My husband developed PF (age 68) after a bout of COVID pneumonia in February 2022. His first pulmonary function test in June 2022 showed he only had 31% lung function. His scarring was in the bottom third of both lungs. The middle third of his lungs had inflammation that never cleared up even on prednisone and CellCept. Even on oxygen his sats would drop into the low 80s when he had any type of activity. Just walking to the bathroom was a struggle. The only thing that really helped him was inpatient pulmonary rehab where he received 3 hours of therapy (PT, OT, RT) every day. The problem is when he came home, he could not retain his gains as he could not maintain that level of activity he had in rehab and would gradually decondition. His breathing became so shallow that the CO2 built up and that was what eventually killed him (March 23, 2023). He fought for a year, but his lungs were just too damaged. The last 6 months of his life he kept telling me, "you don't deserve this." I told him he did not deserve it either and that we were a team no matter what (married almost 48 years).

If your husband does not need oxygen yet, I would encourage you to get him to pulmonary rehab so he can build up his endurance and reserve if the PF does progress. We learned strong muscles actually need less oxygen than weak muscles, but you have to keep active once you build up that strength and endurance in rehab.

I understand your dilemma as a caregiver. There are times I feel guilty because I tried to push him to do things because I felt he was just being lazy and taking the easy way out. Now I do not know if he was feeling worse than he let on--maybe he really could not do it. He did try for a while, but he kept saying "I'm not going to get any better--just let me go." That was hard to hear, and I tried to always put a positive spin on everything. Caregiving is both physically and emotionally wearing. Try to find a local support group if you can. I will pray for you and your husband.

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