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!

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.

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.

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.