Managing the Chaos

We were discharged with nine different medications, some of which had three doses a day, some were twice a day, and some were only once a day. Some were being weaned, so the doses were continually changing. We just about drove ourselves bonkers trying to keep track of which ones were due when, and which ones we had given each day.

Our transplant nurse gave us a spreadsheet that we put in a plastic page protector. It had rows for the medication type and dose and columns for the day and time it had to be given. Below is a basic version of what we had, just for reference.

Sunday Monday Tuesday Wednesday Thursday Friday Saturday
8A 8P 8A 8P 8A 8P 8A 8P 8A 8P 8A 8P 8A 8P
Med 1; Concentration; Dose
Med 2; Concentration; Dose
Med 3; Concentration; Dose
Med 4; Concentration; Dose

We would use a dry erase marker on the page protector to X out the doses we gave each day, and at the end of the week we’d wipe off the Xs and start all over. That way we didn’t have to print off a new sheet every time. As we weaned off of each medication, we’d just cross out that row so we wouldn’t get confused. And once he had weaned off enough of the medications, we created a new sheet with just the few remaining ones.

Now we depend mostly on alarms on our phones, because we only have three medications, and it’s easy enough to keep track of most of the time. However, when we go on trips, and we know there will be distractions, I create 3X5” note cards with the dates and times of doses for each medication so I can cross them off, just like we used to. That way I know what we have and have not dosed.

We also have a checks and balances system in place, and the rule is “no hurt feelings.” Everyone has alarms on their phones for medication times, and whoever has N at the time medications are to be administered is responsible for texting the other family members once the medicine has been given. If they don’t send out the “all clear,” the other members reserve the right to text or call them repeatedly until the “all clear” is given. We always double check each other, and we never turn off our alarms unless at least two others still have their alarms on. Once the alarm sounds, it is never completely silenced until the medication is actually administered. It can be snoozed while we draw up the medicine; but it isn’t stopped until he’s been dosed. That way, we don’t miss any doses, because it is so unbelievably easy to forget one.

The only time I’ve missed a dose was when I turned my alarm off instead of snoozing it before I actually dosed N. I was taking his vitals, left the meds on the counter, and completely forgot them while I was logging his vitals. I walked right by the syringes and went off to bed. When I saw them on the counter in the morning, I was devastated. I panicked and told transplant right away, and I felt like an utter failure.

Setting up these alarm policies and the accountability with other family members has kept that from happening again. I highly suggest you implement similar practices if you haven’t already set up your own system. It keeps me sane and helps me manage the chaos that is immune suppression.

About kharris

Kate Harris is an aerospace engineer for the United States Air Force. She is also a wife, mother, baker, quilter, and, now, a blogger!