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Coping
I think faith was a really big thing for me- knowing that whoever was going to do a procedure knew what they were doing. With an illness, you should only be afraid when there’s no hope left- when there’s no other possibility. With me I had the possibility of a transplant, which I got and which worked for me fine. Try not to take things so hard. You may worry about small things, but things will go right.
For me, family was key; I’m extremely close to my family. I have two brothers and a sister and my parents, all very close to me. I had also been involved with the social worker before transplant, which I found extremely helpful. And I use a lot of hypnosis. I used it before surgery- I actually did a hypnosis suggestion going into anesthesia for my transplant- and I also found it helpful during recovery. I’ve done it for a lot of things, and the doctors said that they probably used between 40 and 50% less pain medication than they would have needed had I not used hypnosis. So I found the meditation helpful, I found family helpful, and I definitely think that you should get linked up beforehand with someone you trust for social work. I also think support groups can be wonderful, as is being able to call somebody up on the phone to talk.
I put my energy and thought into something else instead of dialysis. That is the best way to get through life. Don’t just think about dialysis- go through life having other things to go to, like soccer practice or something.
I think being a teenager is more stressful than having a kidney disease. Being a teenager and having dialysis is a lot tougher than having dialysis when you’re two years old. You’re not in school then; when school and social life are added, it gets stressful, because you want to balance everything. The only advice that I can give is that your health is more important. If you’re not feeling well, don’t push yourself to show up at a party because you want to have a social life. You should take care of yourself first and worry about that other stuff later.
When people called me on the weekends, wanting to do something, I would have to say, “Sorry, I have dialysis.” They wanted to go out to buffets, and I would have to say, “You know, I can’t really do that because I’m not supposed to have all of this food.” You get a lot of pressure, but you have to fight it. There were some kids that didn’t, and they had a worse time than I did. Follow everything that your doctors suggest. You can still have fun, just don’t go out every weekend and drink five liters of fluid while you’re on dialysis. Have that once a month or so. If kids are really your friends, they’ll understand and won’t tempt you to do that stuff. I had a couple of people who really helped me out with that.
I have been stressed because I’ve been waiting almost three and a half years. It’s definitely hard. I feel like I’ve watched a lot of my friends grow up while I’ve been stuck in a place that I can’t get out of. I’ve just had to wait. Hopefully it will happen soon. I’ve learned a lot about the risks of transplant that I didn’t know before, but still, there is really not much of a choice. Waiting is hard, but when you have really good friends and the support of your family, it helps. I’ve also found that my faith has been really important to me. Just trying to keep your life as normal as possible helps too. You can’t think, “Well, I’ll wait until later to do that,” because you don’t know when later will be.
The hospital is like my second home. It’s not that bad. We make a day out of coming in here. I don’t mind it at all. We make it a nice day by going out to lunch, and shopping if we have time. It’s a day I get off from school. If I’m in the hospital, I bring stuff from home or I call my friends, and my parents come in every night to visit. I know the nurses very well, because most of them have been there since my first transplant. It is like a second home because I know it so well. Yeah, some of the tests are bad, but I have my parents to support me. And you can really trust the nurses; they’re there to help you.
Initially, it was devastating. Just before I learned I had a heart condition, I was playing on a youth group basketball team, I enjoyed long bike rides, I went backpacking, and I was just getting into skiing. Within a few weeks I was told to minimize all physical activities, not to lift more than 20 pounds, and to plan on having a desk job for the rest of my life: not exactly the things a 15 year-old wants to hear. When I learned that I needed a heart transplant, it was a relief. While the idea of the surgery and recovery was scary, the long-term benefits were encouraging. The idea that I could work through a few months (or even years) of recovery in exchange for getting a "regular" life back was awesome. I had my whole life in front of me. A lifetime of restricted activities was much less appealing than transplant surgery.
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Faith
Supports
Something Else
A Relief
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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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