Lung Transplant

[Joseph260268]

Lung Transplant.

Good Afternoon everyone. I have currently been on the lung transplant list over 2 1/2 year and I attend Wythenshawe Hospital on a regular basis for updating bloods scans and x-rays. I am constantly told to keep as fit as I can which is difficult at times as I need a double lung transplant although I have just completed a lung rehabilitation course with the NHS over a 6 week period over the phone which I found very useful.

My question is providing all my other organs are working fine "at what point are you deemed not fit enough anymore for the lung transplant criteria"?

I have asked this question to my transplant co-ordinator and specialist before and I get mixed messages from them such as when you loose your muscle tone and your strength you would not be deemed fit enough?

I have gone back and said what about priority cases where patients are bed ridden and in hospital over long periods? If anyone can answer my question please feel free.

Kind regards as always

Joe Rogan

[madonbrew]

Hi Joe,

I’m sorry I don’t know the answer to your question but I really hope you manage to get your transplant soon!!! Must feel such a big thing to deal with emotionally as well as physically! Hopefully someone else will be able to answer your question!

Take care!

Dee 😊

[Joseph260268 in reply to madonbrew]

Thank you for your reply.

[HungryHufflepuff]

I don't know the answer either but I do hope you get your call soon.

[Joseph260268 in reply to HungryHufflepuff]

Thank you

[HighGables]

Hi Joseph, I took myself off the lung transplant list last November after two years with Harefield hospital, as I didn’t think I would be physically fit enough to cope with it anymore.

I think the day of tests that I had every six months gave them a yardstick to see how I was, and also seeing the doctor and showing you were mentally able too.

I did ask if it was age related and was told by one doctor at the Brompton it was 70, and at that stage I was 67. A senior nurse at Harefield said age wasn’t a consideration.

I do wonder as my older sister had IPF too and she passed almost two years ago. She was diagnosed at the same time as me, was three years older, and was never offered a transplant. I have another sister who is 66 with IPF, and they are now talking to her about a transplant.

I believe they assess you as an individual, so keep as fit as you can and stay positive.

Wishing you soooo much that call from the transplant team 😀. Jax

[Joseph260268 in reply to HighGables]

Thank you so much for your reply.

[Nettynonails]

Hi Joseph, My sister was on the transplant list for years then 7 years ago a match came up and she was at deaths door. Me and my two sister born with alpha 1 anti trypsin deficiency. My specialist say I'm to fit for transplant as they explained I would probably live longer on my own lungs as very high risk having transplant and they would rather you do everything to keep your own lungs going luckily my sister still going but its odds against her every year and she's only 62 . Hope this helps . Stay safe

[Joseph260268 in reply to Nettynonails]

Thank you so much for replying.

[Izb1]

Good luck Joe, hope you get that call soon x

[Joseph260268 in reply to Izb1]

Thank you.