Thursday, October 18, 2012

Drug Transition Update 2012 #2

I'm still struggling with my drug transition issues.  Most of my lab results are better now.  My creatinine is down to 2.0 and my potassium is down to 5.5.  Both are still too high but at least going in the right direction.  My BGs are continuing to be mostly good.  The problem is that I still don't feel good.  My stomach problems are no better and I'm still running a low grade fever most evenings.  Both of these really wear me down.

My testing has all come back normal so far.  Negative for EBV and CMV.  Negative for C. diff.  My nephrologist sent me to an Infectious Disease doctor to try to determine the cause of the fever.  He ordered several tests but also said that the fever could be caused by the drugs.

I had a talk with my nephrologist who says that if my kidneys show much more distress that she will recommend that I go off or reduce the Prograf.  When I told Dr. Bellin about this, she discussed it with Dr. Hering.  The decided that before they would take me off of the Prograf, they would want a kidney biopsy to determine that the Prograf is definitely the cause of the kidney problems.

And, to determine that the Myfortic is indeed the cause of the GI problems, I'm scheduling a colonoscopy.  This can determine if there is colonitis and if it is caused by the Myfortic.

I'm not sure what will happen if the two immunosuppressant drugs that I'm taking are indeed the cause of my problems.  I've been on and beaten by all of the best drugs now.  I think that the reason for the dramatic pinpointing of my problems is that taking me off of them will be very risky to my islets.

The fever is another issue.  It occurs mostly in the evening and varies from about 99.3 to 99.6.  It really makes me feel sleepy.  I am seriously caught up on my sleep.

One interesting thing.  When I was discussing/complaining about the low potassium diet with my nephrologist, she told me that a high carb/high insulin diet will help with my potassium.  It seems that the insulin will somehow help to get the potassium into the cells and out of my bloodstream along with the glucose.  So I've increased my carbs and insulin and hope that this will do the trick too.  The surprising thing is that my BGs are still really good.  I'm eating macaroni and pancakes and bread like I haven't in years.  I was drawn today and am hoping to see some good numbers.
JDRF walk 2012

I'm also trying to get back into some exercising.  I've been trying to listen to my body and just rest, but I'm afraid my muscles are turning to mush.  I'm doing some very short walks and riding my exercise bike.

The picture is from this year's JDRF walk.  We raised over $900 and had a great time.

1 comment:

Scott K. Johnson said...

Hang in there Kathy, I'm sure you and your care team can get this all sorted out before too long.