Inactivity with pulmonary fibrosis

Sorry to hear about your husband, I was diagnosed with IPF two years ago and have kept active as best as I can I exercise every day, do some chores around the house, etc. I can’t do a lot of things I used to do, like anything strenuous, or lift or carry anything that weighs a lot. The more you use the muscles especially the larger muscles the more oxygen they require. Unfortunately us with IPF/PF don’t have that luxury due to our already damaged lungs. I really believe a Pulmonary Rehabilitation class would benefit him. It teaches you a lot about our limitations and how to manage them all while staying active. They focus on exercise mainly which is a MUST while fighting this disease. Being active IS a NECESSARY EVIL of managing this disease and the symptoms that go with it. Best of luck!!!

I was diagnosed in Nov 2020. I too have the cough - I will not allow it to stop me from living. I have oxygen avail but as yet not using. I check my 02 levels frequently. Cough comes-goes on its own. Strange but what seems to help me are Mentos, when I am out and about. Guess its the mint, but calms cough to some extent. Was prescribed Benzonatate pills for cough, doesn’t seem to help any.
I believe moving helps loosen up the mucus to help get it up. Yes, it is a pain and disturbing to others. I have snuck out of venues to go out and have a good cough, then go back. Gotta live/love the life you have remaining - try not to let it consume you. I too was a caregiver to my husband - bless you and take care of yourself also, so spouse does not worry about you also.

I was diagnosed with PF about 1 1/2 years ago. I think it was caused by all the smoke from wildfires in the region where we live. I was fortunate to find a very good doctor in Portland, Oregon, who has reviewed three breathing tests and two CT scans over this time. He has taken a calm approach to my illness unlike the first doctor I had who wanted me immediately to take Ofev and go on oxygen at night. Yes, I cough a lot and have some problems breathing when I try to do too much but I have still kept playing golf and taking one-mile walks with my wife and dog a few times each week. I even joined a gym although I only use it to ride the stationary bike. The $35 per month fee is covered by my Medicare Advantage plan. Looking forward to something really helps my mental health. My wife and I set aside every Wednesday to drive to the Oregon coast for lunch and a walk along the ocean. We are also looking forward to some time this year to do visit some state parks with our very small RV. Visiting some family members is also on the calendar this year. I hope this helps you find some ways to get your husband off the couch.

I am 94 year old woman this year dx with pulmonary fibrosis and seeing a pulmonary dr .I will be starting breathing exercises classes 2 times a week for 8 weeks.Will have my second CT scan in June to compare with the last one taken 6 months ago.I had an hour breathing tests done at the drs office.Walk daily no oxygen when short of breath use a nebulizer with medication..I hope your husband has a good pulmonary dr.Good luck.Chelly

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.

Thank you all for sharing your experiences, hopeful and heartbreaking…My husband was diagnosed 6 months ago and started taking Ofev 3 weeks ago. He is still walking the dog twice a day, and playing golf several times a week. Minor coughing. Heathy otherwise. Will be having 2nd ct scan in two weeks. Will be able to see how things have changed.
Not much else to do but pray…
Does anyone know of a good online pulmonary pt site? Closest place is 1 1/2 hr away. Would love to start now…
Best to all of you!

The Pulmonary Fibrosis Foundation is an excellent site with online community forums:
https://pulmonaryfibrosisnews.com/forums
The American Lung Association also:
https://www.inspire.com/groups/living-with-pulmonary-fibrosis/discussion/8-yrs-on-ofev-and-now-uncontrollable-diarrhea/?source=email&dderh=c710bf52eadb7ccce5ee7c2ea9377791

I'm glad so many wrote in on this discussion. I was diagnosed with IPF a couple years ago. Mine is related to my autoimmune disease rheumatoid arthritis and schleroderma and Raynauds among other related issues. I've had a shoulder replacement and both knees replaced. The last knee replacement was done January 25th of this year. That surgery went really well and thought I'd be back to work in a couple months instead of three months. Unfortunately about 3-4 weeks after the surgery I developed pneumonitis and a few weeks later it turned into pneumonia. I work at a convenience store and just last fall went to part time because of my bad knee. Anyway I haven't been able to go back to work yet. My breathing was so bad I couldn't walk 20 steps without needing to sit down and catch my breath. I am so weak when I try to go for a walk. After two months I still can't walk more than 3-4 minutes without needing to sit down. I'm going for my first pulmonary rehab class tomorrow morning and hope it will help me. I'm 65 years old and have a wonderful husband who helps me with everything. What a blessing!
I don't know if you have seen these ads for the Cubii stationery cycle. I decided to buy one because I thought it would help me with my knee surgeries. It's pretty low impact so it might be something to check out to help get some exercise. I was kind of hoping it would be something well made and not junk. It's turned out to be a big help for me. I do about 30 minutes a day. I also have an Apple Watch and can check my oxygen levels. That helps me keep track of things. I still can't get my energy up. It's hard to do more exercise when I tire out so easily. I'm going to be seeing a cardiologist June 29th at Mayo in Rochester to make sure it's not a heart issue. I'm hoping and praying it's not my heart. You can check out that Cubii at Cubii.com.

Thank you for sharing

Thank you for the idea of doing rehab.