Friday, December 24, 2010

Merry Christmas 2010

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.

Thursday, December 16, 2010

Islet update

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.

Wednesday, December 8, 2010

The naked dream of diabetics?

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.

Thursday, November 25, 2010

Diabetes Transplant Summit - Part 3

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.

Thursday, November 18, 2010

Diabetes Transplant Summit experience Part 2

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.

Friday, November 12, 2010

Diabetes Transplant Summit experience - Part 1

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!

Tuesday, November 9, 2010

D-Blog Day and my 6 thoughts about diabetes

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.

Thursday, October 28, 2010

Islets and Insuln

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.  

Wednesday, October 13, 2010

Each Islet is Precious

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.

Sunday, October 3, 2010

Islet Cell Transplant - Chapter 2

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.

Sunday, September 26, 2010

JDRF walk - number one

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.

Saturday, September 18, 2010

Diabetes Transplant Summit at Diabetes Research and Wellness Foundation

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.

Thursday, September 9, 2010

Eggs,bikes,and Tylenol PM

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.  

Sunday, August 29, 2010

Thinking back

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.

Sunday, August 8, 2010

Transplant update

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.

Friday, July 30, 2010

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

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.

Thursday, July 15, 2010

Quite a week

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.

Saturday, July 10, 2010

Transplant update - feeling better

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.

Saturday, July 3, 2010

Transplant update

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.

Wednesday, June 23, 2010

Steps toward the cure

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.