Thursday, January 21, 2010

CMV is back

My CMV (cytomegalovirus) is back.   A few weeks ago, I noticed that I was feeling a little tired.  I just couldn't get motivated to do things.  My blood sugars had been elevated about 15 units on average.  My diarrhea was a little worse.  I was beginning to wonder about the CMV.  Luckily, I was due to have it checked soon.  Ironically, I began to feel a little better and my blood sugars decreased back to normal.  I decided I was wrong about having CMV.  Then on Thursday evening, my infection control doctor called to say that my CMV titer was quite high. It's amazing how having a doctor tell you that you are sick can make you really feel sick.  The next day, I felt very tired.  Was it the power of suggestion, or was I in denial before?  Who knows?

The infection control doctor was expressing concern about me being on an antiviral again for a long term, but said he would discuss this with Dr. Bellin.  In the end, they decided to put me back on the Valcyte.  This is the antiviral that I was on immediately following the transplant and again for two months with the first CMV infection.  I have been taking it for 5 days now, and the tiredness seems to be gone.  My blood sugars are still good.  I never developed a fever.  Hopefully, we caught it on the downswing.  I might just have to contend with this for the long term.  It is not that I am catching it from someone, it is just a latent infection that my immune system would normally keep at bay.  But, being immunosuppressed allows the infection to gain control at times.  I feel comfortable with the decision to treat this with the antiviral.  I would not want to feel that tired all of the time.

Dr. Bellin was concerned that I might have CMV colitis because of my worsening diarrhea, so I have to have a colonoscopy to rule it out.  Lucky me.

I just returned from my 18 month visit to Minneapolis.  The timing was good in that I could discuss the CMV and the strategy for dealing with it with them.  The trip was enjoyable as always, and I feel very reassured and that I am in very good hands.  I will post the lab results when they are all available.  I actually had good luck with all of my flights.

Friday, January 1, 2010

2009 A Look Back

Its a new year, and decade, and a good time to take a look back at the highlight of this adventure.

From January to March, not much, and that was a good thing.  Everything was as running perfectly smooth.

In March, I switched my immunosuppressant regimen from Raptiva/Rapamune  to  Cellcept/Prograf.  That caused a few variables to fluctuate.  I had a difficult time adjusting to the new drugs.  My stomach was in almost constant distress.  I learned to take fiber pills and to rely on immodium.  I still do.

In July, I developed a fever and fatigue which was later diagnosed to be CMV.  I began taking an antiviral and it gradually got better.  It is gone now and hopefully for good.  At the same time, my opthamologist discovered a cotton-wool spot on one of my retinas.  After a few visits to a retina specialist, that too is gone and hopefully for good.

During all of this, my blood sugars were rising.  Not badly, but enough to worry me.  My one year visit to Minneapolis  was in July.  Dr. Hering assured me that they would come back to normal.  They did.  It was a good lesson to learn of patience.

In November, I had my first cold.  Thank you son, Gary.  But it was never severe, no fever, and didn't last long.  It also was a good lesson in patience.  It is a relief to know that I can fight that kind of thing off on my own.

As for now,  I still have my stomach issues.  They come and go, but are always with me.  At first, I gave up coffee, but just recently with the cold weather, I have been trying to drink it again.  I am finding that half and half helps to mellow its effect on my stomach.  Unfortunately, now I can't drink pop.  I always had a pop with lunch and really enjoyed it.  But now, after just a few sips, my stomach feels very irritated.  I fought it for awhile, but have given up for now.  Maybe when the weather gets warm I will try it again.

My drug levels of my immunosuppressants continue to fluctuate.  It is probably partly because I take them with meals instead of on an empty stomach, but I feel so much better this way.  My blood sugars are still a little higher than they have been at their best, but not enough to worry about.  I have learned some patience.  See above.

One of the things that I have accomplished this year is to find and keep in contact with other islet cell recipients or people who are interested in the subject.  These people are so valuable when it comes to comparing experiences and sharing information.  Because of the influence of some of these people, I have contacted the JDRF to see if I can help.  Later this month, the JDRF newsletter is going to have a story about my experience that I will be writing soon.  I hope that it will just be the beginning.

I continue to be grateful for this opportunity and it is such a lesson in how important it is to enjoy the value of each day.

Thanks to all my family and friends for your continuing interest and support.  Have a wonderful 2010.