Thursday, July 12, 2012

In Touch

I love when people ask me questions about my heart transplant. I like that they are showing some interest in my life. I like that they are not being awkward about it. I just like to tell the story. It's a good tale.

The questions have evolved over the years though. At first they were mostly logistical. Why did your heart fail when you were only 14? (HCM) How are you now? (good) How did it work? (read the blog) Can you tell the difference? (yes this one is awkward) These days the questions have gotten more reflective and philosophical. Do you know the family? (no) Has it changed your life? (yes) How did you handle it? (just barely) What does it mean? (who knows) I think the change is due to people knowing that I can talk about it now. I have some distance and can reflect just a little.

Strangely, one of the more common questions I get after I tell people about my heart transplant these days (after we get past "really? Do you have a scar") is "Do you keep in touch with the doctors, nurses, and surgeons that saved you?" I don't particularly understand where this question comes from or what the right answer is. Should I? All of the other question I get completely. I'm obsessed with the donors and the difference between the hearts too. I am not really interested in the medical professionals I met as much as I should be.

I think you could somewhat tell by recent post that I am not super in touch. http://www.emilysatrium.org/2012/05/still-healthy.html I don't speak with any of the nurses or surgeons that took care of me while I was dying. only see consistently two of the doctors and Dr. Blume only sees me really because of the hospital. I think my distance from these people is because I didn't know them particuarly well to start. I was so lucky. I only spent eight days waiting in the hospital for my new heart. I set all kinds of Children's Hospital records for recovery speed. Maybe if I was less fortunate and spent more time dying then I would be more in touch, but I didn't.

The only doctor I still see socially is Dr. Martin Maron. He is the world specialist on Hypertrophic Cardiomyopothy and we had lunch last week. I know he wouldn't mind me telling you that we traumatized each other a little. I was getting sick so fast and he knew it was bad, but I was so positive and falsely secure that every time he tried to tell me/us it was and my heart was failing I was pretty much like "Are you sure‽ I feel good. Really" That's what it takes to stay in touch. You have to have something more than just the medicine. He saved me. Without his persistence about the seriousness of the situation I would definitely be dead. I can't explain the difference between that and a surgeon just doing their job well. It feels personal with him. He had to do something that was scary to help me and I had to really trust him.


You look at a doctor like the pediatrician that caught my heart murmur and she should have been a hero in the story. We should be in touch, but she gave us one bad piece of advice and it was over. All hero worship dies once somebody makes a single bad call. She said I should go see a surgeon instead of a specialist and she was wrong. I needed to meet Marty Maron. I have others to thank for that. He is the only doctor I am really in touch with. Now you know.

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