Endocrinologist appt.

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

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

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

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

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

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

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

Day 500 post islet cell transplant

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

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

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

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

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

Results of my 15 month checkup in Minneapolis

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

The results are back from my visit and look good.

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


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


Fasting glucose was 97  and C-peptide was 1.23


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

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

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

First Post-transplant cold

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

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

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

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

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

Santa Barbara

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

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

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

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

New book by Edmonton Protocol patient

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

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

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

Pig islet cells transplanted in man in New Zealand

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

Wednesday, 7 October, 2009 - 17:31

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Celebrating One Year of no insulin

I just celebrated a year of not having to use insulin on Saturday, Sept. 19, and decided to share my joy with everyone. I sent this letter to anyone whose e-mail address I have and am working on getting the addresses of many others that I don't.

Gary and I actually spent the day camping with some of the people that I spent my first insulin free day with at Put-in-Bay last summer. Except for our mouse eaten camper and the skunk that sprayed our dog, it was a perfect weekend.

Dear Family and Friends,

Yesterday was my one year anniversary of being insulin free and I am feeling nostalgic about it and thought I would send a letter to share my good feelings.

It has been a fantastic year highlighted with so many new experiences.

I never thought I would be able to go on a walk or a bike ride and not take something sweet to eat with me. I do that now without even thinking about it.

I can go to a restaurant with friends and not have to eat before or worry if there is a long wait for the meal.

I can take a break at work when I reach a convenient stopping place instead of whenever my body needs to be refueled.

I can get through an entire night without having to check my blood sugar and/or eat several times.

These were the first things that crossed my mind, but I think I will change course and list all of the reasons that I am in such a good place right now:

The staff at the Schulze Diabetes Institute who work so hard to enable the reality of the clinical trial that I am participating in: Dr. Hering, who is the force behind the program and the reason that I chose U. of Minnesota as the best to have the transplant. Dr. Bellin, who monitors my progress and I have learned that I can trust her opinions completely. Janet who is my main contact person and does so with a very comfortable balance of compassion and professionalism.

My family, both immediate and extended, have been so supportive and excited throughout this amazing journey. My mom actually drove through a blizzard with me to get to my initial screening tests.

My friends who are so happy for me and understand my excitement and don’t (seem to) get tired of hearing me talk about it.

My coworkers who sometimes had to finish my work for me when I had to stop what I was doing because of a low blood sugar, but expressed only concern for me.

Anyone who is an organ donor.

And last and most, my husband Gary for being there completely. I could not have done this without his support. It helps so much that he thinks this is as cool as I do.

One very enjoyable aspect of this experience has been the sharing of it. I have been keeping a blog journal of my experience and have made some contacts with others who are considering the idea of a transplant and some who have had the transplant before me. It is such and important and wonderful thing that I feel so fortunate to be a part of. I thank all of you for allowing me to share it with you and I hope that you will share it with anyone who will listen. Hopefully, this study and the many that are being performed around the globe will soon lead to a cure.

Sincerely,

Kathy

Update and diet issues

I seem to be at a plateau in many variables at the moment.

My average blood sugar according to my meter is 105.

My stomach is ok.  Not the best or the worst.  I am taking one immodium a day.  I am trying to cut back on that when I can because I am suspecting it is the cause of my evening upset stomach.  

My drug levels are stable.  I can start having them tested monthly instead of twice a month.

My energy level seems good.  I have been playing some golf and have been pleasantly surprised with my game (except for chipping).  Yesterday, Gary and I took a long bike ride and I wasn't any more tired than I should be.

The next variable I have to work on is to gain some weight.  I  am about 12 pounds less than pre-transplant.  I  lost about 8-10 with the transplant and about 5 from the CMV/diarrhea.  I gained some of it back over the winter, but am still too low.  My gauge for deciding that I   must be too low is that people keep telling me how thin I look and not in a good way.  I just assumed that  I would gain it back with time, but it looks like it is going  to take some effort.  It is very strange to be adding food to my diet after so many years of trying to eat smaller amounts to keep my blood sugar down.  But I have been trying to increase portions and add an item here and there.  I really have not changed from my pre-transplant diet at  all. I had assumed that I would gain weight on this diet because I am no longer excreting sugar(and calories) in my urine.  I have to admit it is a weird problem to have and I don't get much sympathy for it.  I also have to wonder if it is possible to gain weight at my age and gender and have it not be all fat.  I get  some exercise every day, mostly walking, but I am not into weight training at all.

More Results from One Year Checkup

 Results of Glucose and Insulin Tolerance Testing from one year check-up

This chart is the results of some of the testing that was performed at my one year check up.  If you click on it, it expands and is easier to read.  For this test, I was hooked up to one IV for drawing my blood at all of these intervals, and another IV to deliver the glucose and insulin boluses.  This shows how the C-peptide rises when the glucose rises and returns to baseline.  It also shows how the insulin level rises with the glucose and also returns to normal.  This chart looks a lot like the chart from my 75 day visit.  The C-peptides for this test were a little higher.  At 75 days, the highest was 2.1.

Gary is back from his trip to Scotland.  His mom has always wanted to go to Scotland and see where her family had lived, so she and Gary and some friends went this summer.  They had a wonderful time.  I hardly slept while he was away.  I am still trying to decide whether it was due to his absence or the Valcyte.

C-peptide results updated and results from 1 year visit

This is a chart imported from an earlier blog and used for comparison here. There is not a big difference between the 120 day visit and the more recent results. I would assume that is a good thing.

C-peptide values- recent

---------Pre-breakfast-- Post-breakfast

Day 180---1.17---------------3.92

Day 270 ---------------------5.29

Day 356---1.27--------------5.64

The C-peptide is a measure of how well the islet cells are working. At day 0 which would have been pre-transplant, I was at 0. Now I have readings that show that the islets are working both before a meal and at a higher level after a meal.

Other interesting labs from my one year visit include:

Cholesterol of 132 which is good but.... HDL of 49 which is not good and explains why the total is lower now.

A1C of 5.7 which is good. Previous was 5.6. Increase probably due to CMV.

CBC about the same as previous. WBC is 3.7

Liver enzymes slightly increased which is the same and normal.

EBV and CMV both negative.

A battery of tests were performed to test kidney function. They all are normal.

My glucose meter that I do my daily checks of my blood sugars has a feature that does 7,14, and 30 day averages. My current 7 day average is 95. My average at the peak of my CMV troubles was about 125. It is so nice to be back to normal.

Feeling better

Things have changed immensely since my last post. My list of complaints is about empty now.

The cotton wool spot in my eye was looked at by a retina specialist and it was determined that it was not due to the CMV. It is there because "I am no longer a teenager". It will have to be followed, but no need for immediate concern.

The CMV is about out of my system. I still get a little more tired than I should, but not often anymore. The infection control doctor said that I should be back to normal in about 2 weeks. He said this 2 weeks ago and I think he was right. I will be on medication for this for awhile and it will be followed for a long time. But for now, no worry.

The diarrhea is almost gone. I still take one immodium most days and that seems to keep it in check. I don't miss that at all. Taking my immunosuppressent meds with my meals is what caused it to become better. My last drug level test was within range, so hopefully I can continue doing this.

My blood sugars are almost back to where they were before the CMV. I was afraid to even hope for this at my worst point, so I am extremely pleased and relieved to see this. Dr. Hering said that he thought it would happen like this. I am glad to be wrong. I think the recovery of my blood sugars is paralleling the recovery from the CMV.

I am still waiting for the results of all my labwork from my one year visit to Minneapolis. My A1C was 5.7 which is 0.1 higher than at my 9 mos. visit, but the increase was due to the CMV I would assume. And it is still excellent.

The only bad thing to report is that all of my summer vacations are over. The last one was to Daytona Beach, FLA. My entire family was there, except for Cassie. Even Gary and Heather flew in from California. It was a great week and a perfect place to recoup. My only complaint was that my shins hurt from too much beach walking. Here are a few pics. At one point, we had 31 people present, and had about that the whole time. The weather was good and the games were fun.

7/21/09 One year post islet cell transplant

I had my one year check up in Minneapolis on Thursday and Friday of last week.  It was quite an event.  We left Wednesday morning and drove all the way to Minneapolis.  12 hours, which is long, but easy.  We ate supper when we got there and then checked in to the hotel.  I suddenly felt cold and tired so I took my temp. and it was 99.8.  We spent the evening just resting and watching TV.

The first day of the checkup was a lot of blood work.  They tested drug levels, liver and kidney function tests and cholesterol as well as glucose and C-peptide.  It lasted until about 3:00.  

As a thank-you to the staff who had done so much for me, I had some T-shirts made that showed a path of islet cells with a person walking on it.  "The Cure" was at the end of the path and the Schulze Diabetes Institute was at the top.  One of the islet cells had a pig face inside it to represent the research on pig islet cells.  It was a hit and we really enjoyed giving them out.  It made the visit even more fun.

The second day was a glucose tolerance test where glucose, insulin, and C-peptide were measured at intervals after I was given a bolus of glucose and later one of insulin.  I am anxious to see the results of all of these tests.

That afternoon we went to the Art Museum and then to our friends house.  We went out to dinner with them and spent that night at their house.  Mike was transferred to Atlanta, so this will probably be our last visit with them here.

Then on Saturday, we went to a fundraiser for the SDI called the Lightning Run.  It consists of hundreds of motorcycles riding in a parade through St. Paul.  Gary and I got to attend as VIPs.  We didn't ride motorcycles, but we did get to meet some of the doctors and staff and had a great time.  They had me say a few words about how the transplant has changed my life.  I really enjoyed doing that.  I think it is so important for people to learn about my experience and how successful this research already is.

I enjoyed meeting Dr. Sutherland.  He is in the picture with Dr. Hering.  He is  going to connect me with some of his patients who have had their own islet cells transplanted into their liver due to having pancreatitis.  They also have websites that are focused on their experiences.

I have CMV

My blood tests came back negative for EBV, so the Dr. decided to test for CMV. It turns out that that is what my problem has been. CMV is cytomegalavirus and most people have been exposed to it, but it only causes problems in infants and immunosuppressed patients. Its symptoms are like mono with the low grade fever and fatigue. It was both a shock and a relief to learn. It is pretty rare, but can cause some problems. I had to be seen by an infection control doctor. I am now taking valcyte which is an antiviral medication. The doctor said that it should not take long to feel better if this is what is causing my fever. He wasn't completely sure about this. When I told him that I had just taken a vacation snorkeling in the Virgin Islands, he said that he would be looking into this to see if he could find any other likely disease I might have contracted. I am rooting for the CMV.

In between the negative EBV and the positive CMV tests, I went to see my general doctor. She ordered a few tests that came back negative. I also just saw my opthamologist today. He found and irregularity on my retina called a coton wool spot. When I told him about the CMV, he said it makes sense and that now I should see a retina specialist. He said that the antiviral should clear it up, but that it should be followed up.

Things can sure get complicated. I really think I will be better soon. I have been on the medicine for 4 days now, and I can feel my energy coming back and the fever is getting better.

Gary and I leave in the morning for Minneapolis for my one year check up. I have been looking forward to it for a long time. It is too bad all of this other stuff is happening now, but I am planning on addressing each issue with Dr Hering and then putting it all aside and celebrating that I have reached my one year anniversary as an insulin free diabetic. One year ago, I never would have dared hope for such a thing.

Dealing with a fever

On my last post, I was  eagerly awaiting a call to learn the results of my Cellcept level.  That came on Wed. and I did get to decrease just a little which is always a good thing.  We also had a discussion about my diarrhea and decided to try immodium every day in addition to the fiber pills.  That has helped somewhat.  I am at least approaching a tolerable level.

But later that day, I was lucky enough to get to go on a boat ride.  It was fun, but chilly.  When I got home, I just could not get warm.  The next day I was really tired.  By evening, I decided that maybe I was maybe more than just tired and took my temperature.  Sure enough 99.8.  Hot high, but not normal.  I called my Minn. contact and was told to just keep an eye on it and call the Dr. if it got over 100.  Of course, it was the holiday weekend and I had to work most of it.  I have been running a low grade fever ever since, never high and sometimes normal, but something is not right. It feels like the more I try to do, the more the fever exerts itself.   My blood sugars are running higher than normal too, which worries me.  

I had my blood drawn on Monday, and am eagerly awaiting the results.  They did a CBC and Epstein-Barr test. My symptoms feel like mono, except no swollen glands.  

I know that this is just sidetrack on this journey that I am on (and truly enjoy), but I am anxious to feel better.  It is my beloved month of July!

Our vacation to St. Thomas

Here are some pictures from our vacation to St. Thomas in the Virgin Islands.

We had a wonderful time doing some of the things that we enjoy the most.  The snorkeling was excellent, we saw every color imaginable for both plant and animal.  We actually had good weather which is different for  us.  We ate a lot of sea food and walked a lot of beaches.  The water was warm and green.  We took a ferry over to one of the British Virgin Islands, Jost Van Dyke, which was just beautiful.  Only 150 people inhabit the  island.  All of the islands

are very mountainous which makes them picturesque, but difficult driving, especially on the left.

I  did enjoy not having to deal with my pump or blood sugars.  The downside was that just before we left, I had my drug levels measured and they were low.  So I had to increase my Cellcept   dose which was havoc to my stomach. The beaches all had to  have a

prerequisite of good bathrooms.  It did not ruin our trip by any means, but was a factor.  

There is a chance that I might be changed to another form of the Cellcept.  The  doctors are concerned as to why my levels fluctuate so much.  I had my blood drawn a few days ago and am eagerly awaiting the results of that test to see if I  can go  back to a lower dose.

One bit of good news  on the drug front is that my insurance is going to cover it  well.  I will  end up paying about $40 for a three

month supply that would cost about $3300.  That was a relief to find out.  My year is up on the 21st and at that time I will be responsible for all of my medication.  Up to now the study has paid for all  of it.

fiber pill experiment

I have finished my fiber pill experiment. The results are that the psylium based pills help and the inulin based pills do not. I did not even finish the three days of the inulin pills. The three days with no pills felt somewhere in between. I would like to say that the psylium pills brought me back to feeling normal, but that is not the case. I have some good days and some not so good days. I think the immunosuppressants are just too powerful to completely overcome.

Gary and I are heading to St. Thomas in the Virgin Islands soon. We have been really looking forward to the trip. We missed our vacation last year when I had the transplant. It will be so nice to enjoy a beach vacation such as this with no insulin pump to contend with.

State Champs

Gary's track team became the Division 2 State champs on Saturday.  It was very exciting right to the end.  The team overcame disappointing injuries of both his fastest sprinter and fastest distance runner to make things even more interesting.  He is very lucky to have an athletically gifted and dedicated team and a talented and enthusiastic staff to make this goal a reality.  I know that his dad was watching intently.

The girls and I went to Columbus to watch and had a great day seeing Gary in action (and soaking up some sunshine).  Our son was in Hawaii at the time, but kept in contact too.

Crazy Stomach

I am still struggling with my stomach. I seem to have taken a turn for the worse and am trying to figure out why and what to do about it. The only medication I take for it is the fiber supplements. A few weeks ago, I found one that is in a chewable form instead of a capsule. That seemed much more appealing to try in addition to all of the other capsules I take daily. Now I am wondering if that was my downfall. I am now trying an experiment to see if can determine its effects.

I am taking the full dose, 6 pills a day for three days, and then no pills for three days. I am already on the second day of no pills and I think it is better. The third day of the pill days was the worst day yet.

I am still not good, but better. I am going to try not taking any pills for awhile and see how that goes, and then try the capsules again to see if they have a different effect. This sure is a crazy problem. It is so frustrating to have health issues limit my activities. I had to back out of my golf league this year, not because I don't feel like playing, but because there just are not enough bathrooms on the course.

I did learn one interesting thing about my crazy stomach. A few weeks ago, we went out to dinner with some friends and had a really long wait for our table. During the wait, I had 2 margaritas. After awhile, I noticed that the irritation that I had been feeling in my intestinal area was gone. I laughed about it at the time, but it has never come back!

Parallel Drug Wars

My drug level for the Cellcept was too high two weeks ago, so I was able to decrease the dose I take.  The Prograf was within range, so it remained the same.  It has taken awhile, but it seems to be getting a little better.  Both my stomach and energy levels are improving, but I still have a ways to go.  My levels were checked again this  week, and they are still with range, so this must be the right dosage.  So at least now I can try to get used to this.  I am trying to find the right foods, fiber pills, and tums to keep things tolerable.

My efforts at stabilizing my stomach reminds me very much of trying to stabilize my blood sugars.  In both cases, the problems are brought on by the very medication needed to keep me healthy.  Both cases use superstitious behavior as the strategy.  When things are bad, I try to guess what I just did wrong or what I should have done correctly.  When things improve, I guess what I did right or didn't do wrong.  With all of the variables, it is seldom possible to know the answers to those questions. In both cases, the drugs are very powerful and will win every time.  It is just a matter of learned tolerance of their wrath.   I sacrificed sweets for the insulin demon.  I have sacrificed coffee to the immunosuppressant demon.  I wish they would just tell me what they want or what I should do.  Life would be much simpler.  I just have to hope that time is  on my side.  I have heard from a few people, who say that it does get better.  

Most importantly, my blood sugars are still good. Interestingly, they do go a little high when I am having a really bad stomach day.  Now that my blood sugar levels don't have those wild swings all of the time, I can detect the little inconsistencies.

Edmonton Protocol celebrates 10th Anniversary

I just read that the Edmonton Protocol has celebrated its tenth anniversary.  I still remember reading about it for the first time back in 2000 and getting really excited about it.  At the time, islet cell transplants seemed to be not only the cure, but very eminent.  I asked my endocrinologist about it and he thought maybe it would be another 5-10 years before it would be available to all diabetics.  I was disappointed that it would take so long.  It just seemed right.  I could never get too excited about the technological advances like the pump or monitors.  I knew that we needed biology, not hardware to really make an improvement.

During the next eight or nine years, I would occasionally read an update from Edmonton.  Some of the patients were still insulin independent, some had rejected the transplant, and some were in between.  There wasn't much national coverage, and my internet skills were not strong enough to keep me very current.  Little did I know that it was actually an ongoing project and that it had been advancing in the U.S. as well.  The centers that are performing islet cell transplants are all using the  protocol that originated in Edmonton, and are comparing different immunosuppressant regimens to see which works best.  Clinical  trials are advancing through the levels with the hope of gaining the FDA approval necessary to open the procedure to the public.

I still am just amazed and so proud and pleased to be one of those islet cell  recipients now.  As I  mentioned above, I knew right away that this was a good thing and I still feel strongly that islet cell transplantation is the monumental advancement needed to reach the cure.

And another increase

After I was getting adjusted to the new dose of Cellcept, I got another call from Minneapolis and it turns out that I am still not up to the therapeutic level of either drug.  So now I am on twice the amount of Cellcept from the initial dose, and almost twice that of the Prograf.  It caused another backslide for both my stomach and energy levels, but at least no headache this time.  I am glad that the doctors are being conservative and being sure that my islets are protected, but I will be glad when things are stable.  The weather has been getting nicer and I am looking forward to being outside soon.  I am hoping that my energy will be back in time to really enjoy it like I did last summer.

I also just found out that I did not get good results on my bone density test.  So now I have to take Boniva.  I ran it by Dr. Bellin and it is not incompatible with my other drugs.  Just one more pill.  It has been awhile since I got a bad lab result.  I've been spoiled lately with all the success of the transplant.

I am having blood drawn again tomorrow to recheck my drug levels.  I hope to be at or even above the therapeutic levels by now.

This is my daughter and her boyfriend who just got back from Iraq. She was able to travel to California to meet his plane.

Increase in immunosuppressant levels

I took these pictures with my cellphone after my appointment at the research clinic.  It was a beautiful day, so I took my usual walk along the Mississippi river.  

I returned home from my visit to Minneapolis on Tuesday evening.  On Wednesday, I got a phone call saying that my drug levels were too low and I needed to make a significant increase in both.  

Unfortunately, the increase has caused me to practically start over with the adjustment period with the new drugs.  I was tired, nauseated, and had a terrible headache.  By Friday, the nausea was bad enough that I was afraid I might have to leave work, so I called and spoke with Dr. Bellin.  She suggested trying Tums.  I did and they worked surprisingly well.  It got me through the day and has helped me get through the rough spots.

I have been slowly getting better as the days go by, but my stomach still bothers me a lot.  I am hoping that time will help me get through this as it did before.  It is easier the second time around.  I don't have the fear that this might be permanent like I did before.  I also know from the bloodwork done at my visit that I am not dehydrated or out of synch in my body chemistries.

The good news was that my C-peptide numbers were great.  My fasting was 1.27 and my postprandial was 5.29.

More evidence that my cells are happy with these crazy new drugs.

270 day post transplant visit

I have been feeling better lately on the new drug regimen.  I found that Citracel comes in a tablet form and that has made a big difference in my stomach problems.  Gary and I took a long bike ride on Saturday, and I didn't get tired or nauseated.  I feel back to normal.

Twice now, I have given a talk about my islet cell transplant experience at the community college where I teach a microbiology lab.  I have really enjoyed doing that.  The students seemed very interested.  Of course, no one had ever heard of the topic before, and it was rewarding for me to be able to share my experience.  It feels somehow important that I do that.  In my research for the presentation, I found that I am one of only about 300 people in the world who have had this done.

I had my 270 day visit in Minneapolis on Tuesday.  As usual, I enjoyed myself.  The whole staff is just  so supportive and so interested to hear how I am doing.  I have a steady stream of people coming in to visit or that have some business with me.  I really feel that I am part of a big project and since the project seems to be going so well, it makes it all the more exciting.  I was happy to report that I have adapted to the new drugs.  It sounds like all of the patients in this drug protocol are having similar experiences.

I had a nice walk by the river and lunch with a few of the people on the staff.  It was just great.  The only bad thing that happened was that the airline almost lost my carry-on on the way home.  That sound like it should be impossible, but it is not.  I have to have  some bad travel luck  I guess.

I have not got all of my lab results back yet, but my A1c is 5.6 which is phenomenal.  I guess my new islets like the new drugs just fine.

New drug issues continued...

I am now finished with the Raptiva/Rapamune drug regimen.  They should soon be out of my system and I can see how the new drugs are treating me.  I  think that my energy level is better, but my stomach is still uncomfortable.  I have been taking Metamucil, but it has not helped much.  I miss my coffee.  It just doesn't sound good anymore.

Most importantly, my blood sugar levels have been good.  I have had a few higher ones since I started the new drugs, but they seem to be getting fewer and not as high.

I suppose that having side effects of the immunosuppressants like I am having now is more what I expected pre-transplant.  I think that I was just very lucky with the first set.  Hopefully, the Prograff and Cellcept will settle down somewhat, but all that really matters is that they protect my islet cells.

Drug transition issues

I have had quite a week with these drugs.  I began the week feeling tired and with some stomach problems.  On Wednesday, I woke up with a bad headache that lasted more than two days.  Dr Bellin thought that I was feeling worse than what she would expect from the drugs and suggested that I get in to see my doctor here.  I was also drawn for a CBC to check my WBC count, and an Epstein-Barr virus test.  My glucose values are good  for the most part, but I am having some higher than normal post-prandials.  Some are in the 150-170 range.

The result of all of this are as follows:  My CBC was normal.  My EBV test was a little elevated, but not enough to  cause significant symptoms.  The question is whether we are catching it on its way up or down, so I will have that drawn again on Monday to compare.  My headache went away by Friday, much to my relief.  I was so afraid that it was a symptom of one of the new drugs and that I might have to live with it.  I am still feeling good about that problem being solved.  It has even encouraged me to begin to work on some of the others.

At the doctor appointment, I was tested for thyroid function, liver function, kidney function, nervous system testing, another CBC, and a test for CMV.  Everything was normal.  I did not really have a regular doctor here, so if nothing else, it forced me to get established with a new doctor.  Dr. Hicks seemed good.  I was able to get in quickly and she called me the next morning with the lab results.

I was able to correspond with one of my fellow islet cell recipients who is in the same protocol and going through the same transition  as me.  He  is having the same problems that I am.  I think we were both relieved to  hear that.

So, I am trying the BRAT  diet to calm my stomach. (Bananas, Rice, Applesauce, Toast).  So far, not any difference, but it has only been two days.  I am still tired, but am trying to work through it.  Resting doesn't really seem to help and my glucose values are higher when I just sit around.  

I  have progressed in the weaning of the old drugs.  I am down to two Rapamune pills/day. (from 6).

In spite of the physically difficult week, I sure grew to appreciate all of the support I have.  I was on the phone several times daily with Janet, my support person and Dr. Bellin in Minnesota.  My coworkers sent me home early with only concern and sympathy.  And of course, Gary is always ready and willing to do whatever  is needed.

Thanks for the comments and e-mails.  I appreciate them  all.

New Drug update

The drug levels for both the new immunosuppressants (Prograff and Cellcept) came back within the therapeutic range.  This meant that I  can start the weaning process of the Rapamune.  On Thursday, I started taking 4 pills a day instead  of 6, and will decrease by one pill per weak for four more weeks.  I took a dose of Raptiva today, and will take my lasts dose of that in 2 weeks.

I am still feeling very tired.  Dr. Bellin said that the drugs should not really be causing this, and maybe  we need  to worry about the Epstein-Barr virus again.  I hope  not, but I want to find out what is causing this so we can find out how to make it go away.

My blood sugars have remained pretty good.  I did have  one high one (178) and one low one (55).

I  had a nice day yesterday watching Gary's indoor track team win the State Championship.  It was very exciting. This is his his team on the podium.

Phase One of changing immunosuppressant meds.

I started on the prograf and the cellcept on Friday evening.  I take both of them twice a day.  They both have to be taken on an empty stomach, so I am trying out 8am and 8pm.

I am still on my full dose of rapamune, but I have already started tapering off of the raptiva.  I skipped the Sunday morning dose of raptiva, but will take it again this coming Sunday.

I have been feeling really tired the last few days.  It is probably a combination of being on both the new and the old drug regime and/or the start up of the new drugs.  I am hoping to feel better soon, either from the weaning of the old drugs, or the acclimation to the new.  I slept most of 12 hours yesterday.  I did make it through the work day, but was dragging.  I was able to teach my class this morning, but plan to take it easy the rest of the day.

Besides the fatigue, I have a queasy stomach and sometimes some aching muscles.  

I had my blood drawn yesterday to measure the drug levels of the rapamune, prograf, and cellcept.  As soon as the prograf and cellcept reach therapeutic levels, I can begin to decrease the rapamune.  I hope to hear later today.

Change in immunosuppressant regime

I have to change the immunosuppressants that I have been taking since my transplant.  I have been taking Raptiva and Rapamune (Sirolimus).  Recently, a few people have died from the Raptiva.  They were taking it for psoriasis, not islet cell transplants, and were on a dose that is  twice what I take.  But, the study doctors have decided to take all of the patients in this protocol off of the raptiva to be safe.  And, they also decided to take us off of the rapamune and start us on two different immunosuppressants.  The two new ones are both tried and true and have proven to be useful in transplants and are easier on the kidneys.  So I guess it should be  ok.  I  am a little disappointed and apprehensive.  I have been doing so well with my current regime.  My glucose numbers have been just great, and I have been lucky with having only minimal side effects from the drugs.  It seems crazy to have to roll the dice from my comfortable vantage point.  But, I really do understand that I have to.  I have not got much sympathy from family or friends with my wanting to stay on the raptiva and just hope for the  best. Anyway, it  is not my decision to make.

So, as of tomorrow, if they come in the mail today, I will  be starting on Cellcept and Prograf (Tacrolimus). Most of the questions people ask me are in regards to the immunosuppression, so I will have the twice the experience and the ability to compare.  I am hoping to be as lucky with the new ones as I was with the old.

Food allergy and antibodies

I had what was probably a mild food allergy reaction last weekend.  We were invited to dinner by some friends and during the course of the meal, I developed a dark discoloration around my mouth.  Gary noticed it after we had had the soup and the salad.  I have since found out the ingredients of both, and the only thing that I might never have had is the dried cherries.  The discoloration was gone by morning and never itched or burned, so it wasn't too worrisome.  I did mention it to Dr. Bellin and she agrees that it is probably a food allergy.  It is not listed as a symptom of  any of my medications. I would think that I would be less inclined to something like this with my lowered immune state.   

On this subject of immunity, I haven't mentioned here before that there is a study connected with the islet transplant study that researches my antibody levels.  When my blood is drawn at my visits  to the  clinic, I also have many other tubes drawn for the antibody study.  They monitor levels of various antibodies and compare the concentrations to see which are rising and which are falling.  They compare these between patients who are having successful transplants and and those who are in the process of rejecting the transplant.  The goal  must be to see which antibodies to target with the next generation of immunosuppressant drugs used for future transplants.  It is all very interesting and I can't say that I fully understand it.  But I am just pleased that I  am yielding all of this data.  

By the way, the food was delicious.  One of our friends has  retired and has been experimenting with some new recipes.  We had sweet potato/squash soup, homemade bread,  fruit and nut salad, stuffed pork and asparagus, and marinated pears for desert. It is fun having retired friends.  I can always find someone to play golf with during the week too!  One of the few benefits  of getting old.

Hypoglycemia unawareness study

I just got back from U. of Minnesota where I was able to participate in a hypoglycemia unawareness study.  The study uses subjects who are participating in an islet cell  transplant study as their subjects.  It is designed to see where the glucose is concentrated in the brain during hyperglycemia.  The test is run both pre- and post-transplant.  I did the pre test last winter and just finished the post-transplant portion this week.  The procedure is as follows:

I was given an infusion of glucose to raise my glucose to about 200 and then placed into an MRI chamber where the glucose could be measured inside my brain.  I had an IV in a foot vein so that my blood could be drawn every 5 minutes to verify the glucose level.  I also had another IV to infuse insulin if it my glucose level became too high.  I was in the MRI chamber for about an hour.

Afterwards, as a second part of the study, I was given enough insulin to get my glucose level down to about 50 to see how my body reacted to this.  Again, my blood was drawn every 5 minutes and it was recorded how much insulin and glucose I was given to maintain this glucose level.

The results will be compared together (Pre and Post-transplant) and with nondiabetic patients.  The idea is to see if a higher concentration of glucose in certain areas of the brain are related to having hypoglycemia unawareness and if so, how could this be treated.  Hypoglycemia unawareness is so potentially dangerous.  It is an important problem to be addressed.  

It was an interesting and rewarding visit.  I also got to meet another potential transplant patient who is just as excited about the whole islet cell experience as I am.  We had a lot in common.

I am including an image of my brain from the pre-transplant visit.  The MRI expert was nice enough to e-mail it  to me.  It doesn't mean a lot to me scientifically, but does prove of its existence to many who would have their doubts.

Day 200

Things are continuing to go well.  I have been getting quite a few questions lately from people who find their way here.  It is encouraging me to keep current with my blog.  It seems to be getting so long that I have been cutting back on my number of posts, just so that it doesn't seem so overwhelming.

The questions are  about 90% asking about the immunosuppressants. That was always my biggest concern too.  It doesn't make sense to trade one problem for  another.  So far, I  have had no serious problems with any of the drugs.  I may just be lucky or I may have landed in a protocol with more mild drugs.

One interesting observation that I have made lately is that I do still get some mild low blood sugars.  I just had one of 59 yesterday.  I would not have guessed that this  would happen.  I wouldn't think that the beta cells would over react like that.  Since it is only mildly uncomfortable and not at all dangerous, it doesn't really bother me.  It almost feels like "money in the bank" meaning that  I know that the cells are continuing to work well.  I still get some blood sugars that are higher than I would like (150-180), and it serves to remind me that I am not all the way normal.  I watch my number of carbs and continue to exercise to keep this from happening too often.  

Results from 180 day visit

I got my lab results back from my last visit to U. of Minn. for my 180 day check up. 

Here is a summary.

My A1c is 6.0  Down from 6.4

Fasting C-peptide is 1.17 2 hr post prandial C-peptide is 3.92

Cholesterol is 217 which is higher than last testing, but my HDL is 106 which makes that ok.

My rapamune (Sirolimus) level is within range.

My WBC count is 2.3

My absolute neutrophils count was 0.9 which is below the acceptable threshold, so I was given a shot of neupogen.  It is back  to acceptable now.

I had a kidney function test in which I was given an injection of Iohexal and with numerous blood draws it was determined how well my kidneys were able to filter it out of my blood stream.  The numbers don't mean much to me, but I understand that I passed the test.  I also had a 24 hr urine test that measured other facets of kidney function and I did well on that too.

So, all in all a good check up.  I wasn't surprised because my glucose logs and general health tell the same story, but it is still nice to see it verified. 

I have been exposed to some germy people lately.  My daughter is quite sick now, but, so far so good.

6 Months post islet cell transplant

Today is the 6 month anniversary of my transplant.  It continues to be a very exciting and rewarding experience both realistically and theoretically.  I still have a hard time believing that I can feel so good and that I have such an opportunity to be part of such a monumental experiment.

I had my 180 day visit last week in Minneapolis.  Despite the cold, it was a fun trip.  What made it fun was that I had  the opportunity to meet two other islet cell recipients.  A man who had his transplant in November and a woman who had hers in December.  They both happened to be there for checkups on the same day as me.  We spent almost an hour together comparing our experiences.  Both of them are on the same protocol as me (same drugs), and are having the same positive results.  Neither is off of insulin completely yet, but are at about the same level as I was at their stage.  We had very similar experiences.  We were all diagnosed in our early 20s, and were all  frustrated by our limitations.  We all seem to be tolerating the immunosuppressants well, although both my and the woman's white counts were under the lower limits of the protocol.  We both had an injection of neupogen to raise our white cells.  I didn't feel any different either before or after and I haven't been sick, so it wasn't a big concern for me.  

It was so nice to be able to share our experiences.  I now know three transplant patients from U. of Minn. and a few others that I have met on line.  I also get some good questions from people who read my blog or participate in discussions on the Tu Diabetes website.

Schulze address

I had my 180 day visit to  Minneapolis on monday.  More about that when I get all  of my lab results.

I was  able to get the address for the Schulze family foundation.  I feel strongly about writing them a thank you letter for their donation.  I was able to see and congratulate both Dr. Hering and Dr. Bellin during my visit.  They are both please and excited about the possibilities that this amount of money will provide.

Here  is the address.  I  hope that anyone who is excited about islet cell transplants and other approaches to  a cure  for  diabetes will send a note.

RM Schulze Family Foundation

8500 Normandale Lake Blvd.  Ste. 1750

Minneapolis, MN  55437