anyone else with fibricystic interstitial lung damage from long covid
Interested in hearing from anyone having interstitial lung damage due to long covid. There is no treatment and life span can be as little as 3 to 5 years. I am on oxygen 24/7 with no end in site except eventual inability to breath. I will not consider any lifesaving efforts if that happens. I am too old for a lung transplant.
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Yes, I had covid December 2023 and following that, noticed my energy level was decreasing until a year ago I was referred to a specialist and diagnosed pulmonary fibrosis. My specialist kept referring to birds or asbestos as the primary cause despite my having had no contact with birds or asbestos.
I had a bad reaction to prednisolone so stopped taking it.
A lung transplant is out of the question as I am early 80's.
I am now venturing on to oxygen and will be trialling Zen O with the hope that it will provide some improvement on my liveability.
It is a scary situation as I am living at home by myself with some help from my son who lives 15 minutes away. I volunteered in an aged care facility after covid but the care towards some residents was really bad so it's a place to be kept well away from if possible.
Being able to belong to this site I find very helpful and I hope you do too.
Liz
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2 ReactionsThis was my experience. I am 75 and at the end of October last year, I was hospitalized with organizing pneumonia and then in mid November my son died unexpectedly....5 days later, I had a pulmonary embolism, also landing me in the hospital. My pulmonologists thought I could bounce back,,,,both OP and PE can occur post covid.....but now I am on full time oxygen. Meet with a doc in a week...just had a fresh CT scan. not sure what lies ahead. To be honest , I have had undiagnosed breathing issues for awhile before the covid....thought it was allergy related. In the mystery .....and working with being at peace with whatever unfolds.
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