So I went on weekend leave and now I'm back in hospital. I have started radiation therapy for chronic rejection. Yesterday I had a consultation with my dr and it was time to ask some questions, would I gain any lung function back? Unfortunately they don't think I will, I was extremely sad at this and although I'm not sure what my lung function is due to my collapsed lung know it was 36% when I came in and I have got significantly worse. I am very breathless on any exercise, walking around the hospital is ok as it's flat but any other kind of surface change, hill or stairs I'm gasping for breath. I use 02 when walking and I'm trying to keep myself fit and strong by doing squats, push ups, weights and lots of yoga stretches. It's hard work but I won't be beaten by this and the only way I can think to over come it is to battle through and remain strong and determined as ever.
My consultant said that what we were doing was trying to crack a egg with a hammer as it all we've got. I have to say it is extremely frustrating, my reply was 'but I did everything I could, I did everything right' you wonder why you? What did you do wrong? But the answer is nothing, it's one of those things and sometimes
no matter how hard you try luck just isn't on your side? It's a hard concept to get your head round because in so many ways I still feel like the luckiest girl in the world. Some where its like good luck and bad luck are fighting to get to me, one day one wins and I receive the greatest gift on earth, life, the next bad luck prevailed and gave me chronic rejection? I just don't know, it's the strange thoughts in my head that try to make sense out of life.
So once again, it's time to give up work and to concentrate on stabilising, hopefully once I'm stable I can go back or we will look at other options. I have received alot of support and I thank you all. Hoping my next blog will be some better news.
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hey kirstie, i know how you feel. i haven't had a transplant yet. even though my lungs are at 28% fev1 i still fight through everything. it sucks to feel so short breath. i went to busch gardens here where i live in florida and the heat plus humidity was insane. i pushed myself and i walked everywhere in the park. up and down stairs even though i felt i couldn't take a deep breath in. i hope they find a good treatment for you and your pft's go up. i sometimes wonder why things happen to us even when we do everything right. sometimes i feel like our souls picked these bodies for us to show how much spirit the human body has. how full of love and determination it is. also maybe in our next lives we will be superstars!! praying for you!
ReplyDeleteHi!! I had read your blog since the begining. I've heard about your story on a TV show which showed your wedding. It was very affecting!! You are such a brave girl, carry on your struggle as you do. You must be proud!!
ReplyDeleteTake care!!
Julie, from France
my thumb is up for you !
ReplyDeleteI truly hope things take a turn for the better for you Kirstie, thinking of you, take care, Kath xxx
ReplyDeleteI'm so sorry this is happening to you. You are awesome and inspiring and deal with everything with such grace and humour. I don't know how you make sense of it all but I do know that you're one of the best advertisements for organ donation which I've ever come across. Wishing you the very best of luck xxx
ReplyDeletesweet heart I hope you get what you want and need so very soon my love and luck I give to you xxxx
ReplyDelete