Wednesday, August 22, 2012

Week Seventy - Simplify.....

Babygirl's switch from Prograf (tacrolimus) to Rapamune has simplified her life a bit.  She still has to take medications twice daily, but instead of eight tacrolimus capsules twice daily, Rapamune is five pills once a day, a net decrease of 11 pills/day.  Between that, and the decreasing doses of prednisone, the elimination of her nightly Zantac and a decrease in her Cellcept (mycophenylate) dose from three to two daily, her pill sorter seems almost empty!

Eleven pills in the morning, down from nineteen post-transplant. Five pills in the evening, down from sixteen.  And she's still drinking two teaspoons of the yellow-tempera-paint-like mepron daily.

I have to admit that life has gotten far from 'normal' if you are thinking, "Hey, my kid is ONLY taking sixteen pills a day!"  But I think what makes it seem easier is not the number but the frequency.  This time last year we were dealing with our first week of dialysis, our first post-op recovery, and weekly injections.  The pills then seemed overwhelming, and she was 'only' on ten pills a day then, but she had to remember to take some with every single meal and snack.  Four or more times per day versus two?  Gimme two, regardless of the pill count.

Studies show that compliance drops dramatically each time you raise the number of pill doses per day.  Almost no one is truly compliant with a four dose a day antibiotic, but most people can manage once daily just fine.  Early AIDS therapies required people to take medication every FOUR hours - six times daily!  That meant alarms, midnight wake ups, and so on, and very few people could manage. 

I am very glad that we never had to try for three daily doses of her medications post transplant.  I can't imagine that we could comply, even with a full understanding of the price of non-compliance!  I'm very, very glad that things are getting less rather than more complicated. 

Of all the many things I have to be grateful for, this was what was in my heart today.  After all, it was pill-sorting day.


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