Wednesday, October 14, 2009

Home Again

Well, I finally got to come home. Doctor says the tear in my lungs seems to have sealed up. I don't have that bubble wrap feeling under my skin anymore. And I can take more than five steps without gasping for air.

I am on a bunch of meds for now though. Taking an antifungal for a fungus infection in my lungs, taking prednisone to reduce inflammation caused by the fungus. Taking Bactrim for a staph infection also in my lungs. And taking an IV med (merripenem) for a bacterial infection that is also in my lungs. So I got hit really hard this time.

It's been stormy and rainy since I got home, so that means that I have to follow my doctor's orders to stay home and rest for three days. I think he planned this. He was actually considering letting me go last Friday but he said he knew that the moment I was released I was going to slow down. So he kept me an extra three days just to be safe.

My doctor is actually a pretty cool guy. He knows his patients habits and arranges our medications accordingly. He also explains everything and will even go into the science behind it. At the hospital, he'll come and check you out, let you know what your test results are, and if he's ordered more tests. All this while casually sitting in a chair like he's just visiting. And to top it off, he listens. He doesn't pretend to have all the answers. If I tell him a new symptom that baffles him he makes a point to get to the bottom of it. And he will tell you if he doesn't know. If more doctors were like him, patients would be way more satisfied with their care.

So my doctor sent me home with a bunch of meds and some tough stuff to consider. With CF you usually end up hitting a point where no matter how much work you do it's still not enough and that's when the word "transplant" is brought up. Unfortunately, I guess I'm at that point. I've been opperating at about 20% lung function for a year and this tear may be the first of many. I knew that at some point I would have to consider a transplant, but I had hoped I'd be closer to 40 before that. I also hoped that medicine would advance enough so that I could just grow a new set of lungs in a lab instead of waiting for a donor. But it looks like I might not get to.

I'm not debating whether or not to get one. I always knew that if the time came I would go for it. I mean if it's a success, I get to do things that I can only dream of right now. Shoot as soon as I get the okay, I'm going SCUBA diving. What's hard to swallow is the price tag and how much of your life you have to put on hold until then. In 2008 a lung transplant cost over $600,000. That includes doctor appointments, rehab, surgery, and anti-rejection drugs. That does not include room and board and transportation till you receive the okay to go back to your normal life.

For me the nearest lung transplant center is Stanford. So that would mean after the transplant, I would have to live near the center for at least four months. And because you only get a 4-6 hour window when an organ becomes available, I would have to figure out how to get there in a moments notice if I choose to stay in my hometown pre-transplant. So my life would literally be put on hold.

Another thing is that a transplant means no kids. I always figured that some day I'd meet the right guy and start a family. If I go through with the transplant, that nixes out having children. Anti-rejection drugs are too potent and dangerous for a child. I know that there's adoption or surrogacy, but so far every guy I've known has been dead set against those options.

Seriously, though. It's the cost that's holding me back. Insurance may pay a portion but not the whole thing. Which means I have to find a way to raise the rest, while trying to stay healthy enough for surgery, and finish school.

I also find this kind of ironic. For a while I had figured that once I was done with school and had a real job, I would start putting money aside to start a foundation. I wanted it to be able to provide funding to CF patients in need of transplants. Basically, the foundation would cover whatever the insurance didn't. I figured that with the stress of finances out of the way a person could focus on just the surgery. Because with CF, stress can make things worse. So if you're stressed out about paying for a transplant, staying healthy long enough for the transplant, and the transplant itself, it can really way you down. I had been working on this idea for a couple of years, I just never expected this to all happen.

Anyways, Life is full of adventures and it looks like I might be headed on another one. We'll see how this goes.