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Before the Transplant
There were two things about the transplant process that were particularly stressful for me. The first stressful part was trying to convince the doctors of how bad I was. Once they had taken out my old lung, I remember asking my surgeon, “So, how was it?” And he said one word: “pathetic.” He said, “I’m not sure how you lasted this long.” So I knew that I had been really sick. That was one of the most stressful parts for me. The second stressful thing about the process was not knowing whether I would survive. Before my transplant, I had written letters to my siblings and to my parents. I had funeral arrangements made. It wasn’t that I thought that I would die, but I wanted to be sure that if it did happen, things were done. There is also an awful lot of illness in our family, and many of my family members have passed away. Before my transplant I had come to a point where I knew that either way I would win. Either I would be gone, and I would be up there with my loved ones, or I would live and be here. So I knew that either way I would be okay, but I was very concerned about my family. Those were the two biggest issues.
It was kind of neat, having my father as my donor. One thing my brother said about it, which is so true, is that normally a parent gives life to their child once, at birth, and my father has given it to me three times: once at birth, once with my bone marrow transplant and once with my lung transplant. At the time of the lung transplant, he was older than the doctors would have liked. He was 55, which was kind of their cut off line, so it was a little bit scary. The lung transplant coordinator at the time had said that statistically, things might not be all in my favor, but I said, “Oh, I don’t listen to statistics! I’ll do just fine.” And I did. I did fantastically. I had eight bronchoscopies afterwards and all of them were perfect.
I had been having breathing difficulties for a while. My lung capacity had been at about 40%, and then I had pneumocystis pneumonia, which brought that down quite a bit. The doctors had done PFT’s [pulmonary function tests], and they were so much lower than they had been that they just didn’t know what to do. I went in to see my pulmonologist, and I remember that it was actually two days before my birthday and he said, “We’re going to need to do a lung transplant.” I was alone that day, I can remember, and initially I was kind of okay with it because it hadn’t really sunk in yet. But then I went over to see another doctor whom I had known for many years; my pulmonologist walked over with me and told him about what we had discussed. After he left, I just started to cry. I remember saying, “I think sometimes God got me mixed up with a cat, and I wonder how many of my nine lives I have left.” That was the start of it. Before I was listed for my lung transplant, there were a lot of meetings to figure out if I would be a good candidate because of my past health problems. We also had to figure out if I was bad enough yet. Pulmonary fibrosis is what I was finally diagnosed with; my PFT’s were down, but all of the other tests they did, like oxygen saturation tests, had pretty normal results. When I ended up with a case of pneumonia, my 17th one, they decided that I wouldn’t make it through another pneumonia, and that they needed to do the transplant. But before that, I remember a couple of meetings, one in particular, where they had turned me down, saying that I wasn’t ready yet. I probably had about 15 friends and family members with me in the room, and I was the only one who cried, because I knew that if I walked up more than four steps, I would have to stop to catch my breath. I was taking care of little ones at the time, and I couldn’t read them a whole story without getting out of breath. It was horrible- I remember thinking that I had to think about breathing. Every breath I took was an effort. Taking a shower was a huge deal. Sometimes I would be up all night with four pillows in bed and still not be able to breathe. And I was the only one who really knew how hard it was.
I was four years old when I first learned that I needed a transplant, so I don’t really remember what it was like. I do remember that I was very frightened and I didn’t want to talk to anyone about it because I was scared that I’d look ugly or they’d give me bad advice or something. So I was kind of frightened about having a kidney transplant. At the same time I was very nervous and I didn’t know what was going to happen. I’d heard of rejection. My mind was going haywire. So I was just very nervous.
My biggest worry might be about friends, actually, since I’m not in school and it’s really hard for them to visit me. I’ll probably go back starting next year in high school. When I go back, will they remember me or will they have all different friends? I don’t’ know if I’d be like an outcast. I’m also worried about the whole thing with the heart. Everybody says it’s no big deal, but it seems like more of a big deal to me than everybody else makes it. Everybody says this is the easiest surgery that they do for your heart but it doesn’t seem like that to me!
I found out that I needed a transplant after getting a brain MRI done- they did an MRI because it seemed that a tumor had formed in my brain. While they were doing studies of the tumor they found out that my liver was also sick. I believe it was about the same time that they said that I was going to need to be put on the liver transplant list because my liver was already pretty worn out. Before the transplant, the thing that really got to me was walking- walking had begun to be a big thing for me, because I was really tired all the time. Another thing was that I was on oxygen, so it was hard for me in school, with the oxygen tank. You’d think that missing school would have been preferable for me or that I had a good excuse, but after how sick I’ve been not many things seem like a good excuse for being absent from school. I was at a good school, and they were very understanding. They had a fundraiser where they were able to collect some money for my hospital bills.
I was scared before the transplant. I knew it was a big thing. I think I was on the waitlist for a couple months- it wasn’t long at all. In June they called me and said that they had a liver ready for my transplant. I remember thinking of a clock ticking, running out of time. What else can you imagine? You’re going for something good, but you know there’s going to be all of this aftermath. I remember every day since I was put on the transplant list waiting for that call saying they were ready for me to come in. I knew it could come at any time. I remember when we came in to the hospital for an appointment being given a pager that was to be worn all the time by one of us and it would only show one number- the number from this hospital. So it was June and all of a sudden we had a page- it was the hospital number. I went into panic mode. I was scared, I was crying, I locked myself in the bathroom, and I didn’t want to go. I didn’t have the strength at first to push myself to go there. I didn’t understand why I had to go, and why there wasn’t anything else in the world that could make me better. Then finally the transplant coordinator told me that I needed to calm down and I took some medicine to help me with that feeling. Then we got in the car and went to the hospital, but I had a fever, so they weren’t able to do the transplant that day. One of the things that I remember is that when we went to the operating room they were doing some blood work that they needed before the anesthesia. While they are doing that, I couldn’t drink or anything. But then I remember I had to drink three big jugs of this liquid that cleans out your system. I remember it was like licking a battery- it had a metal flavor. That was the worst thing, and I had to drink them all. I still don’t like it when I have to drink something for contrast, like when I have my CAT scans. I remember getting over it finally, though.
I think people are all amazed with how well I’ve done, because I was just so bad before. I couldn’t go out with my friends, couldn’t go watch bands- it got to the point where I just couldn’t do any of that stuff. I wouldn’t go to the movie theatre because I would cough the whole time and people would just get mad. Now [after the transplant] we can go to a club and I can go dancing and not get out of breath. Me and my girlfriend, we go to the Y every day- well, every other day. So I have more energy and it helps.
At the age of twelve, I suddenly got sick. I had a cold. From that cold, my heart caught a virus and swelled up; it got too big for my body. It all began with this cold. I wouldn’t eat because every time I would eat, I would throw it back up. They gave me antibiotics for seven days because they thought I had pneumonia. For those seven days, I stayed at my sister Mary’s house. Mary saw that I was worse than ever. She was doing her best, and I still wasn’t eating. The only things I would eat, without throwing it back up, were tomatoes and Doritos with vinegar. They saw that I was getting skinny and that I was pale. They decided to bring me to the Emergency Room. When they saw me, they knew something was wrong with me; from the waist down, my lower half, my body was full of fluid. Just by looking at me, you could tell there was something wrong with me. My lower half was big. The doctors wouldn’t let me eat or drink, and trust me I was very dry- I really needed some water. They ran some tests on me. They took chest x-rays and seen my heart was swollen up, and too big for my body. After the doctors talked everything over, they told my mom that I needed a heart transplant and that they were going to keep me overnight. By that time I didn’t know what was going on, but of course everyone told me what had gone on later. They ended up connecting me to an ECMO machine. The machine works by taking all the blood out one side, going through the machine that gives it oxygen and goes back in through the other side. I also had a breathing tube through my mouth, so I wasn’t able to talk. The breathing tube was helping me breathe. After they took me off of ECMO, everything was still the same, but little by little I was feeling a bit better. It took quite a while for me to get better. After recovering pretty well they sent me to another hospital. While I was there I met lots of people. The people are really nice, and they treat me very well. After being in the hospital for two months, I was still waiting for my heart. Meanwhile I was connected to a big machine that was an artificial heart [a ventricular assistance device]. It works by pumping my heart while mine was resting. It’s located across the stomach but about two inches higher than your belly button. After lying in bed for two months I forgot how to do lots of things. The nurses had to teach me how to eat and walk again. The food they started me off with was baby foods, and custards. I still wasn’t able to drink. My legs were weak; I started walking with a walker. It took a while for me to walk on my own. While I was relearning to walk, I would have lots of nurses and doctors in my room with me. They used to keep me busy. One of the doctors would come to my room every day to play checkers with me. One of the secretaries who worked there would treat me like her daughter. She used to bring me food, pajamas, and books to read while I was in the hospital. While I was waiting for my heart the nurses would take me outside to have lunch with them, but while doing that I still had the artificial heart connected to me. It was always a hassle to bring me to lunch because of the machine. That was after I relearned how to eat. When I had a new nurse who had never taken care of me I had to teach them. When they would do something wrong I would be like, “No- it’s not like that; it’s like this.” They would always double-check with the doctors to see if it was right, and of course I was. Everything was so easy to me. I felt like I could do it myself, but it’s not possible because I was a patient. I was always looking forward to the next day. Once in a while, whenever they were able to, my family and friends would come see me. There were times that my boyfriend at the time would come see me too. While waiting for my heart, I had a few false alarms. There was one time when my boyfriend was there and I had a false alarm. Believe it or not, I wasn’t scared. Every other day was the same as always. One night, at about 2am, they woke me up. They told me that they thought they had a heart for me, but they had to check if it matched my blood type, and had to run all different types of tests. This heart was the one. While they were running tests on the heart, I was in my room waiting to hear if it was right for me. Yes, this was the one. My mother was with me that night. She was happy about it, but nervous as well. I wasn’t scared at all. They took me to the pre-operation room. While they were setting everything up they put me to sleep. After that, I didn’t know what was going on, but I do know that the operation took 8 hours. My mother was waiting desperately to know what was going on. The doctor came out when they were all done to tell my mother how everything went- they told her that everything was fine.
A few months ago I ran away again. I had my reason for running but this time I made a big mistake. After that I was placed in a respite home. The day I got there my body was sore all over. I was walking very stiffly and would hardly move. The next morning when I got up I woke up coughing. I would cough ever day since I’ve been here. Suddenly I started to notice that I was coughing up blood. At first I didn’t think anything of it because the night before I was drinking orange colored juice. I was thinking that it was the juice that I was coughing up. That morning I had gotten the woman I was staying with up and told her what was going on. Minutes later she called the on-call person. Then she called the hospital, and spoke to my cardiologist. My cardiologist also spoke to me. She told us to go to the nearest hospital. When I got there they had to get me a chest x-ray. After my x-ray they looked at it to see what was going on. From the x-ray it seemed that my lungs were full of fluids. They also noticed that I was very pale like always. I personally didn’t think they would admit me but they did. I was admitted to the Cardiac ICU, where they started me on some antibiotics and some steroids. ... Today has not been the best. I’ve been having a headache all day, nonstop; why I don’t know. This for me is normal but not fun. It’s about 9 or 10 and my nurse for the night tells me that my cardiologist called to see how I was doing. The next thing you know it is 11:10 and she is knocking on my door. I was confused because they had told me she called a little while ago. Of course I was wondering, “What is she doing here?” She comes in and tells me, just like that, “What if we get that crappy heart out of you?” I asked her what she was trying to say. She told me that they had my heart. When she told me that headache went away. I was so excited- I couldn’t believe my ears! I seriously did not know what to do or think. I had to make some phone calls and let everyone know the good news. To me the weird thing was that my social worker and I were talking about having a feeling the heart was going to come this weekend. For some reason I had a very strong feeling about things this weekend. Things like that happen to me a lot- I get a feeling about something and it’s usually true. After making my phone calls and stuff I was still too excited. They had told me that they were going to take me down at around 3AM, but they actually didn’t end up taking me until 5AM. While we were waiting the anesthesiologist was talking to me about anesthesia and how it works. After they took me down I didn’t know what was going on. People told me that the procedure took about 7 hours.
When I was on dialysis, I really missed cantaloupe and potatoes. Those are my two favorite things, and they are at the top of the list of really bad foods. With dialysis you’re not supposed to have high-potassium foods, and cantaloupe and potatoes are high-potassium foods. I mean, I could have them once every two months, but I couldn’t sit down and have mashed potatoes with French fries!
Not drinking a lot of fluids was hard- especially around here during the summertime because it’s humid. I had flavor ice, which is 2 mL, and I’d have 20 to 25 of those a day. They kept me hydrated during the summer. I didn’t really want to be outside that much; I stayed in the air conditioning.
When I found out I was going to get a transplant, I was worried and happy. But more worried than happy. I was worried about what it would feel like after.
When the doctor started talking about transplant, I would not even look at him. He was sitting right there on the bed, and I would not even speak a word to him.
Before my transplant, I could do things, but it just took me a while. I couldn’t run as much before my transplant; I didn’t have a high enough energy level. I knew my limit, and I knew if I had to stop and sit for a second.
I was against the transplant at first. I didn’t want to hear about it. Someone suggested I talk to one of the transplant patients, so I did. The person who was waiting before me, explained the medicines and everything, and I started to understand. He told me that he wasn’t crazy about transplant either when he first heard of it. He helped me. Actually, a couple of years back, one of the doctors had asked me to talk to one of the new girls.
When I was finally listed they gave me a beeper and I went home and waited. Every day I would hope for that heart to come in, but the beeper would never go off and they never called. It was a very difficult wait, being so sick and just wanting to be better and out playing with my friends. It was certainly difficult and stressful for my family and me. It was hard to wait, because you didn’t know when it was going to come in and when they were going to call. It was just so confusing.
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Issues Before Transplant
Nervous
Worries
Before my Transplant
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Copyright © 2005, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. July 26, 2005 |
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