One From the Heart
-- Charlie D.’s Story

Adult Heart Transplant Recipient

Early in 1995, Charlie D. began the long and stressful wait for a new heart. After a year and a half, his health had deteriorated to the point that he required hospitalization -- and he continued to wait. Finally, in October 1996, after 100 days in the hospital, Charlie received his new heart. Six days later, he went home. Here is his story, in his own words.
After the agony of waiting for a year and a half, it was a piece of cake once I got the heart. I was home in six days. After going home, I was put into a quick paced physical therapy program. By January 1997, I felt ready to go back to work part time, but my doctors and therapists were very conservative in the approach we took, and I didn’t actually begin working until August 1.

I’d been an organ donor for years, not knowing that one day I’d be the one receiving an organ. When my daughter was in high school, she signed the whole family up as organ donors. The truth is, the reason I had to wait so long for a heart was due to the unavailability of organs. In fact, there was about a month and a half at the transplant center where no transplants were performed at all simply because of the lack of donors. Of course, there were plenty of recipients waiting to receive hearts.

Now, I’ve got this 20-year-old heart with this 59-year-old body. I’m trying to figure out a way to average that -- I think I’m really about 39 years old. This heart is unbelievable. It’s like I’ve got a Lamborghini engine in a Model T Ford. We’re hauling ass down the highway, but parts keep falling off. We’re trying to replace them with racing tires and things like that. But I feel marvelous, I really do.

My insurance company was unbelievably great. I don’t think I’d have ever made it through this without them. They were in touch with me constantly, talking me through every phase. I didn’t have to worry about the financial side at all. It seemed like I was approved for my transplant in a matter of hours.

My case manager was permanently attached to me as my liaison person, and she took care of all my fears and anxieties about what was or wasn’t going to be covered. She was great. Even before I went into the hospital, she called me every week or so, just to touch base.

This experience taught me that I would never, ever consider anything other than an HMO. All my medications are covered. Everything I’ve needed -- physical therapy, things of that nature -- there’s never been a question about whether my insurance plan was going to cover it. The doctor just requested the referral, and I’ve never been turned down for anything.

I have a routine seven days a week. So many pills in the morning and so many pills in the evening -- a lot of different medications to prevent rejection and also to keep me from getting an infection that could attack the heart. At one point, I took them four times a day; now I’m down to two times a day. I’ve changed my diet and exercise routine. I drink decaf coffee or caffeine-free diet coke. I have a virtually low, low fat diet. I exercise at least four times a week.

I hope I made those quality life changes. I don’t know how much longer I’m going to be here, so I want to try and get as much done as possible before I go. I believe that people who go through this kind of experience have a better understanding of what can quickly be taken away from you. I’m torn between knowing I shouldn’t try to do too much for my own health and the sanity of my family. I try to walk somewhere in the middle.

I guess I don’t take myself as seriously as I did before. People tell me I’m more laid back and easier going -- I hope I am, anyway. One thing I missed terribly when I was in the hospital was being able to sit outside. I take advantage of my deck a lot more than I used to. Before, I didn’t even know I had one.

I feel fantastic.