I have been symptomatic since 2008. Yes! You read that right. I’ve recently received the dreaded PF diagnose and am on oxygen 24/7. My lungs are severely scarred and fibrotic. My other organs are now been effected by the PF. My heart is enlarged, I have a mass on my liver and my kidneys are having issues. A transplant surgeon wants to do a biopsy on my lungs. I do not see the advantage of having this done. I do not see how this could possibly give me a better qualify of life. The surgery is being done by a transplant surgeon because the cardiothoracic surgeon says I am too risky a patient for him to perform it. It would be invasive and I would have to be intubated and of course, extubated. They are worried (and I am as well) about the extubation process where I could potentially end up needing a tracheostomy.
My question to all of you is this……should I have the surgery or not. Either way I will still be on oxygen and my illness will continue to progress ending in death.
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