I’m just starting the process to see if I am suitable for a lung transplant. I have scleroderma, Raynaud’s phenomenon & interstitial lung disease. Has anyone been/going through this process got any advice? I’m trying to weigh life quality without verses with having a transplant. Tia
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cheryldn
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I read somewhere that they only tend to consider transplantation in extreme cases where life expectancy may be assessed as less than 10 years - this is due to the significant risk of the new lungs not working properly. All other avenues would also have to be completely exhausted treatment wise and as you can imagine finding a suitable match is very difficult. How long have you had lung involvement?
Hi , I was in this situation 9 years ago, I was very fortunate to respond well to Chemotherapy sessions. The damage to my lungs calmed and after good follow up treatment I slowly got stronger. I expect you’ve already been offered this route or for some reason it has been ruled out, but I wish you a good future. Best wishes.
Hi, I was assessed for lung transplant a year ago and have been on the transplant list since then. Assessment involves 3-4 days in hospital having numerous tests etc. It’s important that you try to stay as fit as possible to assist in dealing with the transplant operation. Healthy eating, staying a healthy weight etc. Exercise if possible. This is hard when oxygen levels are low, but they do like you to be able to go from sitting to standing with no assistance.
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