My Double Lung Transplant

Thursday, June 12, 2008

The long pre-tx journey

Tonight i'm going out for drinks with the girlies. We're not going to a bar, just a restaurant for some girly drinks and some snacks. The tx center always tells me that being listed does not mean i have to put my life on hold, but i'm sorry...it kind of is. Seeing as i'm physically not able enough to go out to the bar and dance the night away in all my glory anymore, i rarely drink either, even for fun. I wasn't a massive drinker to begin with, but my sense of adventure and my impulsiveness doesn't function the way it did before i got to this point.

So while I'm going out tonight, I'm not getting pissed drunk. With my luck I would, and I'd get the call, and end up being too inebriated to function and ultimately get my transplant. And i'd be too mad at myself to forgive me...but i guess if that ever happened, i would be too drunk to even remember something like that had happened!

Upon thinking lastnight - as I often do - a list of dates ran through my head that reminded me just how long this pre-tx journey has actually been. Pre-tx does not begin the moment you get listed; it begins the day and time you find out you need one.

End of January 2007: my lung doc casually mentions methods of treatments to me, and ends my appt with saying, "...and in the future....lung transplant" and promptly gets up off her chair and flies out of the room. I get to my car and cry and pound the steering wheel.

April 2007: feeling shoddy, during a routine PFT test, I know it hasn't gone well. Upset, crying, and breathless, the tech looks at me and asks, point blank, "are you listed?", which I reply "for a transplant?" to, which she states, "yes" to which i answer, "no", and ends with her informing me that "you should be". Appt. ends with me crying hysterically, alone, on a ward that's under construction and I keep getting lost, coming back to the tech and asking how the hell to get off the floor. I find the elevator, go for an xray, crying uncontrollably during it, lose a hair pin, and go for my IV, where i spent the next 24 hours crying straight b/c life as i knew it was ending.

May 2007: go to check up appt with pulmo, who informed me that my last PFT was 27% and that i should get evaluated for a transplant. I look at her and ask, "Umm.....what. the fuck?" and luckily this time I came with my dad who asked questions. We found out i needed a double lung tx, and that my dad couldn't be a living donor b/c as i pointed out, like a heartless child, dad's lungs are 'too big.'

June 2007: Begin O2 at night.

July 7, 2007: Spend a night in the god awful Sleep Lab.

July 2007: letter arrives from TGH announcing when my consult would be.

Sept 25, 2007: consult at TGH. Blow 29% at PFTs, am told i can go ahead and get evaluated and that i'd make a great tx candidate who would have an 'amazing outcome.'

Dec 17-22, 2007: Transplant Evaluation occurs.

End of Jan. 2008 (a year!): get call from tx center; am 'a little early' to be listed, come back in 2-3 months. Heavy hearted...still hopeful.

Feb 2008: Get sick with Asperguillis.

March 2008: go for PFTs and re-checkup. Ask if i want to be listed 'now, or after school?' to which i reply, "after" (school would be done in 2 weeks!)

April 15: go back and tell doc i want to be listed.

April: Get pager.

April 29th, 2008: GET LISTED.

Which brings me to today...a month and a half after being listed.....I am hopeful that the call will come soon and I will be breathing normally in no time!

One thing I have noticed over this year and a half long journey is that my pulmonologist/respirologist seems to like me a lot more now that i'm compliant. Who knew!

Hopefully soooooooooon!

1 comment:

Alice said...

My pulmonoligist also likes me a lot more now that I'm not permanently pissed-off with him anymore!!! My journey also started end of Jan 2007, when said Dr said 'you're a late referral'... but because I was so late, everything happened faster.. which is cool, even though I waited 8 mnths for the lungies to arrive!!! Looking forward to the rest of your journey..