Family

Supports
Deal
Living Donation
My Mom
Had to Grow Up
Most Stressful Part
Siblings

heart        kidney        liver        lung

Supports

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.

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Deal

Having my mom as my donor actually brought us together a little bit more. But I have to clean my room because it’s a deal that we made: she gave me my kidney, so I have to keep my room clean.

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Living Donation

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.

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My Mom

My mom is really the person who’s been there with me from the beginning- she’s always been there giving me comfort and helping me figure out questions and things that are going on. And I think I really needed strength because I had never had something harder than a transplant.

My mom is a single parent with three kids. She worked at night, because it paid more money for all of the hospital bills. It’s not like going through a transplant will just affect you- everyone is affected. I remember the day of the transplant my mom had to call her work, saying she was going to be absent for the day. My sister was going to have to baby-sit my brother while she was at the hospital, so a lot of plans were cancelled. For my mom it was hard, because she was by herself, and when she came to the hospital a lot of people had someone else with them, but there were times when she didn’t have family for extra comfort or someone to talk to. But she’s always been there for me.

I wish there was something I could do for my mom. I wish I could give her a vacation to someplace warm, because I feel like she’s gone through so much, not just with me but with her own- whatever problems she might be having besides me being in the hospital and worrying about how I’m going to be. I would like to tell my mom to see Florida. I would really like it for her, but I can’t really just say, “Take a vacation,” because most of the vacation days she had she had to use to come in for my doctors’ appointments.

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Had to Grow Up

My sister had just turned 16 when I got sick, and she needed to learn to mature a lot. Some things she knew how to do already but she really needed to get her act together to learn how to do all the regular household work that had to get done- washing dishes, washing clothes, and all that. Because it was my brother, my mom and her, and all of a sudden my mom had to be with me and she was in charge. So she had to grow up. And she had to understand that I was sick and I wasn’t going to be there either- she needed to help take care of me. That’s how it affected my brother and my sister- just that they had to grow up to be more mature and to understand why these things were going on and that this had to be done. I kind of feel guilty, because a lot of my sister’s “wild time” was lost.

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Most Stressful Part

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.”

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Siblings

My siblings are really supportive. I probably annoy them to death by asking, “Will you get me this?” and, “Will you get me that?” because I don’t like running up stairs and stuff. But they’re really good about it, and are always trying to help me get through stuff. There is always the tension of, “She gets this attention,” but I think that even if there weren’t the illness, there would be tension about other things. So it’s affected us, but it hasn’t ruined us.

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