But it's just that - a flick. It's not true. Neither is ER, Grey's Anatomy, House, or the dozens of other movies and tv shows that treat heart transplants like a magic bullet or one of those healing stations in Half Life. Heart transplants are much, much more complicated. Since the entertainment industry always gives you the best case scenario, I feel obligated to give you the worst. Because I'm like that. I'm a giver.
Since being told I needed one in Boston almost 2 years ago, I've seen a few other doctors, some of them heart doctors. When I explain my diagnosis to them, they typically put on their grim reaper outfit and start telling me all the horrible things that go wrong with heart transplants. They actually treat me as if the transplant were MY idea, and it's their job to talk me out of it. This is mostly because people in the medical field know the truth - a heart transplant is an incredible, life-saving miracle that is almost too good to be true. But they know that many times it doesn't go like that. It's easy to look up "heart transplant" on wikipedia for fairly accurate information, but here's a quick run-down of the problems with the "magic bullet" theory:
*Good matches are based entirely on chance. A ideal organ would be one that's the same size as my current heart. There are other criteria that it would meet (obviously - blood type, age, gender, etc.). But at the end of the day, you get the heart that's closest to a match. If the match isn't very good, it can cause all types of problems, either sooner or later. But beggars can't be choosers, even beggars who need a $787,700 procedure (no, I'm not joking).
*Although they've gotten better in recent years, transplant patients have to take massive amounts of immuno-suppressant drugs for the rest of their lives. As in - forever. It's very confusing for your body because it's just trying to do its job and reject the foreign tissue that has suddenly appeared in your chest cavity. The meds can make you really, really sick. This is HUGE reason why pre-transplant psych-evaluations are important. Apparently, these drugs can make you feel even worse than you did before the transplant, and there have been problems with people simply opting to not take them and just die, rather than continue feeling so sick. You can imagine the expense of such drugs as well, being as the pharmaceutical companies hike the price exponentially for them. It's part of their You Have To Pay What We Ask Or Die Ha Ha Ha Sucks To Be You program.
*From Wikipedia and the American Heart Association - survival rates for heart transplant patients:
- 1 year : 88.0% (males), 86.2% (females)
- 3 years: 79.3% (males), 77.2% (females)
- 5 years: 73.1% (males), 69.0% (females)
Those are arguably good expectations for such a radical procedure, and the fact that you would die without it. The percentages start to decrease as the years increase. It looks like average life expectancy at this moment is somewhere around 15 years, but this is all highly dependent on your individual circumstance. In my case, even 15 years isn't very long when you consider Richard is 10 and Brennan is 6. At best, it would put me approaching death during their college years, possibly when they're getting married and having kids. This means I'm likely to miss my chance at being a grumpy old dude who yells at kids to pull their pants up, so I've gone ahead and started doing that now. It's better than nothing, but even Dr. Maron tells most otherwise healthy people my age to expect 5-7 years. Which brings me to the next obvious point:
*Re-transplantation. Once the first transplanted heart begins to fail, it is technically possible to be transplanted a second time. The problems with this are numerous as well. The Immuno drugs are extremely hard on the kidneys and liver, though that may change over time. Any other medical problem or illnesses can make you ineligible as a transplant candidate.
*Risks of infection, food-borne, air-borne, or otherwise are very, very high - because you're taking drugs to suppress your immune system, right? So you have to remain very isolated for quite a while afterwards. Most patients have at least one episode in which the body tries to reject the new heart and lands you in the hospital. It's not uncommon to be hospitalized several times due to rejection.
See? It's all unicorns and lollipops here at News of My Demise. There's other stuff I'm forgetting but like I said - this is the stuff you never hear. And it's why I get a little irritated at the way movies over-simplify the whole thing. Despite all the crap that can go wrong, I'm counting on things going well, on the fact that I've got a lot of motivation to survive, the fact that I'm young and otherwise healthy, and the fact that I'm going to be treated by the best doctors in the country.
Hopefully this explains why I want to wait as long as possible to have a transplant. Dr. Maran says, "It's always better to keep your own heart for as long as possible. After all, it's your heart." But waiting too long is an obvious problem as well.
Now, I know this all sounds doom and gloom, but I don't feel that way at all. I did at first, and I go through little periods of panic from time to time. But think of the big picture. How amazing is it that something like this is even possible to begin with? That the technology improves every year? When I asked one of the transplant docs about re-transplantation, he waved the idea off and said, "Oh, by that time we'll be using completely artificial hearts. No problem," as if this was a no-brainer. Who knows how long that will be? 5 years? 10?
I'm not afraid of being sick either - I've become an expert at it. I feel sick right now, and you couldn't even tell, could you? HA! See, that's how good I am. Being sick is the part I know I can do. I sat through Transformers 3 and once watched an entire half episode of Dancing With The Stars. I can do this. It's the not knowing that drives me crazy. How's it all going to turn out? What percentage of this, that, or the other am I going to fall in this time? I like to make plans and we simply can't. So we prepare for eventualities, try to make the best guesses we can, and go on with life.
When it's all over, maybe I'll get to meet David Duchovny or better yet, Minnie Driver. I'd like to buy her a bacon double-cheeseburger.
When it's all over, maybe I'll get to meet David Duchovny or better yet, Minnie Driver. I'd like to buy her a bacon double-cheeseburger.
I prefer rainbows and butterflies, but unicorns and lollipops work, too. Keep on hanging in there. I can only imagine, and not even that well, what thinking about all this is like. I've seen so many patients give up with FAR less than you are dealing with. I need you to come give a seminar.
ReplyDeleteWhoa. Heavy stuff. I have to say, though, that I think I had heard almost everything in this post from you and Christie as we've talked so much this past year -- and that's pretty great (not the miserable aspect of it all, just that we talk so much). So glad to have you in our lives and hope to have you sticking around healthily and happily in our lives for many, MANY years to come.
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