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I live in the Monterey Bay in California, so hope I can crash in on the UK folk here. It seems like a nice group. I was diagnosed with IPF around July of 2016. I am 67 years old. My condition went from no symptoms to a horrible crash after a lung biopsy, and a kind of recovery but with the certainty that this is a one way street. Estimates of survival time vary wildly depending upon treatment. I am being tested soon to see if I qualify for a lung transplant.
Here's the rub: Is a transplant worth it? The quality of life post-transplant appears to work for some people, although again, the survival time is very unpredictable. Oh dear, what's a person to do? Indeed, that is the question. Honestly I absolutely hate the idea of a transplant. Perhaps I not as attached to living as others are. That is not a death wish however. But I do wonder how much fuss one is to make in "hanging on." I recently read the book "Being Mortal" by Atul Gwande, a doctor who watched his father, also a doctor, struggle with "when to let go".
I am looking for some discussion on this that, well, sorry, doesn't rely upon God, or "blessings" nor even so much "have hope".
IPF is pretty isolating when on oxygen 24/7. Getting around with an E-tank is a drag, no pun intended. So if anyone wants to bank around on issues like the disease itself, mortality, pain, guilt, fear, sadness and all the rest, I'd like to have at it.
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