Accuracy.....

Keeping accurate track of Babygirl's many medications is one of the many challenges of post-transplant life. The fact that two of these medicines are now liquids makes it even harder for us to make sure that not only is she taking her meds, but that she is taking the right amount.

After all, a pill is a pill is a pill.  At one point we were pill-splitting her prednisone so we wouldn't waste so many pills, but cutting a 20 mg. pill in half can be done fairly accurately and with little crumbling if you have a good pill splitter (ours has a silicone base to cushion the pill - it never accidentally crushes anything).  Besides, I know what prednisone is and how it works, and I know that the difference between 10.5 mg and 9.5 mg isn't going to make a big difference in the long run.

Her Mepron is taken 10 cc (two teaspoons) at a time, a fairly high volume of liquid.  If there is a bubble in the syringe taking up 0.1 cc of space, the dose is only decreased by 1%, which, given the function of the medication (prevention of parasitic infections) is insignificant.

But the Cellcept is another story.  It's an anti-rejection drug, and its effectiveness for this purpose is dose dependent - more medication, less rejection.  Its side effects are also dose dependent - more medication, more risk of side effects.  Since one of its adverse events is neutropenia, and Babygirl HAS neutropenia, the dose has been decreased from 250 mg. in the morning and 500 mg. in the evening to 250 mg twice daily, and now to 160 mg twice daily.  The smallest available pills are the 250 mg ones, so we have had to switch to liquid.

Liquid Cellcept is 200 mg. per cc.  One cc is 1/5 of a teaspoon.  To measure this we have 1 cc syringes - the size of an insulin syringe.  She takes 0.8 cc.  It is challenging to be accurate with this. 

The liquid is white, and while it isn't thick, it is opaque.  The first time I measured it out into 14 small syringes, I noticed that after a while I could see a pretty good sized bubble.  So I set the syringes in a cup, dispensing end up so the bubble would rise.  The average bubble was 0.1cc. This is a 12.5% decrease in the expected dose - 140 mg instead of 160.  They already decreased her dose by over a third.  This level of inaccuracy MATTERS.

In addition to that, it's been difficult to make sure the syringes of medication get taken.  When it was just the Mepron, one syringe each morning, I know Babygirl forgot to take it periodically.  I found one full syringe on the floor under the table the pill sorter sits on.  I've had a syringe left over at the end of the week.  Again, given what the medication does, I'm not too worried about the odd missed dose. 

I AM worried about missed doses of anti-rejection medications.

So..... to improve compliance, I tried putting all three syringes in a plastic bag, one bag for each day.  It was bulky, took up too much space on top of the pill sorter (remember, our sorter is an enormous thing the size of an old laptop), and the syringes still ended up on the floor, and we were throwing away a million little bags.  So now each dose has a sticker giving day of the week and time of dose (AM/PM), and the 3 daily syringes are rubber-banded together, and the bands can be re-used.  This seems effective so far.

When all we had were pills, it took less than 15 minutes to sort for a week, even when we had dozens of pills.  With the syringes, and the painstaking process of removing all the bubbles, and the labels/banding/pill sorting, it takes over half an hour.

Worth it to keep her healthy, but I'll bet it's something the docs don't give even a minute's consideration to.  I know I wouldn't have.

DeeDee