British Lung Foundation
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End stage transplant rare blood group

Hi just wanted to know if anyone knows how they determine when your terminal

I have end stage emphysema also Alfa 1 gene I can’t get on the transplant list as I cannot get upto there target weight even with food supplements I’m having a feeding tube put In but not sure this will help to make it more complicated even if I’m excepted my odds are very slim as rare blood group & very small frame but dispite this I’m still hopeful & remain positive I just hate being defined as terminal

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Hi Georgina, Sorry to hear what you have been going through. You have a great attitude though. I am unable to help with your question Im afraid. I do have the Alpha 1 gene too so know how bad that can make things. Just wondered whether you are a member of any Alpha 1 support groups? There are several on Facebook and they include people awaiting and post transplant who may be able to help. Let me know if you want links. And good luck with the weight gain. xxx

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Tube feeding can make a real difference if you give it a chance.

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