My Double Lung Transplant

Saturday, April 11, 2009


I'm so bored.

I'm so fucking sick of this lifestyle, of the constant repetetivness of my weekends...the sitting around, the reading, the boringness that encompasses it all. I am ready for a change. I just want my damn transplant already so i can feel better and get on with my life.

...But i'm so afraid.

I want this so bad, but i'm so acustomed to a life of nothing that i'm afraid of when i'll have a life of something. I'm so used to being the girl in the background, yearning to be the girl in the foreground, that when it comes to actions, I don't think i'd have the guts to do that. It's easy for me to remain in the shadows and watch everyone's lives goes on while mine is in slow mo. It sucks and i'm not ok with it, but there is nothing anyone can do to help me get out of this rut.

Unless they die - and that's not something anyone should ever wish.

Blah. I want to be better and feel better and live so bad, but am i ready for all the commitment that comes after? The testing, the potential but thankfully temporary move to TO....can i do that? I probably can, but god knows i hate Toronto. I do not, and am determined to not, have another summer where i loaf around and waste my time. I have spent 3 years like that b/c my lungs are slowly on their way to hell. Not again. Not this time. This summer i want to be a wild child and live my life....but then i come back to that same old tune that sings in my conscious: I am afraid.

I have to stop being afraid.

Boo fear. Boo lung disease and boo to uncertainty.

Boo everything.

Transplant: hurry the hell up!



Amy said...

I know exactly what you mean by being afraid.

I often wonder if I am satisfied with being where I am in my career because I can't really do much more. But if I get new lungs the possibilities are endless and then I CAN go farther...but do I really want to or am I using lung disease as an excuse to "fail" per-say.

The only way to conquer your fear is to face it head on! I hope you get the chance to this summer!!!! I live through you remember ;)

Anonymous said...

Hey girl! Last summer was in many ways the WORST summer of my life. Lung function around 25%, constant iv antibiotics, hauling around an oxygen tank everywhere. Fuck. Pretty rotten, eh?

BUT, in many ways I had the BEST summer of my life. I valued always the good days, and so never took them for granted. Sure, there were bad days, but I kept reminding myself that even on my BAD days I was still living in 2008, so far the most technically advanced tx care in history at this time...

I also leaned on family and friends a lot for physical support. I gave up a lot of control because of the disease. BUT, I also TOOK BACK control: I custom built saddle bags to hold my oxygen for gosh sakes! I might have been "dying" but I was doing it from the back of a horse.

I hope you can someway find a way to fill your time with things less tedious. Building a special oxygen pack into my saddle bag was outside the box enough to let me sort of do what i love.

As for coming to life post transplant? Well, yes, I guess I can't totally blame my lack of career on the CF anymore! And yes, that is frightening to think I'll hopefully get the chance to get out there and really work it! But also, exciting!

Keep your adorable chin up! YOU CAN DO IT! YES YES YES! (You're in my prayers often.)