Are You Stupid Or Something?

Why, yes. Yes I am. I should have (in the words of one person) "just gotten a heart transplant a long time ago," so that I wouldn't have had to go through all the problems of the last 12 years. Apparently, this person thinks life is like playing the original Doom. Shot in the face multiple times with a flak cannon? NO PROBLEM. Run across this little white first aid box and ta-da! All your ailments are magically healed.

In this magic world, apparently anyone with chest pain can simply walk into a local clinic and say, "I'd like a heart transplant, please." A nurse will then usher them into a show room where they can pick out the heart of their choice, have it implanted (BY MAGIC), go home, take some pills, and compete in a bike marathon the following day.

However, in the real world, people are very fond of their own hearts, and also the hearts of their loved ones, even after they are recently deceased. You'd think it goes without saying, but I've actually had to remind a lot of people that (hang on for this shocker): DONOR HEARTS COME FROM RECENTLY DEAD PEOPLE. Unless Wal-Mart is selling them now, which frankly would not surprise me. Think about the way this affects those who need that donor heart for a moment.

*There is a severe shortage of donor hearts compared to those who need new hearts

*Hearts are not universal because you can only receive a heart that is your size, works with your blood type, etc. Since there's no Heart Quickie-Mart, you have to wait for this exact type of heart to become available. Again, let me emphasize - hearts only come from recently dead people. There is no heart bank, no adoption center, no vending machine.

*Because younger hearts tend to be more healthy and last longer after transplanted (all other things being equal), the recipient holds out morbid hope that they will receive the heart of an 18 year old who died in a motorcycle accident, rather than that of a 60 year old who died from eating too many potato chips. Because when you receive a new heart, you also receive any problems, genetic or otherwise, that come with it. In a future post, I'll explore the psychological ramifications of knowing that someone's going to die, preferably a young healthy someone, in order for me to live. I haven't quite worked it out yet but so far it involves a lot of uncontrolled sobbing and a bit too much red wine from time to time.

*Since they are in such high demand, there is an extremely strict, national criteria that must be met before an individual is considered a candidate for a new heart. This not only involves the urgency and severity of your medical condition, but your dental health, financial ability to afford post-transplant meds, psychological state (I know, I am SO screwed), your relationship with your family or support system, diet, motivation to survive, and on and on and on. Donor hearts are precious, both to the medical community and the family of the donor. Everyone involved wants to be as confident as possible that it's not being gifted to a suicidal meth addict who won't take the meds - because if that guy doesn't take it seriously and the transplant fails, the heart is wasted. Which means someone else who would have cherished it probably died while waiting for a new heart.

I could go on and on. There is an organization called UNOS that transplant centers use to sort through all this. One of the reasons we want to be listed at Tufts and Mass General in Boston is because the cardiology teams there have experience moving  HCM patients through this battery of tests, even though we don't meet the traditional criteria set forth to receive a new heart. The guidelines are built for people with "normal" heart failure, and mine is anything but normal.

When my time does come, if I make it to the top of the list (which is a whole 'nother post, because the list itself is necessarily complicated), it won't be by appointment. It will be after someone else's unexpected death, and rushing to the hospital if the heart is the right "fit." This scenario will repeat itself possibly a dozen times because when you're second or third on the list, you're called to the hospital just in case the person/people above you on the list can't receive the heart for whatever reason this time. So you leave with nothing except crushed hope and the prospect of trying to survive until the next time. See why they do a psych exam at the front end?

The other reason we've not rushed into this just yet is because when I do get listed, my problem isn't nearly as advanced or severe as many other people on the list. My condition also may not change for some time (who knows?). So likely, I will float at the bottom of the list until I worsen, then I will move up. Obviously, the transplant team nor UNOS is going to allow someone to be transplanted who doesn't need to be yet. The demand is too great. The tricky part is being just sick enough to be considered urgent, but not so sick that you can't hold out until the right donor heart "becomes available." It's a bit like Shuffleboard, except the puck is your life.

So that's the "before." Next time we'll discuss "after," the grim reaper, and Minnie Driver.