My Double Lung Transplant

Thursday, October 16, 2008

Will it ever come?

I just got back from getting my hair 'did'. I got blonde and maple colour put in it, and i also got a bit of bangs! They look fine if i have sunglasses on or my hair up, but when my hair's down.....I look a little bit like an alien. We're not sure exactly how we feel about this yet. We'll have to consult ourselves on the matter a little later on when the shock has worn off.

Went to TGH yesterday for rehab. So far this week i've had no appts! Next week I am attempting my G driving test again (hope all my fucking exterior lights are working!) and then the week after i have a meeting with the surgeon about the results of the scope i just had, and the day after I have PFTs.

I dunno how i feel about all this testing though to be honest. Each time i get a new test scheduled I feel like it's a set back and a step back. I dunno...somehow i have an inkling that i'm put on hold almost on the list until i get these appts last week - hello! - i finally got over that hurdle, felt a little closer to the finish line and a little closer to transplantland, and bam, nope, sorry, you have 2 more appts. Please try again. Do not collect $200. Do not get lungs. Stay behind the tape. Don't forget to cough.

I dunno. Maybe i'm just a miserable sod but this waiting game and this constant testing is wearing me out and getting me down and i don't like it for a bit. There were 3 transplants done over the weekend at TGH and when all the Wednesday people saw me, they were bummed b/c they were hoping i had been one of them. But no. Maybe i'm just a horrible, selfish person. I dunno.

As it stands, in this very moment, in this very little space of time, I feel like it might not ever come. And when it does, I will have waited a very long time. I hope this is not the case and that i've just had too much time to think, but it sucks feeling this way.

I can't be the only one who feels this way, can I??


Jennifer said...

This made me tear up, because it kind of broke a little bit of the denial wall I hide behind- I feel like that just about every day while I wait to get listed, but it's just easier to pretend nothing's going on.

BreathinSteven said...

Hey You...

It made me tear up too... I remember feeling a lot of what you're feeling -- and I remember not liking it... I remember Laura pointing out some notes about depression in my chart the first 5-6 months and I was thinking, "bullshit, I'm not depressed..." Looking back, how do we avoid some of that?

They told me I'd wait a year, give or take a few months... Our support group said 9 months tops... I waited 2 years 7 months... There were people who were listed a year after me and transplanted 6-8 months before me... But you just keep plugging...

There were quite a number of days when I wondered if it was ever going to happen... Luckily, I don't think I ever got into a funk about it -- but man, it was a tiring slog... I was surrounded by people who cared deeply about me -- still am... I can tell that you are too... That means a lot.

For the record -- it's not the case and you've just had too much time to think. Because, if there is one fucking thing you have right now, it's plenty of time to think!!! Thinking is not always an advantage at this stage of the game -- maybe you should have gone less maple and more blond... (Just joking -- I think you're beautiful with any color hair and I deserve to be bitch-slapped for the blond comment. Fortunately, I'm, like, a thousand miles from you and your reach ain't that great right now...)

You take care, little buckaroo...



Alice said...

I felt like that a LOT deary... and what was even more shit, is that every time I mailed the co-ordinator she said they had done NO lungs (they only do abt 5 per year)... so I REALLY felt like I'd never get lungs... But... you WILL get them!!!!!

Amy said...


That's all I got for ya!


Tara said...

I'm sorry the wait feels so long. It sure feels like a long time just watching you wait, and all I have to do is read your blog! So I can only imagine how tiring it is for you.

But even when you're down, you make me smile Bree. Keep that sense of humor. :-)