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After the Transplant
I remember waking up from the transplant surgery and just being able to breathe. I remember the first thing that my mom said to me was, “You finally have color again; you have rosy cheeks again. You know, you just had no color before.” It just was so much better it was unbelievable.
Recovering after the lung transplant was a slow process for me because the surgery itself is so invasive. I’m so much better than I was, but the cold weather bothers me, and extreme heat bothers me. I just had my first pneumonia in the five years since my transplant, which was kind of a bummer. Even though it’s not terrible, it restricts your passages; when I get colds, I get them worse. But I think life after the transplant was better than I expected. If I hadn’t had the lung transplant, I wouldn’t be here today; my lungs are so much better than they were. But I only have the one; my right really doesn’t function much at all. So my lung capacity is still down, but it’s so much better than it was. Compared to how I was before, I have a whole new life. I couldn’t have asked for more out of transplant.
After my heart transplant I was very sick because my body was rejecting my heart and it made me feel very sick and I had to go in for medicine and get biopsies twice a week where they go through a vein in your neck with a needle and they thread a catheter through and then they scrape a little piece of the heart tissue to see if you have any rejection. Rejection is when your white blood cells do not recognize your heart and think it is some bad virus or disease because it is not your original heart and your white blood cells try to attack your heart. So I kept having rejection because the medicine that I was on was not powerful enough so they sent me to Pittsburgh to go on an experimental drug called FK 506 and while I was on FK 506 I was still on steroids from my old medication which made me very happy and fat. So I got very sick from that but then I go off the steroids and felt better and the new drug is working very well and now I have no heart rejection at all.
You always know the next thing is ahead and the worst could happen. But the way I figure it, you’re crying over spilled milk, basically. You can be depressed over it, but what happened, happened. Get on with it. The next time around I’m going to be that much more cautious. I had a really good transplant and did really well with it- I know I did. There is really nothing that I would change except for the last month, when I was sick and I didn’t take my medication and I didn’t think it was that big a deal. That little mistake is what did it in. But there is a reason for that. You know, I’m not kicking myself over it; I’m not getting depressed over it.
You’re going to feel so much better after the transplant. I mean, you’re not going to feel better right when you get out of the hospital. But after a while you’re going to finally want to run around, and you’re going to have so much more enthusiasm for stuff and it’s just going to feel so much better. Before the transplant I was always tired and I didn’t feel like running. I thought I was this huge couch potato. But since the transplant I’ve done so much. I’ve done soccer and I’ve done ballet and I tried out for track. So it’s going to hurt right after but you’re going to feel so much better a week to three weeks later.
The day that we were supposed to go to the hospital so I could get treated for rejection, we also went to the mall. It made me feel a little bit better but at times I was just afraid. I would put on a smile and I would laugh and try to act normal. But inside I was really scared and had that gut feeling like, “Oh my god, what if this doesn’t work?” Just having to lose my mom’s kidney would be really bad and I would cry forever.
I hardly remember the actual operation- I know my mom was really nervous when the operation was actually done, and I was a little nervous, but thanks to God’s help and the doctors the surgery went fine. To this day I have no problems with my liver- no rejections of it. My transplant recovery was pretty fast- soon I was out of bed walking around, and I remember I wanted to get out! I don’t like having to lie down. After the transplant, if I went to a pool to go swimming there had to be chlorine and it had to be being cleaned all the time. I couldn’t swim in a lake or pond because the water wasn’t being moved. I stayed away from malls and sports for over a month so I wouldn’t get sick from some little minor thing. When I got sick in April of this year is when I really got down. But it only was and only is a minor setback, as people say. I’m not too worried about it now. But back then I got really sick from pancreatitis- everything was going wrong- my blood pressure, my temperature, everything was going sky high, and we couldn’t understand why anything was happening as it was. I remember that I was in Worcester and they wanted to fly me out to Boston, but at the time the terrorist alert moved up to the one where they don’t move people unless they’re in critical condition. I was in a coma-like stasis for two and a half months. I remember being awake and waiting in the ER in Boston. I remember seeing the coordinator- she said hi, and that I was going to go with her. I don’t remember anything after that really until I woke up, and when I woke up it was the end of June. My mom’s birthday is in May, so we were going to go out the weekend after that and I asked about it when I woke up. And they said, “It’s so weird- it’s like your memory fell asleep and you were thinking about the same thing the next day. It’s like nothing went on- your memory just paused until you actually woke up.” I remember thinking, “Where am I?” I remember at that time I had a lot of tubes and it was just so strange. I said, “When are we having the party?” And my mom said, “What party?”
The most stressful part about my transplant was right afterwards, when I went home. I felt so good and I wanted to do things. But my mom and my aunt were helping to take care of me, and they wouldn’t let me do anything. That was so frustrating to me, because I was like, “I want to go out. I want to go to the mall, I want to go shopping, and I want to run around.” That was really so frustrating, because they told me, “You can’t be out; you just had this major surgery. You need to be in bed.”
This was my biggest thing after the transplant: I said, “I am going to totally do something positive with this whole experience. I’ve been lucky from day one.” The donor family contacted me, and I’m in contact with them every day. I got my certificate with the New England Organ Bank to talk to schools. My transplant coordinator has my email to give out to parents and to other people who want information. I just totally want to turn this around into a positive for other people and to help people. I felt like I owed it to my donor, I owed it to the person who didn’t get the lungs, and I owed it to myself.
I had a pretty good life before. I mean, I went to Germany but I took oxygen with me and I couldn’t walk up stairs. I was still trying to do everything I could, although I struggled and I got sick all the time and was in the hospital a lot. My quality of life was really getting bad. And it’s weird, because I never had any issues with my transplant. All at once I felt cured; I felt so much better instantaneously. I went to Germany five months later, and my relatives who didn’t think they were going to see me again went there. I went to Glacier National Park and went white water rafting and hiking. I went Florida on a cruise. I went to Colorado for skiing three weeks ago, which was the first time in ten years I could do it because of the elevation. And all these times I that flew it’s been without oxygen, which is cool. I went to Vegas last weekend for my birthday. It’s been so much better.
I was really sick when I first found out I needed a heart transplant. I was sick because my heart had caught a virus, and from the virus my heart swelled up and got too big for my body, so I needed a transplant. I felt different and weird after I got my transplant, because I had someone else’s heart in me. It was great when I got out of the hospital. I was excited, because I had been waiting for four months in the hospital. After my transplant, it really wasn’t different; I just felt completely the same. It was just that I couldn’t do things that I would usually do. I couldn’t play sports right away, and stuff like that. And I had to come back to the hospital once every week. But I actually liked it, because then I could get out of stuff. I also liked it because each time I’m here in the hospital I learn new stuff about medical things like meds, how things work, stuff like that. My friends always ask me if I feel any different, and if I can tell I have somebody else’s heart. And I always tell them, “No, I feel completely the same. I feel like nothing ever happened to me. Sometimes I forget I had a heart transplant unless I look and my stomach and see my scars.” When I first got my heart transplant, a lot of people started respecting me more, and some people stopped talking to me because of the way I looked from the Prednisone- I swelled up. But it’s fine- I don’t mind. I told basically the whole school.
At first, taking my meds was the hardest thing. Before my transplant I didn’t have to take any meds for any reason and it was kind of hard having to get used to taking them twice a day and for the rest of my life. Now I take anti-rejection meds so my heart won’t reject my body- immunosuppressant drugs. And blood thinners, blood pressure drugs. I also take prednisone, but it gives me a moon face. My advice for other people about transplant medications is to just to take your meds all the time and don’t mess up like I did. It’s been four years since I had my transplant- and throughout the years I’ve been running away and acting the fool. And when I would run away sometimes I would leave my meds at my mom’s house or wherever I was. I wasn’t thinking then, and wasn’t making the right choices. Now that I’m listed for a second transplant, I’m feeling different- I’m not scared about it or anything yet. If it’s something I need to survive, I might as well get it. I’m not scared or anything because I know what it’s like already. I hope everything goes well with this transplant. If you’re going to have a heart transplant, don’t be scared. Just be strong- it’s going to be okay. It will be all right. The Lord is with you.
After the operation they brought me to the Cardiac ICU, where I was taken care of very well. I was there for a few days, and every day my cardiologist would come see me to check on how I was feeling. Then they brought me to the regular hospital floor. I was one step away from going home. I’ve been taking lots of medications since my transplant. Right after the transplant, I was feeling pretty terrible. I had some tubes in my chest that would take all the extra fluid out from my body. I had the tubes in for about a week. I recovered fast- it was only 13 days before I went home. When I got home, it felt so good, but you wouldn’t believe the first part of the house I went to- I went straight to the refrigerator. Why, I don’t know. Afterwards, I walked around the rest of the house. Then, I got on the phone and called my boyfriend at the time, and told him to come over. When he came to my house, he was really happy to see that I was home. A lot of people didn’t even recognize me because I had lost a lot of weight. Throughout the days, I was getting a moon face because of my medication. Every week I had to go to the hospital for a check-up. Once things were looking better, my appointments were every other week. The appointments were to check my blood levels, do an echo and do a biopsy. When they would do a biopsy they would go through the right side of my neck, make a hole in the neck and take little pieces of my heart out, to make sure there was no rejection. When my heart had its first episode of rejection, I had to go back the next day for a three-day stay in Boston. For those three days they gave me steroids for the rejection. The name of the steroid was Prednisone. Prednisone is one of the meds I take daily, but in the hospital then gave it to me in IV form and at a higher dose. Days and months went by, and thanks to god everything was great. But the next year, the heart struck out again- there were more rejections. I was feeling short of breath, and I had to stay in the hospital for three days. After being hospitalized, everything was back to normal. For my yearly exams they look at my coronary arteries while doing a biopsy. Every time I go for an appointment I talk to my cardiologist and my nurse practitioner. They are the ones who tell me how the results are and if there are going to be any changes of meds. Throughout the two years there have been a lot of changes of meds, especially with rejections. It’s been three years since my transplant, and this is the third time that I have gotten an episode of rejection. This time I knew that something was wrong- in my lower chest I had a sharp pain, and I was short of breath and very tired. This time they did the same thing they always do- they kept me in the hospital but this time I was in the Cardiac ICU, that’s how bad it was. In the CICU they gave me a few different types of steroids through an IV. I was there for a few days- I really don’t know how many. Then I finally went to the regular floor, which is one step from home. But this time I was still on steroids, just not as many. Little by little, they took them away. Finally I received the news I was waiting for: I was going back home. But everything wasn’t back to normal- I have been having problems- I wasn’t taking my medications like I was supposed to and I was running away. In the end I got placed in the hospital because I wasn’t taking my meds and they were concerned. Ever since then I have been stable and trying to get out of this mess. I am going to my monthly appointments at the hospital and taking good care of myself. When I went to one of my appointments they had some heck of a news for me- they told me I may need another transplant within another year but if I don’t show them I can take good care of myself by taking my meds, eating well, getting good rest and being stable, they will not give me the other heart if I need it. If I show them I can be stable for 6 months they will put me on the transplant list. Ever since March I have been on the transplant list. From these experiences I have learned a lot. I learned things that neither adults nor children know. I learned all about cardiology and many things about different meds and what they are for. Most importantly, I learned that everything happens for a reason. I still don’t know what the reason is; I am pretty sure it is something good in the long run. I have been through more than most adults go through in a lifetime. Most importantly, there are people in my life who need and care about me.
I know that the day after the surgery my mother came to see me. I wasn’t able to talk to her because of the respiration tube that I had. I couldn’t even see her but I could hear the sound of her voice. It was good to know that she was there. Another patient who I had me at the hospital and become good friends with happened to be leaving the day after my transplant. He came to see me before he left. He brought me a teddy bear and stood by my side holding my hand and talking to me. I was still on a lot of medication but I knew that he was there and I remember talking to him. I don’t remember what we talked about. The next day I felt better. I was more aware of things. Everyone told me I was doing great. One night they ended up taking out the tube that I had in my mouth. From the tube my mouth was very dry. When they took it out all I was asking for was some water. The only thing the nurse would do was wet my mouth with a swab which to me was just torture. I wanted water and I wanted it now! But since they had just taken the tube out I had to wait a while to drink in order to make sure everything was going fine. After a while they gave me a nice ice-cold glass of ginger ale. I have to say, that was the best ginger ale I have ever had. Little by little I was getting better. They took out my chest tubes. I was recovering very fast, so everyone said. By this time I was already eating up a storm and drinking a lot. Five days after transplant I was up and out of the ICU. I was also already walking and everything. I felt like a new person. I had lots of energy. I can really feel the difference. I personally was and still am surprised I’ve had a third chance in life. After being on the floor a few days I started to get some kind of weird pain on my left side by my lungs. At first the pain was not as bad but the next thing you now I started crying because I couldn’t support the pain. They had tried to lay me on my left side to take a chest x-ray to see what was wrong but it hurt too much so I refused. They called the ICU so that they could bring me over because on that side they can give me stronger pain meds. They finally took an x-ray. They found out that I had extra fluid in my lung, which is not good. The pain kept getting stronger. They had to tap me. Tap is when they drain fluid from my lungs. When they drained them they actually ended up draining a lot but not all. I was still having lots of pain. A few days later I ended up having a biopsy and that ended up draining out some more. We all thought that was it and that there wasn’t going to be any fluid left but we were all wrong. I was back on the floor for a few days but I had to go back to the ICU because they were going to put in a chest tube and leave it in for a few days. The tube was very uncomfortable but it was worth it because getting tapped is not the best feeling in the world. Two days later I was back on the floor but I still had a chest tube. The next day they took it out. It was a big relief to have the tube out. Once I got it out I went straight to the shower. That’s always a big thing to me. Ever since I’ve been on the floor, I’m doing well in every way. I have been having visitors come to see me. Ever since the transplant I am diabetic. I’ve been taking lots of steroids, which have caused me to have high blood sugar. So all because of this I need to watch what I eat. At first it was hard but I am starting to get the hang of it. Now my sugar levels are a lot better. Since my transplant I’ve had about two biopsies. Health-wise, I am fine now. When I get out of here I want to do good for myself. Being in the hospital made me change a lot of things. While being in here I’ve been doing lots of thinking. The people here helped me in many ways. It might be hard to focus because I haven’t been out in the world for a while but I know I can do it. I have confidence in myself.
Basically, the tough part about my transplant was the recovery. After getting an organ, you’re very sore and worn out; it’s a big change. After two or three months of recovery, though, you feel like an average kid. You don’t have dialysis or food restrictions and you can drink anything- and as much of anything- you want. Kids say they hate school, but after you’ve been in my shoes, it’s a big relief to get back in with everyone- to be one of the crowd and be with regular people.
Now I’m basically a teenager; I’m out with my friends, I have my license, I’m driving, I’m going to parties, I have energy and I’m ready to graduate from school. I am no longer a hermit in my house without the energy to be a regular person. There are really no restrictions on what I can do. Contact sports are one thing that they might have a problem with, but there are always things I can do for that, like wearing a kidney protector in case I want to play any sports. You put it on over the area of where your kidney is. I was going to wear one when I was little and playing t-ball, but they decided I didn’t really need one.
If you get a transplant you can do more stuff. You feel better. Now I’m not on a diet and I can drink more stuff. I feel healthy.
When you first get out, you have to be really careful about being around other people because your immune system is not that great. I actually got the chicken pox, and had to come in and have it resolved. It takes a while for your immune system to get back up where you want it. Stay away from someone who has a cold or anything like that. Some people wear a mask over their mouth.
I would double over in pain, and throw up. Certain foods would irritate me, but I just figured it was acid reflux or something. It took a year and a half to figure out I was having gallbladder attacks. I’m not an easy case- I’m a complicated case, so I didn’t have normal gallbladder symptoms. I guess a lot of the transplant kids are having that issue, having their gallbladders out.
Since the transplant I look at life differently, because I had a second chance at life: being able to go to college and to be a normal kid who is out with his friends and has a girlfriend and the things in life that all kids want. I also feel I’m lucky to be alive and grateful to be alive. I am so proud to be able to say that I had a heart transplant because I am doing so well. I’m proud to show people that heart transplants do work, and to encourage organ donation and things like that. I’m just very lucky to be alive and able to participate in life just like anybody else.
The heart transplant was the easiest thing about my illness. Being sick was so terrible, and I felt so sick and almost died. It was so scary. Needing a ventricular assist device was so scary and difficult. Going through the procedure of the heart transplant was easy, because I just went in and came out and I felt so much better. So that was the easiest part of the whole journey.
Setting and Circumstances
Influence
Obstacles
Contributions/Accomplishments Significant Moments This is an autobiography written by an eleven year old who had a heart transplant when he was four. |
After Lung Transplant
After my Heart Transplant
Losing a Transplant
Setbacks
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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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