About two days after Abby had been moved from the CICU into her room on the floor at the hospital they began switching a majority of her medicines from IV to oral. As one medicine would come off of the IV pole (which you can see in the picture below), it would mean at least one and up to 5 or 6 pills (depending on the dosage) Abby had to take by mouth. Her little pill cups were filled nearly 3/4 of the way with pills.
Abby was also having terrible issues with insomnia at this time. The hospital, her aching muscles and scoliosis, and her reaction to new medicines was really making sleep a near impossibility for her. It was during one of these restless nights where we were up every hour or so dealing with these problems that I had a dream. In my dream it was nearing the 12th hour–and by that I mean that Abby’s anti-rejection medicines need to be taken strictly 12 hours apart as part of keeping rejection of the new heart at bay from breaking through the medicine’s defenses. It was literally minutes from the 12th hour in my dream and I was frantically trying to get Abby her medicines. The only problem was that they were all mixed into this HUGE bowl of Skittles! I hope you all laughed…because I woke up laughing, but also a bit flustered. You see, in the hospital someone else was in charge of getting Abby the right meds at the right time and the right doses, but subconciously I knew that once we went home this would be my responsibility. In a house of eight, with five of those being little boys under the age of 9, you can imagine how hectic our house can get. I was really fearful of keeping all of these medicines straight.
A few days later we were beginning our discharge instructional teachings. After a heart transplant, these teachings and discharge instructions take a while. They spread them out over a couple days. One of the requirements was that we had to have our pharmacy fill all of Abby’s prescriptions and bring them to the hospital so Emily, the Transplant Nurse Coordinator, could go over every medicine, make sure the dosage was correct, and make sure we understood how and when to administer it. I stayed at the hospital with Abby while Justin went to fill the prescriptions. He came back to the hospital with two large green sacks filled to the brim with prescription medicines. Although we had discussed all these medicines numerous times with different people on Abby’s transplant team, and although she had been getting these in the hospital already, seeing them all in sacks in Justin’s hands really gave me a short bout of panic.
This sounds silly…dreams of pills in Skittles because I am so fearful of getting everthing straight and a near anxiety attack at seeing the bags of medicine…but let me show you why:
That is sixteen different medications for those of you keeping track. The pill box helps us keep track of all of them at the right times.
Abby’s daily pill intake looks like this! These pills are what are keeping her heat beating. These pills are what are keeping her body from rejecting that heart. These pills keep her body from attacking the heart. These pills also keep her blood pressure in check since she was having problems with high blood pressure in the hospital. These pills replace her body with precious nutrients that the anti-rejection meds strip from her. These pills help her body get rid of excess fluid build up. These pills help her non-existent immune system fight off bacterial, viral, and fungal infections since her body can’t do that on its own right now. These pills are Abby’s lifeline right now. Getting them to her is imperative. These medicines need a very precise amount in Abby’s system, thus the strict 12 hour regimen, to keep all her systems functioning properly. If an hour or two go by when the meds are wearing off in her system breakthrough rejection can occur. Our daily schedule revolve around these pills right now.
So, although my reactions to these medicines may be funny and a bit extreme, I think given the importance they play in Abby’s life right now, you can understand my anxiety over getting them to her and getting them to her just right.
We also are getting used to AM and PM rituals that include taking Abby’s blood pressure, temperature and heart rate and recording them, as these can often indicate problems that warrant immediate calls to the nurse coordinator. Luckily, Abby has been steady and sure so far. Additionally, if Abby goes outside, she must use suncscreen on every part of her skin that is showing and wear sunglasses, as she is at an increased risk for skin cancer now. And lastly, when Abby goes to clinic visits, she must wear a mask to help prevent her from catching anything.
Our new regimen is a bit crazy…but getting easier the more we do it. Some of the pills Abby will be able to taper off over the next few months. Abby’s body was slow to kick in at first but now, her Prograf levels are high so she has already been able to remove three pills of the handful she takes every day. Eventually, she will only require 5-6 twice a day at exact intervals. Until then, we are grateful that these medicines are around and that the last ten years have seen a dramatic improvement and understanding in how these drugs can be used to help these transplanted hearts work for their new recipients!