im so sorry i have had some people concerned about me as i havnt been around for a while...............its been a difficult few weeks and i have popped on to leave huggs and sonia and jen messages...
im meant to be going to hairfiled tomorrow the 19th but i think its going to get canceled but either way i will pop on tomorrow evening to catch up
thank you so much for the messages etc that ive had and im sorry for any worry i have caused...your a fab bunch and i have missed your company over the past few weeks but im ok
oh god i really dont think i can go through with it.....i was at the hospital last week and the more they were telling me the more i thought it wasnt for me but im not making any decisions yet
they are going to ring me this week and tell me if its a yes or no.
how are you.......i really have missed a lot of people on here i just needed to take myself away from the illness for a while if that makes sense
Hi Mandy, we are stuck between a rock and a hard place and that's what makes my decision easy. Even if I refuse the operation I'm still not safe so even though the transplant option is risky its also not risk free to stay as we are.
At least with a transplant there is a real chance of returning to the fit and healthy people we once were.
I have talked to my lung consultant and respiratory team and many others who all think I should go for the transplant, maybe because they also see the dangers of staying as I am and hoping to dodge all the infections that could be very hard to fight off on so little lung function.
4 1/2 years ago my wife was being told that I wasn't going to survive the double pneumonia and ARDS that damaged my lungs permanently but I did. This experience somehow took all the fear away, I faced my demons and since then I seem to be able to take what ever comes my way, probably because I shouldn't really be here now and this bonus life I have been given is exactly what it says it is, a bonus where I'm determined not to live in fear.
Try not to be afraid Mandy, get on the list and keep your options open then you can get on with living until that phone call comes which could be years away, that's when you will know what to do.
Glad to hear you are ok. I emailed Laura asking after you but even she said that she had not heard from you. Looking forward to reading your posts tomorrow. Rib
Oh please let us know Mandy. I know you're scared but at least if you get a decision you can think seriously about whether to go ahead or not. No wonder you're so fed up. Thanks for updating us Mandy xx
yeah thats what im doing and also when i was there i got the chance to speak to a psychologist who was amazing and he is going to see if i can have some sessions with him on the phone cos its so far.....im really hoping they will say yes
So pleased you sound more positive about it than some of your previous replies. You must go through ups and downs about it to say the least, so brilliant there's a caring psychologist to help.
Im not at my best, but not dealing with anything huge like you - all luck and love to you.
Good luck with your appt.Mandy,do hope all goes well xx
Hi Mandy ,good to hear from you,hope you can make your appointment.I go to the BROMPTON on 22nd, might find out what they have in store for me.So glad you,re ok.Regards D.
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I think your all amazing so glad i found this site
Strange Noise
Im scared to death.
Glad to be back
HELLO IM BACK
