Unlikely to get listed for Lung Transplant.

[Joseph260268]

Good morning all, I just wondering if anyone had come up against this in the UK and what they tried to do next. The situation is, I have been through the 3 day lung assessment at Wythenshawe Hospital in Manchester UK. As well as going back for several more tests over a further six month period. The transplant team informed me the 2 surgeons thought it was do able while the other 4 thought it was a step to far. Although it’s not a resounding no or a yes at the moment they have now asked other transplant teams around the UK if they have ever had a similar case and if so to share there finding on how it was achievable. I have just reached my 50th and I have lived with one lung lung all my life fighting Bronchiectasis and brittle asthma. I have battled all my life I still work and I have no intentions of giving in. If the answer from the transplant team is no as I understand they put your best interests first - what would be the next step? If anyone in the UK had a similar story please get back to me.

Joe

[Hidden]

Sorry about that Joe..I don’t qualify because of age now(but also because of poor health in the past) with LAM I would need a double transplant which wouldn’t necessarily give me a painless way of life or a better prognosis..

I think I would get in touch with the BLF helpline and ask for guidance.

[Joseph260268 in reply to Hidden]

Thank you.

[Carnival567]

A very difficult decision for you and the surgeons, but they seem to being proactive about finding a solution. I do hope you get what you need. Good luck xx

[Joseph260268 in reply to Carnival567]

Thank you.

[seyre]

Hi. Don't know what reason they have given you? I had my lung transplant 4 years ago at wythenshawe although by the time I got the call I was very week but fortunately it still went ahead. I have both admiration and faith in the consultants at wythenshawe who I still see on a regular basis. I honestly feel that if it was possible they would not hesitate. I wish you all the luck in the world and hope u get your transplant x

[Joseph260268 in reply to seyre]

Thank you so much for your comments.

[Snodgrass1]

Hi Joe, I'm afraid my situation was not a similar story to yours as I only got to seethe specialist team up in London last February. I had a morning of tests and then a discussion with Consultant who informed me how bad my lungs were and when I asked about transplants I was told that at 67 I was too old. Up to this point nobody had told me this fact although to be fair I had heard rumours as when you get to 65 and you haven't claimed anything you get nothing. I also asked for vehicle to be told by Mobility, sorry you have had to have claimed before you were 65. So that's something for you to remember. Also, and if you can, get your name down on the transplant list irrespective of what the " experts say" as you never know. My situation as I Had one of those Exasperations over Xmas/New Year and was hospitalised is I had a real downturn and am now on Oxygen 18hrs a day. Up till then I used to carry and use Oxygen when out and had to use a mobility Scooter, but although Imhad to give up Golf a couple of years ago I could go round the shops with my wife, slowly of course, but I could do it. Now can hardly walk 5 paces and I'm gasping.

So, what I'm trying to say is if you have any chance of getting a transplant, don't get fobbed off and go for it. You will know the chances are rare but what have you got to lose. If I. Had known or even now if I wax allowed I'd grab it with both hands as how I find my self is no life at all.

Anyway, hope that helps or found for thought.

[edited by moderator]

[Joseph260268 in reply to Snodgrass1]

Thank you so much, your comments are very valuable too me.