Waiting For Transplant?

[seyre]

Has anyone signed up for the study EVLP? How do you feel about joining the study and are you willing to accept these lungs. It would just be interesting to discuss this with someone of like mind. I am pretty sure I am going to join the study but still interested in how others feel, for or against.

[Puffthemagicdragon]

I'm having a read about EVLP on here as I haven't heard about it before.

hta.ac.uk/project/2554.asp

[Gilliam]

Hi there

I have signed up. I took the decision that if it increases my chances of getting a lung transplant I would take it. As with anything there are no guarantees and I might have to wait longer as I am small in stature, a common blood group and sensitised to approx. 30% of the population.

Please do message me if you would like to chat. It can be a lonely place being on the list. I sometimes forget that I am on it - coming up for 6 months now!

x

[seyre in reply to Gilliam]

Hi, I have been on the list at Wythenshawe for nearly a year now, I got a call approximately a month ago but unfortunately the lungs were not suitable for transplant, we just put it down to a trial and now no what to expect. I was diagnosed approximately 11 years ago and started to deteriorate about 3 years ago. I am now on oxygen as and when I need it but can do very little. My husband suffers from frontal lobe dementia so it puts extra stress on me, he can't help it but does not realise how limited I am and expects me to do things I am unable to. Luckily I have a good daughter and grandchildren who are always there to help. I was in hospital earlier this year and put on bi pap, think that was my worst experience and since then I have had to resign myself to using a wheelchair if I want to get out and about. It is pure vanity that makes me not want to. I am 62 years of age but with a young mind, feel great just can't breathe! I sometimes think it would have been good to keep a track of this condition from the begining cos I'm sure it would be of interesting for anyone just diagnosed although I guess everyone is different but we all have the same goal at the end of the day. Guess you and I are one of the lucky ones being offered the chance of a transplant, I've heard quite a few who have been turned down for various reasons. Well thats me! How you coping? Keep up the chat please its great to hear from you and hopefully we will get to the fun part. Love from Sue

[dall05]

Hi Sue, I've been on the list for 3 months now and had 'the call' once already which turned out not to have an antibody match.

I am 53, living with PF and my lung gas exchange is 25% but considering that I'm doing all right at the moment. I can manage 480 metres off oxygen on the 6 minute walk but my sats will drop too 74 by the end.

I have been offered to sign up for the EVLP option and will probably go for it unless I hear of any good reason not to.

Tony.

[seyre]

Hi Tony, Thanks, guess if we want a better quality of life we have to take all options open to us. Sue