PCD Family Support Group (UK)
302 members147 posts

Has anyone had a lung transplant?

They are starting to talk to my husband about lung transplant, just starting the pre-transplant listing testing period. Has anyone had a lung transplant? If so, what was it like for you? Suggestions of things to consider?

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I don't personally know of anyone in the UK with PCD, who has had a lung transplant. That's not to say there aren't any out there that have, but through being on the committee of the PCD Family Support Group UK for the last 25 years it's not something I have come across. others may know otherwise.

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I've heard that there is a teen who is treated at Bradford hospitals through the north of England paediatric PCD team who had a lung transplant. Maybe someone from that team would be a good first contact, although I know you're referring to an adult.

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I know a lady, around 45-50 years who did this. The procedure it self, is huge. And I guess there are some risks involved in doing this, however, some doesn't have any other alternatives. When she was operated, it took months for her to really start "living the life", however, she is now fully recovered, and living a normal life.

I guess the experience will be different for each person, depending how your body respond to the operation itself. Wishing him the best of luck!

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You will probably find more info on PCD and lung transplants on the American PCD Foundation website, where it seems transplants take place more so than in the UK.

pcdfoundation.org

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Thanks to you both for your responses. It is a lot to absorb and consider. Pretty overwhelming right now. Very scary, and yet hopeful.

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