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.