GenY to the Xpower


patients like me by Valerie Hoven
March 12, 2010, 6:26 am
Filed under: Life | Tags: ,

Patientslikeme.com. I love it.  There is a new group just for organ transplant patients. It’s just a beta group, but we already have 400+ patients in it, and a fair amount of them are heart. I already started conversations with a handful of them. It’s so cool to meet patients like me! First, these patients know social networking, which means (for the most part, I’m stereotyping here) they are also young like me. It’s nice to talk to other people post-transplant who aren’t sixty-years-old. (Of course I like talking to anyone of any age, but it’s refreshing to meet people like me, too.)

Another thing I noticed, is that one patient and I started messaging back and forth and our convos mainly focused on survival rates. Yes, we want to talk about how long are we going to live. That is the giant elephant in the room for me when my transplant is brought up with my parents or even my doctor.

When I go to heart transplant support group (yes, we have a support group, but it’s really just a dinner with a doctor speaker), I am by far the youngest one there. And everyone there wants to tell their “story.” They say how proud they are to watch their grandchildren grow up. Hey, I still need to live long enough to have grandkids, OK! And I do not want another transplant either, which happens to some patients.

I pointed out to one of my new connections on patientslikeme that we never asked each other “Did you notice anything different after transplant? Like, did you adopt any of your donor’s characteristics?” I don’t know why I hate that question, but I do. Maybe it’s because I didn’t notice anything new characteristics other than I’m super healthy and that’s all I care about! Who cares that I went from loving milk to just liking it after the surgery.

Other questions I got that I had trouble answering:
How is the donor now?
Was the donor dead?
Did the heart come from a cadaver?

Other than those crazy awkward questions, generally I don’t like answering any questions about the donor. I owe that person and that family more than they will know. And that’s just it. They will never know. Yes, I have written them thank you notes (at least three), but that family didn’t write back. I am not upset about it.

One mother of a donor said that she can only talk about her son (who died and she donated his organs) in a scientific way. She can talk about the accident, the hospital, the decision to donate, meeting the recipients, etc., but she cannot talk about her son as a person. I feel that way about my donor. She was 14-years-old, 120 lbs, from out of town. She died on Father’s Day. And every holiday I think that a father lost his daughter. My father is the most important person in my life, and I hurt to think that another father lost his best friend 11 years ago. So maybe if I just think that she was 14-years-old and 120 pounds from out of town, then it will all be OK. (Occasionally I like to think she was a fun teen and that she would have approved of all my decisions in life so far :))

Realize that I never, ever, say that moving on is “accepting” or “getting over” death. My mom died, and I’ll never get over it or accept it. Life is unfair, but I moved on. In a strange way, I think I got a heart quickly and about as effortlessly as possible because I lost my mother the year before and karma said “enough is enough.”

I also got a replacement mother (who may or may not be reading this, so I have to put her in here just in case ;)) who is working out just fine. She is helping me clean my apartment on Saturday! How sweet is that? One friend of mine said, “what a nice mommy.”

I am very lucky 🙂