Friday, November 20, 2009

We traveled to San Fran for the big appointment this last week and I’m not sure where to even begin to explain.

I didn’t sleep for days. I planned answers, prepared for questions, and readied backup plans. This might be one of those times when planning for the worst isn’t in my best interest. I laid awake I can’t begin to tell you how many night in the last 6 weeks mentally getting ready for this 3-4 hour appointment.

That was the fastest 40 minutes of my life. 20 minutes if that time was listening to the doctor dictate a letter to my other doctors. I’m a lovely patient perfectly suited to their program. Which means, yes, I’m in. No, I am not “listed” at this time. Which means I won’t be looking to cause any traffic accidents in the greater northern California area yet. Now we enter the evaluation/exclusion phase. I have about 40 tests to be run through. I will be poked, prodded, stuck and charted. All of that will give them a “number”. That number is my sick/healthy rating and gives me my place on the list. We might find that I’m just not sick enough yet, and we don’t find that likely.

So where does that leave this whole thing? I don’t know. I still don’t know how I feel about it. I really feel a lot like I’m just trading one problem for another. Is a possible 5 years really worth all this shit? Because look, the numbers aren’t great, 85% of patients are still alive after one year; only 51% are alive after 5 years. Yes those are averages, and averages include everyone with every disease to receive lungs, but it is what it is and those are the numbers. I am young, and as far as we know, totally healthy outside of having lungs that are steaming piles of shit. Everyone thinks I’ll go much farther than 5 years, but the reality is, 5 years may be it. Could I survive 5 years without the surgery? When is the timing right? Now, tomorrow, next week, next year?

It’s a ton to absorb. My other doctors are just happy that I’m plugged in. My PF test was up a little more, which means I’m up to 28% of normal. My lung volume should be 3.06, mine is .86. There is no doubt my numbers are beyond bad. Another spell like last January could easily mean life on a ventilator until lungs come up.

I did like the doctor I saw. He could have cared less about my time out of the “loop”, he didn’t care about my medications and felt they were all fine and working so why muck with it. All the time worrying was for nothing, which it totally to be expected. Part of me knew that, but you can’t help but be prepared, I’ve had it go the other way too. For every laid back easy doctor there are 5 hardnosed, by the book, black or white, diehards with no wiggle room. I’ve seen and been in front of the firing squad. This was not that.

So now we go from here. Where we go from here is a path I’m not sure of. But at least we’re moving forward.


Rootietoot said...

My philosphy is: expect the worst, then when it happens, you're prepared, and if it doesn't you're pleasantly surprised.

All the best with this, I can only have an inkling of what you're dealing with, but you'll be in my thoughts.

Anonymous said...

five years is a long time, would you rather leave this earth sooner? What a decision you and your loved ones have to make, our prayers and thoughts are with you.. I know you'll do the right thing for you, and that's what it's all about YOU!! and what you want to do for yourself, your son and family.. be nice if we could wave a magic wand wouldn't it..? what about more than 5 years, isn't that a possibility? I think it may be with your inner strength, didn't you say that once they told you you'd be lucky to reach 18? well ?? A friend