Saturday, May 23, 2009

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.

Wednesday, May 13, 2009

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.

Wednesday, May 6, 2009

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.