Debbie's Post-Transplant Experience
Debbie is a 42-year-old transplant patient who has received two kidney transplants and three pancreas transplants. Below she shares some of her post-transplant experiences.
On Clinic Visits
The clinic visits provide a forum to visit and share your transplant journey with other recipients. Talking to other transplant patients can really help to alleviate your fears and anxieties. Many times we are able to find the humor that we experience, and it brings us together.
You really get to know the other patients because you see them at clinic so often, especially if you are transplanted about the same time. You’re going through the same number of clinic visits, three times a week. And then you all celebrate when you’re cut down to twice a week. You will go through these milestones together.
There’s such a nurturing, calm atmosphere at clinic. The three post-transplant nurses are all remarkable women. The wonderful thing about them is that they really take good care of your psyche and not just your body. Whenever I get worried or upset, they always calm me down and talk me through it. They’re so amazing and dear. They really do care about each patient.
There are some times when clinic takes longer than the usual three or four hours, which can be upsetting. But never in a million years can you skip a clinic. You can’t think, “Oh, I feel great, I’m not going to go to clinic today.” Because you can feel great and still have problems show up on your lab work. So it is vital that you do everything by the book. And never, ever be afraid to ask a question.
You think of the word “biopsy” and become frightened or overwhelmed by the concept. I quickly learned that it is a simple procedure. I was so relieved after my first experience. Don’t be alarmed if you are told you need a biopsy. They are very common, especially during the first few months.
In the beginning, the medications you need to take seem overwhelming. I think it is important that each patient come up with a system that works best for him or her. In the beginning, I would constantly read the labels and use the pill sheets with the pills taped on them. Then, I got this wonderful pillbox from the National Kidney Foundation of Illinois (Phone: (312) 321-1500), which lets you organize your meds by the day of the week. Then, if you’re going out for the day, you can take out the pills for that one day and bring it with you.
I also always carry at least two days worth of medication in my purse. This way, if there is any circumstance that keeps me away from home, I have my meds. And there’s always a chance you might have to be hospitalized. So it’s always smart to bring your medications with you if you are admitted. Sometimes it can take a while for the hospital pharmacy to receive our orders.
On Medication Side Effects
All the immunosuppression has gotten so targeted, and every two years or so, there are new medications that cause fewer side effects and are less toxic to our organs. I’ve noticed a big reduction in the number and severity of side effects that transplant patients live with since I received my first transplant eight years ago.
The first three months after your transplant is the hardest in terms of side effects. Your doses of immunosuppressives are high then, including the steroid prednisone, so your emotions are very heightened. You feel like you are on a roller coaster. A teeny tear will turn into a half hour crying jag, and a giggle works into riotous laughter. It can feel strange. But as your doses are lowered, the side effects seem to disappear.
On Transplant Milestones
The three-month mark is a big milestone because your doses of immunosuppressants go down a little bit, and you can sometimes cut back on your number of clinic visits. And then at six months, it happens again. And, obviously the one-year mark is a big milestone. If you can get through one year without a rejection episode, it is really wonderful. Every case is so unique. And you never know what might happen. I believe it is so important to be your own advocate and ask questions of the medical staff. We have been blessed by the gift of organs and MUST always treasure and respect them.