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.


Gary said...

It's good everything is improving for you Kathy. Seems to me that a way is needed to determine how well the islets are doing to get the right amount of immunosuspression, neither under or over. I've read of a new positive-charged Nanoparticle for Magnetic Resonance Imaging of islet transplantation but don't know where / how it is used. Perhaps that is worth asking about.

Scott K. Johnson said...

So glad to hear that things are looking up! You're a trooper!

Karen said...

Yay, that is fantastic news!!

Kathy said...

Thanks for the encouragement through this. I'm getting my final immunoglobulin infusion now and am hoping to get my picc line out at my ID doctor appt later today. BGs are continuing to hold steady. Life is good.