Friday, October 9, 2009

2 new lungs, please

Well, ok, since I'm frighteningly good at saying something significant, and then, ohhh, you know, totally dropping the ball, like I did over at LJ, I thought I should pick up the pieces here and fill in the blanks.

I have my appointment for a transplant consultation. It's Nov. the 19th, in case you are the praying or sending good karma type. This is where they decide if they'll accept me into their program at UCSF. This can go several ways:

A) You're a total fuck up and regardless of your lung function we don't feel your a candidate for transplant. The fact that I spent 10 years out of the "loop" could stick me here.
B) You lung function is low enough to qualify you, but your general health and mobility makes us choose to wait. Come check in every 3 months and we'll list you at a later date. You know, possible right before you die. Oh, and fuck you for being active and stubborn.
C) Holy shit batman how are you creeping along in life? We need to list you right away. Which, Dr Blue Eyes says, based solely on numbers is where he'd put me. It's that meet me, seeing me in person factor that screws me every time. See last line of B.

If A happens, well I don't know where to go after that, but I'm sure Dr. Blue Eyes will have a suggestion. Rest assured I will cry, bitch, and probably scream and I would recommend avoiding me like the fucking plague for awhile.
If it's choice B, well I won't be ecstatic but at least we're on the radar and if something takes a turn for the worse they can list me quickly.
If it's C then the next couple months will be a blur. In two to 3 weeks they will call me and I'll have to do a bunch of lab work and testing. These are exclusion tests. If I fail, I'm excluded. They will be checking for other diseases that would make transplant pointless. After that it's waiting time. I can't think of anything that will exclude me, unless I'm harboring cancer or some damn thing, in which case, shoot me now.

So how do I feel about all this, you ask. Lets see.....


On one hand, won't it be AWESOME to get back to the things I've been "modifying" out of my life for 2 years!
On the other hand, what really and truly scares me about the whole process; once we get past this "rejection based on human perception", because I hate that, black or white baby, period; is the surgery itself. I'm totally scared shitless they will kill me on the table. Because then all of this is totally pointless. TOTALLY. This is the part that makes me go WHOA. Right now, I may not have the best/fullest life, but umm HEY I"M ALIVE. But the other side of that is, if they don't kill me, and I come out the other side, I will have 6-10-15 years of normal living. Where normal means I don't have to fight to not only breath in but out. As Dr. Blue Eyes has pointed out, I have no idea how hard I breath. Normal people don't DO that, he tells me. To which I tell him no one has ever accused me of being normal.

Yeah there will be some major drugs I'll have to take.
But in number it will be 1% of the drugs I'm taking now. The time factored in will be minuscule compared to the hour/s it takes me to be ready to leave the house now.
Go hiking, yep. Camping, yep. Goat shows/chores, alone even, yep. Stay the night somewhere without lugging 2 machines, 10 drugs, 2 back up oxygen sources..... holy crap, yep! Not being a never ending burden on my friends and family, yep!

Is this the end all cure all? Well for my CF it is. We don't feel I have the intestinal issues, which means, for now, I'll be CF free and it WILL NOT come back into the new lungs. However, Out with CF, In with anti-rejection medication death. Right. Now I die from the transplant.

So right now I just try to get "in". In the program. On the list.


Rootietoot said...

Best wishes for whatever is the right and proper outcome. That's all I have to say...

Anonymous said...

Everyone on here will pray for you but I feel very confident you'll come out just fine because you deserve this..