Saturday, 9 October 2010

are you ok?

I've had so many people ask recently how I'm doing and besides "ok I got a port put in today and I'm to have a peg soon" I haven't really been able to explain how I'm actually doing. I guess the best part of all of what I'm about to say is I'm doing better than I was 5wks ago. Before I went into hospital I didn't even have the breath to stand up at the sink for long enough to brush my teeth and wash my face, the day I got admitted mum had to put a stool in front of the sink for me. I was bad, I just hadn't realised how bad.
Now I'm going to try and explain what's going on, as best I can anyway. A few weeks ago I had a lung biopsy to confirm if it was rejection, I didn't think it could be anything else but the biopsy was negative, NO rejection. The biopsy (and CT scans) showed inflammation and scarring or fibrosis. Basically something has injured my lungs (we aren't 100% sure what and we may never know now) and it caused inflammation which in turn caused permanent scarring. This isn't going to go away, nothing can be done for fibrosis. The hope is now that whatever caused the injury was acute and it isn't something that is going to continue injuring the lungs. The problem I'm left with is my lungs are once again scarred, they're never going to be normal, scarring doesn't go away. All I can do is build up my exercise tolerance as much as possible to maximise what I can do with them. I'm still on oxygen, I don't know when or if I'll come off it.
I guess what I'm focusing on through all this is this isn't ideal, far from it but it's better than the situation I was in pre transplant. I feel better than I did pre transplant, I have my days but everyone does, my life has already been extended as far as I'm concerned it's already been proved that transplant was the right decision. I don't know what my life is going to be like from here on out but I don't really care because I'm alive and that's all that really matters...

5 comments:

lulu said...

You know what baby, ur doing exactly what you have to...which is to embrace the fact we're here and although we are not textbook by any means we have much to be thankful for. I wanna PM you cos I would love to visit as I know where u are now, girl, do I know...sm folk will be doubtful but exercise tolerance can build up. I devised my own programme. It was hard, I cried, I still have my bath chair babe but it can get better xxx love u lots with dots...lets sort a meet up hun :-) xx keep smiling!!! :-)

Ducky said...

Rachy my dear, I love you more than you know. And I'm always pulling for you. you're one of strongest people I know. I've always known you could do it. A little scarring never hurt anyone! (ok, thats obvious bullshit lol) but hey, you're unstoppable, and scarring or not, you're doing fantastic. beating odds and defying death. just keep on keeping on my dear. all will work itself out one way or another <3

TRW said...

Hi!! I read your blog regularly! I just wanted to stop by and tell you that I have an award for you on my blog! http://atalw.blogspot.com!

-Tiffany

mark said...

I have been diagnosed with a similar disease....you inspire and encourage me to take any future battles on head first! I try to train most days which makes things much better by working the good parts of my lungs making them more efficient! It helps! God bless you!

Mark

Silver said...

I just wanted to stop by and leave you some luck. Two of my dearest friends had CF (they were brother and sister). I knew them since we were babies. Matthew lost his fight after the heart bit of his heart lung transplant gave out - the bit that he didn't need but had to have back in those days (this was 20 years ago). He had about 6 months of amazing life before that happened and I got a glimpse of what his life could have been with a "proper" transplant. I am wishing and hoping for that life for you.

 
Blog design by Adori Graphics