My Story in A Sweet Life

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!

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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.