Inactivity with pulmonary fibrosis

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 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.

Thank you for the idea of doing rehab.

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.

Wonderful that you have a great husband and sounds like the two of you have been through a lot together…aside from not breathing well, is your knee healing how you had hoped? Can’t do much without knees…
Are you taking antifibrotics for your IPF? 10 years ago, I’m as I understand, there was nothing available. Ofev is one of two that are available today, and if you qualify, you can get a grant or possibly free medicine from the manufacturer. Won’t cure, but can prevent or slow progression. Look up Open Doors patient support, maybe they can help. Can seem like a rabbit hole doing the research, but might be a life saver for you.
Hope just IPF, not heart issues.
Will be thinking of you…

My husband was on OFEV last year. We were so happy after the ins approved and got open doors assistance. Unfortunately it affected his liver and caused low platelets. He passed from the complications. If you do use any of these drugs order liver function test for every month. Don’t wait for the 3-4 months interval

God bless all of you fighting this IPF. I'm not sure after a year now, what I'm fighting. I had pneumonia twice last summer. The second round was accompanied by sepsis. In January I was diagnosed as having aspiration pneumonia causing ARDS. 58 years old and healed well. Another 2 ct scans later and the pulmonologist said things look "good". BUT is sending me to yet another specialist to have a closer look at my lung scarring. I know little about this scarring business, and he doesnt want to say much until this new specialist looks at my scans. In the meantime, I am active, have excellent 02 saturation levels, no cough whatsoever, no fatigue, no unexplained weight loss, a good appetite, no muscle or joint pain. I thought my nightmare was over. Or is a new one about to begin? The scarring between January and April's scans show no scar growth. I've been waiting on this new specialist since May 10. Appt isnt till June 28. Its frightening to me being in limbo so I thought I'd ask for anyones knowledge. Thank you so much. 🙂

My heart goes out to you for all the illness and anxiety have had this past year, but great that you have pulled through all…
I agree, the waiting is the worst. We had to wait 6 months to see a great pulmonologist and get a diagnosis. Then almost a month of battle to get the medication. Which takes 3 months to start working (?) and in the mean time, you wait for potential nasty side effects.
However, sounds like you have a positive attitude (we try!) and as I understand, that will go a long way with all of your potential health issues. Maybe none!
Ps, IPF testing revealed an aneurysm that is pretty nasty-will be having third ct shortly to see when surgery is necessary, sooner rather than later… I guess IPF could be considered a life saver?
Best to you and please let us all know how you are doing after you see your new specialist.