Compliance.....

Compliance is a term used in medicine to indicate how well a patient if following directions.  If I'm told to take a pill once a day and I do, I am compliant.  If I'm told to follow a diet and exercise program, and I don't, I'm non-compliant.

With Babygirl, compliance is largely up to us. We buy the medications, make sure the refills are called in on time, sort the pills and measure the liquids into syringes.  I have a text message sent to my phone twice daily from MyMedSchedule.com to remind ME to remind HER to take her medications.  I take schedule her appointments, TAKE her to those appointments, and make sure any necessary tests get scheduled and performed in a timely manner.

I've been doing all of this for almost a year and a half now.

All except one thing.

We are supposed to monitor Babygirl's blood pressure at home.  Daily, preferably.  While she was on dialysis, I actually DID check her blood pressure daily.  We went through a series of automated blood pressure units, and each had its inadequacies, not the least of which was that the dialysis team never actually believed their readings. They were so much lower when taken at the dialysis clinic.  Yet, still, I got the measurements.  I wrote them down daily with her weight, temperature, and the dialysis machine statistics.  And because Babygirl and I were perforce together every single evening and morning to hook up and unhook the machine, it was simply a part (however useless it appeared to be) of our daily routine. 

Since the transplant I have checked her pressure perhaps 3 times.  Seriously.  She gets it checked weekly at the clinic, more often when she's been admitted.  I actually purchased a manual monitor to overcome the perception that the electronic one doesn't read accurately.  And I used it.  Three times.  Okay, maybe four. We just aren't tied to collecting data in the way we once were.

It's become something of a joke at the transplant clinic, although I know they do not find it truly amusing.  And today they decided to make their displeasure clear.

Babygirl came home today wearing a 24 hour blood pressure monitor.  It will have to stay on until after her lunch period tomorrow and be removed by the school nurse.  She can't go to gym at first period.  At least it will be off before swim practice.

Ugh.  I know they don't mean it this way, but it feels like she is being punished for MY noncompliance. 

DeeDee

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.

DeeDee