I am 27 years old and I have cystic fibrosis. My lungs are pretty bad. My left lung only works at about 12% so my right lung does most of the work. Over the last year my health has taken a turn for the worse and I was assessed for a double lung transplant. I also have several bacteria growing (this is common in CF) and one of the bacteria is resistant to all antibiotics. So the transplant team said I couldn't be listed because the chances of me making were slim to none since the immunosupressing drugs that I would have to take before, during, and after transplant would allow the bacteria to run wild and with no antibiotics to control it, I would die. So my problem is I can barely breathe, I can barely do normal activities of daily living, and eventually, I think my heart will give out. The docs have told me that I am very very sick and that my prognosis is not great. Anyone have any advice?
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