Patricia's Liver Transplant Experience
Patricia, age 49, waited 3½ years for a deceased donor liver after learning she had advanced autoimmune hepatitis. Her transplant surgery went well, and she was in the hospital for six days. Below, Patricia shares some of what she went through during the post-transplant period.
Before I left the hospital, the post-transplant nurse came in to tell me about all of my medications and how to take care of myself when I went home. At first, the more she talked, the more I was thinking, "Oh no, I’m never going to get this straight." It was all a little overwhelming. But when I was discharged, the nurse wrote everything down for me. She wrote down exactly when to take each medication, how many to take, what the medication was for, etc, etc. She made it so easy for me. It really helped. The nurse even contacted my insurance company and found out how I could get all the medications and got that all set up. It was really nice because I didn’t have to worry about all of that when I went home.
After being discharged, I was feeling pretty good at first. But then two days after I left the hospital, I had a bad reaction to one of my anti-rejection medications. I woke up vomiting. I couldn’t stop, and the nausea was really bad. My husband called the University of Chicago Medicine, and they told him to bring me into the emergency room. Once I was at the hospital, my condition started getting worse. I temporarily lost my eyesight, and I started behaving strangely. I don’t remember much of what happened. But it was very hard on my husband and children.
But the following morning, I woke up and felt fine. My eyesight was back. It was like nothing had happened. The transplant doctors switched me to another anti-rejection medicine, and I have not had any reactions since then.
I tell that story because it’s important for transplant patients to know that they might have reactions to their medications. My main advice is to know your body. If you suspect something is wrong, call the post-transplant nurses or your physician right away. You’re the only person who truly knows your body. All of the transplant staff are so helpful at the University of Chicago. They want you to talk to them about any concerns or issues. Remember, there’s no such thing as a stupid question.
Once I got home from the hospital after my medication reaction, things went pretty good. I was tired, but I tried to walk around the house for exercise. I gradually started feeling better and better. Within a month or so of coming home, I remember going to a communion party. But I got tired fast and would need to lie down a lot. I totally watched how I felt. I still do, and it’s been almost five years since my transplant. If I feel tired, I will rest. If I feel like I’m getting a cold, I get some extra sleep. I really try to watch myself.
I don’t remember much pain from my surgical incision after my transplant surgery. But I think I have a high tolerance for pain compared to other people. When I came home, I really didn’t take the Tylenol with Codeine that much. The only pain that I do remember is having a really bad backache. My back hurt for several weeks. The nurses said it might have been from lying in surgery and in bed so much. So, I used the heating pad a lot, and I slept in the recliner at home until my back recovered.
I used a huge pillbox that my insurer sent me to organize my medications. The pillbox had lots of boxes for morning, midmorning, lunch time, etc. At first, my husband would fill up the pillbox for me. It really helps to have someone around your home for a while after you leave the hospital. You’re not up for much at first.
When I first came home, I was taking six prescription medications. Some of them I took four times a day, some I took two times a day. For some, I need to take four tablets. Others I took two tablets or one tablet. Altogether, I was taking about 27 or 28 pills a day at first. The good news is that you only have to take some of those pills for a couple of months. Now, I only take three prescription medications: two anti-rejection pills and one blood pressure pill because the anti-rejection medicine has made my blood pressure go up. So, now I only take seven pills each day--four in the morning and three at night.
You can’t drive for a while after your transplant. So, my husband or daughter had to get off work and take me to the post-transplant clinic. I would have to be there early for blood work and then wait around to see the transplant physician. So, we’d kill time by reading books. A few times we went on the transplant floor and visited people who had just had a transplant or go see the nurses again.
I try to be really careful about protecting against infections and germs. I wash everything before I eat it. I got that spray stuff to wash my fruit or I peel everything. I didn’t really eat salads in restaurants for a long time because I didn’t know if the vegetables had been washed properly. I was extra cautious the first year. I’ve lapsed some since then. But I still try to be cautious.
I had one slight rejection episode. It was about two months after my transplant. The transplant staff called and said that my blood work was off. I had to check into the hospital for two days so that I could receive steroids intravenously. I was scared at first, but I kept remembering that I’d learned that many transplant patients experience some type of rejection episode. Boy, did those strong steroids make me hungry. I wanted to eat all the time when I was in the hospital.
A few months after my transplant, I started to realize how tired I had been before my surgery. I definitely have more energy since my transplant. I don’t need to sleep as much. I used to have to take lots of naps. Now I really feel good. People I talk to can’t believe I ever had a transplant.
I have also come to look at life differently. I can honestly say that I enjoy every day, and I’m thankful to the person who donated his or her liver.
I now work as a teacher’s assistant for 1st through 3rd graders. It takes a lot of energy, as you can imagine. I also have to be careful about catching illnesses from the kids. So, I wash my hands all the time. The funny thing is, I never get sick. But everyone around me is always sick with colds or the flu. So, I tell them you don’t wash your hands enough.