It's not a No yet to getting on the Lung Transplant List in the UK

[Joseph260268]

Good afternoon all,

Thank you for your responses the other day but I was just wondering if anyone had come up against this in the UK and is if so what they did about it or tried to do next?

The situation is, I have lived with one lung since the age of 6 months, I had brittle asthma at birth and my left lung collapsed and I was taken in to hospital and my lung filled with blood and it was decided at the time that the best course of action was to remove it. 13 year ago I was diagnosed with moderately severe bronchiectasis and in the last two years I have been on oxygen 24/7. Earlier last year I went through the 3 day lung assessment testing at Wythenshawe Hospital in Manchester UK as my lung is now deemed at end stage. As well as going back for several more tests over a further six month period. The transplant team informed me last week the 2 surgeons thought the operation 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 birthday battled all my life and I still work and I have no intentions of giving in. If the answer from the transplant team is eventually No. I will totally understand as they always put your best interests first - what would be the next step for someone in my position? That has a lung that is at end stage?

If anyone in the UK had a similar story please get back to me as I would like to know what the next step would possible be for me.

Thank you all for listening.

Joe

[cofdrop-UK]

Hi Joseph

Not sure about here but there is a lady on Bronchiectasus R Us who has just happily had her first annual post check following lung transplant.

Wish you well Joseph.

Cx

[Joseph260268 in reply to cofdrop-UK]

Thank you for your comments. x

[Izb1]

Wish you all the very best Joseph xx

[Joseph260268 in reply to Izb1]

Thank you

[Lynzilou]

Hi Joe

I was diagnosed with interstital lung disease 2 years ago and this has develped into pulmonary fibrosis which causes me a lot of problems. I looked into lung transplant, but there seems to be a lot of negativity surrounding this procedure. But I then read about stem cell - which is carried out in America. The documentation seems very positive - but as its from the Lung Institute carrying out the procedure, and charging for it, I suppose it would be!! Have you considered this course at all?

Regards

Lynne

[Joseph260268 in reply to Lynzilou]

No I haven’t but thank you for your comments.

[Lynzilou in reply to Joseph260268]

If you do decide to have a look at it and find out more, let me know. I will do the same

[Susan1200]

I wish you all the best Joseph ,you certainly are a fighter .

[Joseph260268 in reply to Susan1200]

Thank you Susan.