I am new. First time ever posting on a website. Recently diagnosed with constrictive bronchiolitis after having an open lung biopsy done. That was a painful surgery but at least I got a diagnosis. I was/am devastated. This diagnosis is basically telling me that there is no cure, no surgery, nothing that can be done for this disease. The only help would be finding meds that can stop/slow the progression of the disease. Eventually, it will kill me. I don't know how much time is left--there is no way to know how much damage has already been done. They also do not know why or how I got it!! My pulmonary doc says he has only seen a handful of cases in his life and that it is very rare and that there is much they don't know about it. Since the surgery, I have been on oxygen 24/7. Prior to the surgery, I was not on oxygen. Had damage to my left lung from radiation last year (radiation pneumonitis) but doc says he doesn't think that it had anything to do with this diagnosis. I'm not so sure about that! If I could get off this oxygen, I know I would feel so much better. I feel like I'm in jail and can't get out! My freedom has been taken away. Any info, comments, solutions would be welcome. Currently on low dose of prednisone until middle of December. Will see doc again and he's going to try a new med (experimental) to see if it helps to slow down the progression of the disease. We are waiting for some blood tests to come back before he starts the new med.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.