Thursday, May 30, 2013

BK Virus update and Symlin

I'm still fighting this virus.  For the last few months, the levels have been fluctuating between gone and low levels.  Since the goal is to have it be gone, we're not quite done with it yet.  Here are the recent test results.

Date            Serum BK                                     Urine BK                                       Creatinine
5/10/13     Detectable, not quantifiable                 4.1                                             
5/23/13     Detectable, not quantifiable                 3.4                                               1.6

My 1.6 creatinine is the lowest its been in a long time.  That is a very good sign of better kidney health and I'm thrilled to see it.  My potassium was down to 4.1 which is also the lowest its been in a long time.  I no longer have to take kaexolate every week to keep it down.

The next step is to have another kidney biopsy to determine if the virus is still causing active inflammation in my kidneys.  If it is, then I will probably have to stop my immunosuppression altogether.  I'm only taking 1.5mg/day now which is almost nothing.  Since my islets seem to be functioning well, its worth having the biopsy first.  

My recent A1c was disappointingly and surprisingly high.  The previous result was 5.9.  It went from there to 6.9 and then down to 6.5.  I really expected it to be lower than the 5.9.  My BGs were very very good.  

The only clink in the amour seemed to be right after breakfast.  This is the most common time of the day to be the weak point and it always has been for me.  My 2 hour post-prandials were ok, but Senator had been alerting me before that time.  When I would check to verify that he was right, I would commonly find myself in the 200s.  I didn't worry too much about it because I knew that I would be down soon.  The few times I covered for it, I had a low before lunch.  I thought it was just a good training opportunity for Senator.

But, the higher A1c has made me look at this differently.  At my appt with my endo, I mentioned this and we decided to put me on Symlin.  Symlin is supposed to cover those peaks in BGs.  I tried to bargain the starting of symlin for going off my pump, but no such luck. I'm doing both.  Dr. Gundabolu is very conservative with my islets and I can't fault or argue with him for that.

So far, the symlin doesn't seem to be helping much.  I started with the lowest dose.  15mcg/day.  When I was still having the highs, I started adding the insulin back in and I am almost back to where I was.  I'll be calling in my BGs soon and will expect an increase in symlin.

I hope to be spending many a warm sunny day in a kayak.  Here is the first of the season.

1 comment:

Scott K. Johnson said...

Ooh man, I love the picture of you in the kayak. I need to get mine out and on the water one of these days.

I haven't used Symlin in a while, but I seem to remember there was a point where it started working after adjusting the doses.

Stick with it - I'm sure you and your doc can get it figured out.