My Double Lung Transplant

Thursday, May 13, 2010

You never know...

They say when you reach transplant you trade one disease for another, one set of complications for another, one life for another, and that things can change in an instant.

Lately, this couldn't prove to be more true.

For myself, for my friends, for everything.

Got my bronch results back earlier this week. Mild rejection. Wasn't what i wanted to hear at all, but i know it could be worse. My co-ordinator didn't seem overly concerned, even referring to it as 'a very small amount' of rejection, and that my prednisone was in fact going down. I am now on 7.5mg and 5mg alternately. From my understanding, mild rejection (also known as Grade A) is just some inflammation that goes away on its own. I don't have a temp, and my PFTs are stable in the 90's. So i guess I'm good. But still, it sucks, and it's scary.

Jason, my TGH friend, passed away a year ago today. Rejection again. He had just turned 23.

And now there's my dear Meggs, my fellow sister in Bronchiectasis, who's fighting in an ICU with either RSV or rejection. She's on a vent, and is unstable, and things don't look good.

And I am gutted.

It just shows how quickly your status post tx can change really. And it's scary

There's so much you have to do to monitor yourself post tx. Check your temp everyday, check your PFTs everyday. If there's 10% decrease in function over a course of 2 days it could mean rejection, infection, or that you're going straight to hell, and you must ring up your coordinator immediately and get sorted out. Because if you don't, you might just die.


That's scary. And i'm scared that I won't know how to identify these things if they happen to me. I'm afraid if it ever happens that it will happen gradually like when i first got sick, and that i won't even notice it.

Nothing is certain in this post-tx realm. The highs are high, and the lows are low.

And I am scared.

There is so much that I am afraid of. I want to live big, but I don't know how. I don't know how to branch out and do it since i lived in a cage for so long and had to back out and bow down. I know it takes time...and hopefully in time, I can be crazy again without being afraid. Afraid of what? I dunno...Maybe i'm just childish.

Maybe i don't know myself...

But I do....I just need to step up, say fuck it all, and be proactive.

But it takes time.

And I am scared.

(and my dog died a week ago:()


Kira said...

Its pretty hard but you get there. While my health story doesn't involve a transplant I was completely bed ridden until I got my pain pump so I can defiantly appreciate going from being out of life to now being in. Also the worry about such things I worry about whether things are my pump not working and delivering a lethal amount of morphine and many other things. I wouldn't know either until much to late if something bad was happening.

Its been almost two years since my pump and I am still working on getting back into life.
Sending many hugs.

Megan said...

I'm scared of different stuff, considering I'm on the opposite side of the tx game, but yeah, fucking terrified. Thinking a lot of Meggs and hoping she can get the hell better soon! Thinking of you too, things HAVE to be ok. I say so. Xx

Matt Todd said...

I think you have every right to be scared. There is alot of variables in play that can cause problems. But also you're doing so well and you're doing things that you were previously unable to do. So atleast you're in a good spot now. I guess its a cliche, but just live for the moment. Dont worry too much about rejection, RSV, etc. But at the same time for forget to keep a close eye on things. The life that we lead is a delicate balancing act.

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