplant. I would eat a very small bowl of high protein cereal (Special K High Protein) and sometimes some boost for breakfast. I would have yogurt or a slice of toast with peanut butter for a snack. Lunch was a Lean Cuisine with no more than 45 carbs in it or soup. Afternoon snack was crackers and cheese. Dinner was more varied, but about 45 carbs which included my milk. Then ice cream before bedtime. It was the best thing I found to get me through the night, and it satisfied my sweet tooth.

That was an ideal typical day. Not much variability except for supper. Of course, before the transplant there was literally never a typical day. Throw in orange juice or a granola bar if I was too low. Skip a snack or a carb if I was way high before a meal. And exercise lowers blood sugar and requires carbs for energy. It was all very complicated. My doctor would prescribe how to count carbs and balance with insulin. And I would be constantly adjusting for the variables. It felt like a very scientific crap shoot.

Today, I follow that same diet plan. The difference is that instead of trying to balance the insulin with the carbs and exercise, my new islets do that for me. And so much more efficiently. There are no more calculations because the islet cells are there to react immediately to the glucose that is presented to them. Timing is no longer a variable.

So, to answer the question at hand, I carb, but try to keep it to a minimum still. My new islets are working from my liver instead of my pancreas and are fewer in number than a nondiabetic. So I pamper them as much as possible. I don't eat high carb foods and I exercise to supplement their work.

Sometimes I ponder the "use it or lose it" theory and am thinking of experimenting a little with some higher carb foods to see if they bring my glucose levels down more quickly. It would be interesting if it did work like that. I might have to change some of my thinking.

Here are two scary things to see in your garden.

Group blog - My biggest supporter

2010-05-12T20:28:00.000-04:00

This is an easy one. My husband, Gary is my biggest supporter. He is one of those strong people who are easy to lean on. I asked him just the other day if it was a good thing or a bad thing to have your wife believe that you can do anything. He was at the time, trying to throw a mattress out of an upper story window of a rental house that we own. The mattress wouldn't fit, so he had to dismantle the window frame. Inside and out. Pull the mattress out the window onto the flat roof and lift it over the electric wire and throw it hard enough to not tear off the gutter on the way down. I said that I hope its mostly a good thing. At the time, he just kind of gave me a look, but later said that he was very touched. I really do believe that he can do anything.

He never complained or questioned me all the times when I said that I would do something and then had to back out or delay whatever it was because my blood sugar took an unexpected dive. He did most of the driving. His patience and understanding are without limit.

During my transplant and the recovery period from it, he again did whatever I needed, but also shared my enthusiasm with the experience and awe of those that made it possible.

Since the transplant, he has put up with some of my crazy symptoms of the immunosuppressant drugs, and was even getting a little more worried than I would have liked. But he listened and understood when I sat him down to explain that it is all worth it and just part of the experience. He is happy with me and for me that the symptoms are gone.

I can't imagine going on this journey without his support. The bumps would be more painful and the joys, much less spectacular.

Group blogging- wildcard

2010-05-10T07:11:00.000-04:00

I'm trying something different this week. Karen of the Bitter-Sweet Diabetes blog came up with the idea to have all of the people who blog about their diabetes experience to write about the same topics this week. Every day is a different topic. It will be interesting to see what people have in common. I just checked and there are a lot of participants.

Today is designated to describe a day in the life of your diabetes. Karen also decided to include a wild card day to describe whatever you want. I am starting with my wildcard day today. I think I need it to provide a transition as to why I would still want to do this. So my topic for today is - Am I still a diabetic?

I have had this conversation twice recently with people who know me and my transplant experience well as to whether I am still a diabetic. They were both surprised, and curious when I said that I still am. I know that I say often that I feel cured, and I do, but I still have many of the same habits, both physically and emotionally. I still test my blood sugar about 6 times a day. I do this for the data for the islet cell transplant study and for my own knowledge as to how I am doing. Instead of taking insulin, I take handfuls of pills with my meals. And I still exercise every day.

Emotionally, I still worry over each blood sugar. The range of numbers that I see now (85 to 158 this week) is much different than before my transplant (40 to 400 on an average week) and that is why I feel cured. My new numbers don't elicit any symptoms at all. The worry is over what the future will hold, just as before the transplant. I can't bare to think, say, or write that my cells might not last forever, but I know that statistically, they might not. One of the reasons that I chose U. of Minn. as the site to have the transplant done is because they had the best statistics, but still there is no guarantee. That's just part of being in a clinical trial. Just like before, I do my best to stay healthy, but I know that its all up to my immune system as to how long my new islets will last. Other than taking my pills, there's not much that I can do. The book Flowers for Algernon haunts me, but I have certainly learned how to appreciate the present and a lot about what is really important.

Maybe even more importantly is that being diabetic for so many years is just too ingrained into my self concept and identity. You can't just take it off and walk away.

JDRF advocacy

2010-05-06T17:15:00.010-04:00

I had an interesting experience last week. I got an email from the JDRF advocacy group asking if I would go to my congressman's office to try to convince him to vote for the Special Diabetes Program that is coming up for renewal soon. The meetings are based on a Promise to Remember Me theme. When I agreed to do this, I thought I was joining a group who was already planning on attending and I would just show up and tell my story. It turned out that the group consisted of me and whoever we could find to join me. That proved to be difficult because it was on a Friday afternoon at 2:30. Most people that I called were either working or had other plans. I never realized before how few Type 1 diabetics I know. And those that I did know were all children of friends. Not a single person of my own generation. Luckily the JDRF people were able to find two other families to go with me. The group included a father and daughter, a mother with her diabetic daughter and a sister, and Gary and me.

The meeting went well. Congressman Latta listened to all of our stories and asked a few questions. The girls both had pumps and continuous monitors and could speak well about those. The mother had calculated how many insulin injections her daughter was spared from taking due to having the pump. I told about my transplant last. Judging by some of the questions he was asking I could tell that Rep. Latta did not know anything about the procedure. So I attempted to give him a reason to reconsider his previous "no" vote on this issue. I explained that my experience is living proof that the money is going to something that has been proven to be fruitful. It would be a shame if the research had to stop now. We are so close to the cure. I had been coached to ask if he would commit to cosponsoring the bill at the end of the meeting. But thankfully the dad beat me to it. Rep. Latta talked all around the issue without giving an answer, so the dad asked again. He still wouldn't commit, so we left without our answer. We did get to take some pictures as we left.

I was asked to follow up this week. I called his DC office and asked to speak to Rep. Latta's health care aide. I left a message on her voicemail, and am waiting to hear back.

I've had a few experiences with the JDRF now, and I am increasingly impressed by what I see. It is a well run institution by very knowledgeable and dedicated people. The main focus is on finding the cure for Type 1 diabetes. My transplant was partly funded by the JDRF. They are into most of the research that I have been watching lately. They just began funding for Living Cell Technologies in New Zealand, which is the group that is using encapsulated pig islet cells for transplantation. They are looking into stem cell transplants as well.

This tree radiates a sweet smell and the sounds of bees.

Results of my 21 month visit to Minneapolis

2010-04-29T07:42:00.000-04:00

I had a wonderful time on my visit to the transplant center in Minneapolis. It was nice to be there in good health this time. On my last visit, I was in the middle of the CMV infection. It made for a less complicated visit.

It was decided that I should stay on the Valcyte for a while longer to keep the CMV at bay.
My weight was 103.6 lbs. which is up from 101, but not by much. I was hoping for more. I'll have to keep working at it. I do think their scale is a little on the low side, but it is my point of reference.

I had the opportunity to get together with one of the transplant patient that I communicate with once in awhile. He is in the same protocol as me, so we have been through this experience together. He had to go through the drug transition too, but was able to tolerate the Cellcept. We had a very special time sharing our thoughts about all of this. We are both so pleased with our results and so grateful to the people who make it possible.

I also got to meet a woman who I had been communicating with on the facebook page. We happened to be having our appts the same day. She is on the waiting list now. They must have changed the protocol to include pre-transplant visits every 3 months.

The facebook page is really taking off.

The chemistry tests all were normal

For the CBC
WBC is 2.2 Absolute neutrophils is 1.7
Hemoglobin and hematocrit are back to norma levels. The vitamins with iron helped.

Prograf was 4.5 which is within range.
Rapamune was 7.2 which is within range.

A1c is 6.2 which is up from 5.4 on the 18 mos. visit. (Normal is 4-6.) I'm hoping that the increase is due to the stress of the CMV and the drug transition. I have noticed that my blood sugars have increased lately.

Before breakfast: blood sugar is 93 C-peptide is ?

After breakfast (90 min.) blood sugar is 159 C-peptide is 3.0

The first picture was taken on my walk along the Mississippi. I got rained on and had to run most of the way back and up a long flight of steps that offers a shortcut back to the hospital. The second is from my garden.

Islet Cell Transplant Recipients is a new page on Facebook

2010-04-02T08:13:00.005-04:00

I recently found another islet cell recipient online and he has created a facebook page where we can all share our experiences with this. It was such a good idea! Its so hard for us to find each other because of the constraints of HIPAA. I appreciate the few recipients that I have been able to locate. Its so nice to be able to share our joy of the experience in general and to compare some of our symptoms of the side effects of the medications we are all on. I hope that it really takes off.

I am completely done with the immunosuppressive drug Cellcept. I just had my levels for Rapamune and Prograf checked and both were within range. Maybe I can be on coast for awhile with these drugs.

My mouth sores (caused by the Rapamune) are gone now and I haven't got any new ones. They were no fun.

Cassie is in California now. After a few going away parties and agonizing over which clothes to take, she is safely there. We already miss her a lot. She and Gary are hoping to get together soon. That part, I like.

I have watched a few people who were hoping to get islet cell transplants have their hopes dashed. The most recent one was due to a high PRA which is a test of the amount of antibodies you have in general. The higher the PRA, the more likely you would be to reject the transplant. Its something you have no control over, which makes it seem even more unfair. My heart goes out to these people. The only silver lining might be that with all of the advances that are occurring now in diabetes research, these people might get a newer treatment that does not require drugs or might have other benefits compared to the current technology. I wish them the best.

Its Easter weekend, the weather is great, and I am off. Gary and I are planning a scenic walk this afternoon.

The pictures are of some spring flowers, my pig at work that was decorated for Easter by my creative coworker and myself, and the last one is of pig islet cells from the Living Cell Technologies site.

Drug transition update

2010-03-11T15:38:00.003-05:00

I am slowly decreasing my dosage of Cellcept. I am down to less than half of what I had been taking. I am up to full strength now of the Rapamune. I feel better already. I still get tired sometimes after my walk, but not without a reason anymore. I no longer wake up and already feel tired. My stomach is getting better too. I still have a way to go with that, and I still don't have much of an appetite, but I am trying really hard to push myself to eat.
My blood sugars continue to be good.

That was a few days ago. I have decreased my Cellcept even more and am even better. I have been testing my endurance lately, and can go a lot farther than a few weeks ago. It's just wonderful.

The bad news is that now I have the downside of Rapamune, which is mouth sores. They are not nearly as bad as the stomach and fatigue issues of Cellcept, but are still no fun. I had a few of them when I was on Rapamune the first time, but not this many. I have 3 bad ones right now. As much as I hated to complain already, I asked Janet what I should do about them. She suggested a medication called Debactoral and Dr. Bellin agreed. I had a dentist appt this morning and he is going to get some samples in for me to try out. In the meantime, he prescribed an oral lidocaine rinse, which helps some.

These are just some fun pictures. The first is a day's worth of pills.

The second is the first flowers of the year.

The last one was taken at work. One of my very creative coworkers decorated my pig for St. Patrick's Day.

Back to Rapamune

2010-02-20T16:34:00.001-05:00

The decision has been made to switch me from Cellcept to Rapamune. This is one of the immunosuppressive drugs that I was on before, right after the transplant. I had very good luck with it before and should this time too.

I started taking the Rapamune yesterday morning. I have felt pretty tired the last few days, but that could be partly due to the CMV. My titer is back to normal now, but I remember from my first experience with it that the fatigue lasts for awhile. I also remember being tired right after the transplant. That could have been caused by any of the several drugs I was taking at that stage, but maybe the Rapamune was a part of it. Time will tell.

The transition will start with my taking 5mg of Rapamune in the morning. I will decrease the Cellcept after 4 days and then have my levels drawn to decide how to proceed. The last transition from Raptiva/Rapamune to Cellcept/Prograf went smoothly, so I expect this will too. It is almost a year ago now.

This is the newest member of the household. Her name is Callie and she arrived with my daughter Becky. She is almost housebroken now and has become the companion of our dog Lucky. She has won us all over now and not entirely because of her extraordinary cuteness. She and Lucky have been taking good care of me during this stage of the process.

CMV update

2010-02-18T08:17:00.002-05:00

It has been an interesting few weeks. I have been waiting to write about it until some kind of logical break in the action, but that might be awhile.

I had the lovely colonoscopy which wasn't really all that bad a week ago friday. It was to determine if I had CMV colitis. The initial finding was that I do have colitis. The tissue was sent to Mayo Clinic to do the testing for CMV. I really thought it would be positive. It seemed logical that if I have CMV and colitis that they would be linked. It was decided that they are not. The cause of the colitis is one of my immunosuppressants, the Cellcept.

So, now the question is whether to change to a new immunosuppressant or to reduce the Cellcept dosage. The decision is being discussed now by Dr. Bellin and Dr. Hering. That would be an interesting discussion. From my perspective, it would be nice to have my stomach back to normal, but my glucose numbers are so good right now. I hate to risk that the islet cells wouldn't be as compatible with the new drug. But, I am sure that there are numerous other variables that I am not aware of. I feel comfortable with whatever these two doctors decide is best for me and the islets.

As for the CMV, it is still lurking, but getting better. I don't feel as tired anymore. If I have a busy day, I get very tired, but if I take it easy, I'm OK. I had my CMV level drawn on Monday and am awaiting the results. I saw the infection control doctor on Tuesday. He was not surprised that it was the Cellcept, not CMV, causing the colitis. He is not convinced that the CMV is causing any problems with me at all. I'm not sure. I guess either or both the Cellcept and the CMV could cause the tiredness and weight loss.

This is all complicated but so interesting. In a strange way, I find that I can be very objective about all of these bumps in the road. I think its a matter of trusting my caretakers, finding it all so scientifically interesting, and enjoying the relief of not being in the drivers seat of my treatment. It is all part of being in a clinical trial. It is not like a trip to the doctor. There are the obvious risks, but the benefits are very rewarding.

Some of the best benefits are the people I come in contact with. Check out my blog list. Also the Northwest Ohio JDRF newsletter came out this week with the 2nd part of my story. Very exciting.

Results of 18 month visit to Minneapolis

2010-02-05T21:35:00.000-05:00

Here are the lab results from my 18 month visit to Minneapolis. They look good.

Cholesterol is 167
HDL is 83, which is higher than the last time.

The chemistry tests all are normal, except total protein which is 6.6. (normal is 6.8-8.8)

For the CBC
WBC is 2.8 Absolute neutrophils is 2.1
Hemoglobin and hematocrit a little low.
I didn't realize that the vitamins I was taking had no extra iron. I bought new ones. That should help get these back to normal.

Prograf was 3.4 which was low. I increased my dose from 4 to 5 pills twice a day.
Cellcept was 1.45 which is a little low, but not increased until the CMV business is resolved.

A1c is 5.4 which is excellent. (Normal is 4-6.)

Before breakfast: blood sugar is 91 C-peptide is 1.01

After breakfast (90 min.) blood sugar is 168 C-peptide is 6.65

The JDRF e-newsletter with my story came out a few weeks ago. It was pretty exciting to see. Part 2 that contains the story since I had the transplant comes out later this month.

The CMV situation is ongoing. I am still waiting for more results.
I developed a cold and sore throat last week, but it seems better now. I had a CBC and EBV test to try to see what was causing this. My white count was a little higher, but no EBV. I am still getting tired off and on, but assume that is still the CMV.

Here are some pictures I took on my traditional walk along the Mississippi River. It was cold, but very enjoyable.

CMV is back

2010-01-21T10:16:00.000-05:00

My CMV (cytomegalovirus) is back. A few weeks ago, I noticed that I was feeling a little tired. I just couldn't get motivated to do things. My blood sugars had been elevated about 15 units on average. My diarrhea was a little worse. I was beginning to wonder about the CMV. Luckily, I was due to have it checked soon. Ironically, I began to feel a little better and my blood sugars decreased back to normal. I decided I was wrong about having CMV. Then on Thursday evening, my infection control doctor called to say that my CMV titer was quite high. It's amazing how having a doctor tell you that you are sick can make you really feel sick. The next day, I felt very tired. Was it the power of suggestion, or was I in denial before? Who knows?

The infection control doctor was expressing concern about me being on an antiviral again for a long term, but said he would discuss this with Dr. Bellin. In the end, they decided to put me back on the Valcyte. This is the antiviral that I was on immediately following the transplant and again for two months with the first CMV infection. I have been taking it for 5 days now, and the tiredness seems to be gone. My blood sugars are still good. I never developed a fever. Hopefully, we caught it on the downswing. I might just have to contend with this for the long term. It is not that I am catching it from someone, it is just a latent infection that my immune system would normally keep at bay. But, being immunosuppressed allows the infection to gain control at times. I feel comfortable with the decision to treat this with the antiviral. I would not want to feel that tired all of the time.

Dr. Bellin was concerned that I might have CMV colitis because of my worsening diarrhea, so I have to have a colonoscopy to rule it out. Lucky me.

I just returned from my 18 month visit to Minneapolis. The timing was good in that I could discuss the CMV and the strategy for dealing with it with them. The trip was enjoyable as always, and I feel very reassured and that I am in very good hands. I will post the lab results when they are all available. I actually had good luck with all of my flights.

2009 A Look Back

2010-01-01T15:09:00.000-05:00

Its a new year, and decade, and a good time to take a look back at the highlight of this adventure.

From January to March, not much, and that was a good thing. Everything was as running perfectly smooth.

In March, I switched my immunosuppressant regimen from Raptiva/Rapamune to Cellcept/Prograf. That caused a few variables to fluctuate. I had a difficult time adjusting to the new drugs. My stomach was in almost constant distress. I learned to take fiber pills and to rely on immodium. I still do.

In July, I developed a fever and fatigue which was later diagnosed to be CMV. I began taking an antiviral and it gradually got better. It is gone now and hopefully for good. At the same time, my opthamologist discovered a cotton-wool spot on one of my retinas. After a few visits to a retina specialist, that too is gone and hopefully for good.

During all of this, my blood sugars were rising. Not badly, but enough to worry me. My one year visit to Minneapolis was in July. Dr. Hering assured me that they would come back to normal. They did. It was a good lesson to learn of patience.

In November, I had my first cold. Thank you son, Gary. But it was never severe, no fever, and didn't last long. It also was a good lesson in patience. It is a relief to know that I can fight that kind of thing off on my own.

As for now, I still have my stomach issues. They come and go, but are always with me. At first, I gave up coffee, but just recently with the cold weather, I have been trying to drink it again. I am finding that half and half helps to mellow its effect on my stomach. Unfortunately, now I can't drink pop. I always had a pop with lunch and really enjoyed it. But now, after just a few sips, my stomach feels very irritated. I fought it for awhile, but have given up for now. Maybe when the weather gets warm I will try it again.

My drug levels of my immunosuppressants continue to fluctuate. It is probably partly because I take them with meals instead of on an empty stomach, but I feel so much better this way. My blood sugars are still a little higher than they have been at their best, but not enough to worry about. I have learned some patience. See above.

One of the things that I have accomplished this year is to find and keep in contact with other islet cell recipients or people who are interested in the subject. These people are so valuable when it comes to comparing experiences and sharing information. Because of the influence of some of these people, I have contacted the JDRF to see if I can help. Later this month, the JDRF newsletter is going to have a story about my experience that I will be writing soon. I hope that it will just be the beginning.

I continue to be grateful for this opportunity and it is such a lesson in how important it is to enjoy the value of each day.

Thanks to all my family and friends for your continuing interest and support. Have a wonderful 2010.

Endocrinologist appt.

2009-12-17T08:31:00.001-05:00

I have a new endocrinologist. The one that I had been seeing for 25 years has retired. I really like my new doctor. He is very excited about my transplant which of course, is very exciting for me. He actually participated in some of the early research on islet cells when he was in medical school.

He had some interesting things to say at this visit and I want to write them here and will probably be referring back to see what I was thinking at this point in time.

He is worried about my fasting blood sugars being higher than at the last visit. Three months ago, they were mostly below 100. Now they are between 110 and 115. This correlates with an increase in my A1c which was 5.3 and is now 5.6. I have been somewhat worried about this too, but am hoping that it is due to other factors like my cold and the season. I always am at my best in the summer. I think it is the added activity that the summer facilitates. Only time will tell what is happening. I have worried about this before, only to see a return to normal.

He asked if it would be possible to begin insulin or oral glucose lowering medicines early in hopes of keeping the islet cells stronger for longer. This is something that I will ask about at my next appointment in Minneapolis next month.

He commented that he is glad he received me as a patient after I had already had the transplant, so that he does not have to deal with the possible guilt if this does not go well. I can understand this. (My former endocrinologist was not all for my doing this, and it was a bit uncomfortable for both of us that I did it anyway.) When he said this, I said that no matter how this ends, I will never doubt my decision to have tried this option. He smiled and wrote what I said in his notes. I asked if this was to read back to me later? He said no, he just likes to write that kind of thing down. I gave him permission to throw it in my face if needed. I know that the decline will be difficult.

He was just a little concerned about my weight. I was exactly the same as my previous appt. at 105 lbs. He ordered some thyroid function tests which have come back normal.

My Cellcept level is back up. I have been tolerating the increase, but would not mind going back to the previous dose. I am due to have a recheck next week for both drug levels.

Day 500 post islet cell transplant

2009-12-03T16:39:00.000-05:00

500 days now and I remember well wishing for just 2 hours (in a row) of stable blood sugars. I have a lot to be thankful for.

Things are mostly stable at this point. I just had my monthly labs done and there were just a few minor issues.

My Cellcept level was low, so I have increased my morning dose. Hopefully, my stomach won't suffer too much for it. Ironically, we are planning a weekend getaway to Florida with some friends so I am hoping I will not be having my old stomach problems. The last time my level was increased was just before we left for St. Thomas, so I have a right to be paranoid.

My blood sugars have been creeping up a bit, but it is probably due to the cold I had along with a few other minor issues. My glucose meter average is about 115 now. When I asked about it, I was told not to worry, that just happens. I probably fluctuated with minor stresses before the transplant, but the numbers were so inconsistent that it was hard to detect. Now I can tell by looking at my logs when I have had a headache.

Due to the inspiration of Donna, the author of the book One Step Up From A Lab Rat, I have decided to start volunteering some time to the local chapter of the JDRF. I called them a few weeks ago, and am waiting to hear how I might be able to help. In the process, I joined Juvination, which is an online community connected with the JDRF, and I have met some interesting people.

Results of my 15 month checkup in Minneapolis

2009-11-18T08:50:00.001-05:00

These are pictures I took on my phone while I was on my customary walk along the Mississippi River after my checkup. For October, the weather was nice.

The results are back from my visit and look good.

The CBC was typical. WBC was 2.5, Hemoglobin was 11.4 which is a little low.
Blood chemistry tests were normal with the albumin at 3.6 and total protein at 6.5, both of which are just a bit low.

My A1c which is the 3 month overall average measure of blood sugar was 5.6 Normal is 4-6.

Fasting glucose was 97 and C-peptide was 1.23

Post-prandial (90 min. after meal) glucose was 171 and C-peptide was 4.96

The only thing that worried me was that despite my best efforts, I have lost another pound. I discussed this with Dr. Bellin. She didn't seem worried and we wondered if maybe this is just my new weight. I knew it was typical to lose some weight right after the transplant, but I didn't expect to keep losing. I know that I lost some during the CMV experience, but I expected to gain that back. I guess I will just stop worrying about it and just buy some new clothes. I am also planning on polling the other islet cell patients that I communicate with and see how their weight is behaving.

In the last week, I have visited my retina specialist and been told that my cotton-wool spot is gone, and had my CMV titer measured and it was negative, So that experience seems to be behind me now. I will continue to have my CMV measured every 2 months for awhile, just to be sure.

First Post-transplant cold

2009-11-06T09:29:00.002-05:00

It turns out that I did not have to worry about all of those diseased people on the airplanes or of not having my H1N1 vaccine in time after all. I got a cold from the very person who I was risking the flights to go see. I got a cold from my beloved son. When we first got there, he was sneezing and tired. Before we left, Heather was sneezing. A few days after we got home, both Gary and I began sneezing. I would say that is reliable enough data to point out the source. It was actually very interesting to be able to have such a direct comparison between Gary and my immune systems. His symptoms hit about one day before mine and peaked earlier. Mine dragged on for about 2-3 days past his. So all in all, I was pleased with my own immune response. It was just a little worse than Gary's, in time and the same in severity of the illness. I was worried that I might run a fever and then have to worry about H1N1, but that never happened and I avoided anything with a fever suppressor that might mask the presence of one.

I went to work, but babied myself as much as possible. It is almost like being pregnant, worrying about taking care of the islet cells. I would hate to lose them because of an illness.

My blood sugars shifted upward during the cold, but are coming back down now.

I was able to get my H1N1 shot yesterday, so I am all set with that.

My coworkers and I were the H1N1 virus for our halloween. We work in the microbiology Department. We won for best group costumes. I can't believe that I finally got them to dress as pigs!

Santa Barbara

2009-10-26T14:19:00.006-04:00

We just returned from a fantastic trip to Santa Barbara, CA where we visited our son, Gary. It was one of those trips where everything just goes right. The weather was perfect. The scenery was amazing. We can see why he likes it so much there. We enjoyed mostly outdoor activities. We biked along the Pacific, hiked in the mountains, toured the Botanical Gardens, and found some historical sites. Gary took us to see one of the telescopes that his company owns and which he helps to maintain the network. It was way in the mountains in a national forest and the drive there and back was spectacular. We ate most of our meals at open air restaurants and just had a wonderful time with Gary and Heather. And of course we got to see his dog Maddux, the genius.

It was so nice not to have to worry about how the time change, especially with all of our added vigorous activities would affect my blood sugars and general state of well being. I rarely even thought about it other than to notice that it was not an issue. In previous visits across three time zones, it was always a problem, no matter how much. I anticipated and prepared for it. My stomach was on its best behavior for this trip too.

Now I am getting ready to leave for my one year and three month visit to Minneapolis. I am really looking forward to it. I leave tomorrow afternoon. It has been a crazy week of flying, but so much fun. I still have not managed to get my H1N1 vaccine and it makes me nervous to fly with so many people.

I have my mask that I can wear if I get near to someone who looks sick, but so far I haven't felt that I needed it.

New book by Edmonton Protocol patient

2009-10-20T19:56:00.000-04:00

I have had the good fortune of finding one of the original Edmonton Protocol islet cell recipients. There was a story about her in Diabetes Health, one of the online diabetes information magazines that I read. She has written and published a book about her experience. I purchased the online version last night and have read some and scanned most of it. It is really good. I am really enjoying the parallels between our two experiences.

The author is Donna Marcelissen. The book is titled One Step Up From a Lab Rat, and can be found here. I e-mailed her and she answered some of my questions and hopefully we have started a correspondence. Her experience has been much more intense than mine on several levels. Her diabetes and its complications were much more advanced than mine. Her time and financial requirements were more than mine. And most importantly, she didn't have people who had already experienced this before her that she could talk to or even read about. I still have only found a few, but that is still a big difference than none at all. I really went into this with very few reservations. She is a true pioneer and there will be so many of us who will owe her a great debt.

Gary and I are planning on visiting our son, Gary in California this weekend. I am really looking forward to it. I have been feeling good lately, and hope my stomach will behave.

Pig islet cells transplanted in man in New Zealand

2009-10-09T19:34:00.004-04:00

I found this article yesterday. This is the first pig islet cell transplant in awhile. I hope that I can find a way to follow the progress of the patients.

Wednesday, 7 October, 2009 - 17:31

Wellington, Oct 7 NZPA - A New Zealand biotech company has implanted cells from a pig pancreas into a long-term diabetes patient at Middlemore Hospital in South Auckland.

The pig cells were expected to help the man, 47, manufacture his own insulin to combat type-1 diabetes.

They were inserted in his abdomen after Living Cell Technologies (LCT) received special approval for the xenotransplant.

The patient, who has suffered from diabetes for 20 years, was the first of eight approved for clinical trials of the LCT product.

The pig cells are covered with a seaweed gel to avoid them triggering the immune system in humans and being rejected.

The first four patients in the trial are being given the equivalent of 10,000 islet cells per kg of body weight and the next four patients will get a higher dose of 15,000 cells/kg.

It is not the first such transplant in Auckland -- LCT's medical director, Professor Bob Elliott, who carried out the original research, implanted pig cells into people there in 1996 and 1997.

His work was interrupted by Government concerns over the potential for pig viruses to be spread between humans.

NZ medical authorities blocked the trials being re-started in Rarotonga, and LCT was later listed on the Australian stock exchange to fund trials on monkeys in Singapore.

LCT has said it could avoid risk by using tissues from disease-free piglets in a breeding line said to have been isolated from other pigs for over 150 years on the Auckland Islands.

According to Dr Elliott, a group of Russians injected with New Zealand pig cells in 2007 showed reductions in daily insulin injections, ranging from 23 percent to 100 percent, and had good control of blood glucose levels in four out of five patients.

The Auckland trial received ministerial approval in June on the condition that it was limited to patients with "brittle diabetes", a relatively rare type-1 form of the disease which can cause extreme swings in blood sugar levels.

This week's patient has had frequent episodes of high blood glucose and unacceptable swings, including low blood glucose levels.

He was monitored for eight weeks by principal investigator, Dr John Baker, a diabetes specialist based at Middlemore Hospital, before the implant, and will be followed up intensively for a year.

An independent data safety and monitoring board will assess progress and provide a report in six months.

LCT chief executive Paul Tan said he believed the Auckland trial might deliver better results than the Moscow trial, because it would be using higher doses of islet cells.

Very exciting. This is what the Spring Point Project and Dr. Hering are working toward in Minneapolis. Information on this is on the pig picture at the side. The New Zealand study also included the gel surrounding the islets so that immunosuppressants are not needed.

I am continuing to do well. My blood sugars are running fine. My drug levels are stable. My stomach is not perfect, but tolerable. I'm still working on gaining some weight back.