Monday, September 24, 2012


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 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. 



  1. Well they tell you to take the BPs and then don't believe them, so you might better spit into the wind. So don't - DO NOT - feel badly about this. Maybe they need to consider that their attitude (and this extends to all medical people) has a huge impact on compliance, eh? I'll defending you against anyone who has the nerve to criticize you or M even subliminally. Go find better parents......and good luck with THAT one! Dont you dare ever feel you both haven't done everything you could - and more - and try to remember that you are, after all, only human!!! You are amazing parents!!!!!! From Judy

    1. Well, to give them as much credit as possible, it was the dialysis team that never believed our BP readings, NOT the transplant team. And oddly, we kept on taking those reading for the dialysis team, but didn't carry on for the transplant team. I think it was such a relief to NOT have to do dialysis that I 'threw out the baby with the bathwater' on the BP thing LOL.

      And thanks for sticking up for us! It's great to have supportive friends!