Sunday, February 24, 2013

Down and Out, playing mind games and feeling fine

My A1c is down to 5.9 and the BK virus is out of my blood.  I'm using positive thoughts to keep my islets safe.  And it all seems to be coming together.

My last tests for the BK virus show that it has been cleared in my blood  Finally.  Its not determined whether this is due to the immunoglobulin infusions I have been receiving or the dramatic lowering of my immunosuppression.  The virus is still in my urine, but is decreasing slightly.  It went from 5.4 to 5.2 log units.  I'll be having these tests done every week for a month along with a creatinine level to monitor my progress with this.  My creatinine is still at 1.8 which is stable, but still too high.

I saw my endo this week.  He was as pleased with my lower A1c as I was.  I asked him what he thought of all this, considering the fact that my islets are at such risk of rejection and he said he thinks its the power of positive thinking.  I do too and I'm going with that.  I asked about going back to injections since I am on such a low dosage of insulin, but he says not yet.

I realize that I'm in a precarious situation, but am enjoying it for as long as I can.  If the virus isn't cleared from my urine soon, I might have to lower my Prograf even more.  I'm only taking 2.5mg/day now, so that might mean going off of it altogether.  But, I have to get my kidneys into a better state of health.  I can tell that they are not back to normal because I still go so much more at night than I do in the daytime.  Its strange and impractical.

As illustrated by my A1c, my BGs have been quite good.  I'm at about 10 units of insulin /day.  I'm enjoying this process of seeing my insulin needs decrease.  They haven't changed much in the last few day, so I may have reached the endpoint.  I might see another small drop once this weather improves.  I'm not walking in the freezing cold temperatures this year.  I'm too afraid of getting sick at this point.  I'm enjoying this new state of health too much to risk any step backward.

Senator has been getting some good practice with lows while my BGs are on this downward trend.  He's doing very well with his training.

Wednesday, February 6, 2013

My Strong Islets!.....??

I feel a little bit as if I'm in some kind of purgatory.  In the effort to fend off this BK virus, I'm taking only a small fraction of my normal dose of immunosuppressants.  I was taking 12mg of Prograf/day and 50 mg of Imuran.  Now, I take 2.5mg of Prograf and no Imuran.  It is a gamble to be at such a low dose, but its a necessary step in treating this virus.  The antiviral didn't work and I'm gathering that the immunoglobulin treatment doesn't have great stats of success.

It is and was a very scary thing to have to do.  At first, it really felt close to having to give up on my islets.  The good news (for now) is that they seem to be holding on.  In fact they are awesome.  My BGs are rarely over 90 fasting or 120 for post-prandials.  My insulin requirements have been on a steady decline at the same time.  I'm now using between 11 and 12 units/day.  The biggest difference seems to be at mealtime.  I rarely bolus over 1.0 units and usually only 0.5 units.

My viral titer has been decreasing as well.  It started at 5.5.  It decreased only to a disappointing 5.0 after two weeks of the antiviral drug.  After 4 weeks, it was down to 4.4 and last week it was 3.9.  The titer is measured in log units, so the decrease is more than these numbers would indicate.  But, the goal is to get it down to 0, so there is still a ways to go.  I was drawn earlier this week and am anticipating that result.

I've returned to some walking and some socializing. I've even gained some weight back.  So life is good again.  I feel that I will continue to get better.  The question is what stage of me am I returning to?  The healthy but diabetic one, the transplant recipient with strong again islets, or somewhere in between?  I'm a true experiment.  And I like that.