I'm sure that a lot of things occurred on Monday, March 2, 2009, but the one that mattered most to me was being told that I suffered from Aortic Insufficiency -- a leaky heart valve. And if I didn't get it fixed, I would be dead within 2 - 5 years. What the fuck do you do with information like that?
I felt as if I was given a death sentence with a possibility for parole. I shouldn't have been by myself hearing this news. I certainly shouldn't have been driving a car. But I was, and I did. For some reason, I sent my roommate Lisa a text, informing her that I needed open heart surgery. I can only imagine what receiving that text was like. What an asshole. Then, I did the only thing that I could think to do -- call Carol. Although we had ended our relationship months prior, and hadn't spoken since December, I didn't know who else to call. And I didn't want to see anyone else. I don't really remember what we said, although I do remember calling my Mom. And I do remember crying a lot. Then, I left for Frisco.
Now, I can't stress this enough -- DO NOT, EVER, let someone drive who has just learned this type of news. It's hard to drive through tears, and it's hard to not want to jerk the wheel to the left, and crash your car into a fucking bridge abutment. I know that this seems ridiculous, but when you don't know what to expect, your mind takes you to a deep, dark place, and assumes the worst. Why would I want to live if I can't Mountain Bike? Road Ride? Ski? Hike? Backpack? Run? I have lived a lot of my life near my aerobic threshold. This is who I am, or I thought, who I was.
Aortic Insufficiency is when your heart valve doesn't seal properly and blood leaks back into the Aorta. There are a few reasons for this, but in my case, it's due to having a bicuspid valve when I should have (like most of you do) a tricuspid. This accounted for the rapid heart rate that I had been experiencing for the past several months. This accounted for the lack of fitness that I was feeling. And this accounted for the insomnia. Luckily, due to my persistence, I had discovered this before any irreparable damage had occurred.
Aortic Insufficiency reveals itself over time. It's a problem that gets progressively worse until you begin showing symptoms...shortness of breath, rapid heart rate, etc. And, unfortunately there isn't anything you can do except get your heart valve replaced. From what I understand, the most common procedure goes something like this (and I'll know more about this later, I'm sure)...a team of surgeons crack through your sternum, yank out the heart, cool it down (so they can work on it), and replace the bad valve. Then, they re-install the whole mess and staple you back together. During this time, I'm placed on a heart/lung machine to keep me alive. It takes anywhere from 45 minutes to a couple of hours, and it's one of the most commonly performed heart surgeries. One of the doctors I spoke with had done 1,500 open heart surgeries.
Valves: Unfortunately, or fortunately, there are decisions to be made when getting this type of surgery. The biggest is choosing the type of valve you want to get installed. And, according to Dr. Stanton, it's not what's good about them that you need to think about, it's what sucks about them. Here are the choices:
- mechanical -- these are made out of plastic, titanium and other high tech materials. They will last for 40+ years, and you'll never need to get this valve replaced. Unfortunately, with a mechanical valve, you need to be on cumiden, a blood thinner. Otherwise, clots will form on the valve, and you can/will stroke out. Living on a blood thinner isn't for me. For reasons that I won't go into now, I just don't think that this is a good option.
- tissue (pig) -- no blood thinner needed. But, this valve will wear out, and you will need to get another surgery down the road. The lifespan varies, but you can expect a 50% failure rate after 10 years. Some last as long as 18 years, and some fail after 5 years.
- human -- First of all, no, I don't need to wait for someone to drop dead. But it does take a week or so to get one of these delivered. The upside with the human is that it lasts much longer, and has a better flow (good for athletes). This valve can last as long as 25 years (in fact, they don't even have data for that lengh of time yet). But, the downside is this...when it does fail, and it will, the next surgery is (as Dr. Geuber put it) "a ball buster." AND, since the second surgery is so difficult, they will only install a mechanical valve. So, blood thinners. The failure rate is 10% after 10 years -- but they have failed in as few as 7 years.
So, these are my options. At this point, I think that I'm leaning toward a human valve for the durability and blood flow. I have met with two cardiothorasic surgeons, and would like to talk with at least one more. But, the bottom line is that I will need to get this surgery, and probably the sooner the better.
Physical Activity: I'm still skiing and riding, and I'm still hiking. I've received some conflicting info on this, but in general, it's ok if I'm active. One of my doctors said not to get my heart rate above 130 bpm, and the others said that as long as I feel comfortable, I'm probably ok. One doctor said that I can work out, but he didn't know why I would...I'm not going to be able to get "fit." What I guess he doesn't understand is that if I can't be outside and active, I'd surely put a bullet in my head, and the heart surgery would be a moot point.
Next Steps: I have to say that it's very hard to want to schedule this procedure. To set a date for surgery isn't anything that I want to do. But, I know that I don't have a choice, so I'm slowly coming to terms with that. Luckily I have insurance.
I have an appointment with my regular doctor on Monday. And although I don't know what I'll find out, but I think that this thing will occur sooner than later.
Friends: When something like this happens to you, you really learn about what's important, and who you can count on. Simple things like a phone call or a card take on meaning that I never understood before. Having people around who care about you is of paramount importance, and I appreciate all of you who have called or emailed. I really can't thank you enough.
I met with my primary care doctor today and he's all over my ass about scheduling this surgery - AND he won't prescribe me any Xanax. Which I guess is actually a good thing considering my highly addictive personality. The fewer pharmacuticals I have access to, the better. I'm pretty sure that if I'd ever tried heroin I'd be living in a cardboard box, selling myself for my daily fix.
A lot of people ask me how I'm doing...I'm freaked out, scared, sad, pissed and depressed. I know that after this operation is over, and after the 6 - 8 week (really painful and shitty) recovery, I may believe that I'm lucky. I know that there are a lot worse things that could happen to me. I know that a lot of people have way more horrible issues to deal with than this, and I know that this may not be the worst thing that happens to me in my life. And I realize that I'm lucky to have discovered this now, before any major damage was done. But, at this point, it's all small consolation. Believe me, I'd rather not be dealing with this at all.
