1. < Lung Health

Inactivity with pulmonary fibrosis

Posted by mytmoe30 @mytmoe30, May 28, 2023

My husband has PF. He is 65 yrs. old. He has chronic coughing. He says moving makes him cough so I can’t get him to walk. We are hoping that being on oxygen will work, but he needs retesting done. Dr. said he’s not bad enough. His quality of life sucks. We call it the new normal. The other day he said to me “I don’t want to ruin your life”. I assured him with his condition he is still himself and I want him to be here. I am not sure how to be a caregiver for this illness…I am over the resentment part and am accepting. Anyone else in similar situation would love to hear from you.

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mytmoe30 | @mytmoe30 | May 30, 2023
In reply to @suzcape "I was diagnosed in Nov 2020. I too have the cough - I will not allow..." + (show)
@suzcape

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.

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Thank you…I will show my hubby your message

REPLY
mytmoe30 | @mytmoe30 | May 30, 2023
In reply to @suzcape "I was diagnosed in Nov 2020. I too have the cough - I will not allow..." + (show)
@suzcape

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.

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Mentos, good idea

REPLY
mytmoe30 | @mytmoe30 | May 30, 2023
In reply to @george6768 "I was diagnosed with PF about 1 1/2 years ago. I think it was caused by..." + (show)
@george6768

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.

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Hubby has a bike..he needs to try again

REPLY
ch47 | @ch47 | May 30, 2023
In reply to @mytmoe30 "Thank you for the idea of doing rehab." + (show)
@mytmoe30

Thank you for the idea of doing rehab.

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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…

REPLY
1 reply
mytmoe30 | @mytmoe30 | Jun 1, 2023
In reply to @george6768 "I was diagnosed with PF about 1 1/2 years ago. I think it was caused by..." + (show)
@george6768

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.

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Thank you for your reply. Oh to be able to see the ocean! What a nice date for you two.

REPLY
mlmk0601 | @mlmk0601 | Jun 1, 2023
In reply to @ch47 "Wonderful that you have a great husband and sounds like the two of you have been..." + (show)
@ch47

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…

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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

REPLY
1 reply
ch47 | @ch47 | Jun 1, 2023
In reply to @mlmk0601 "My husband was on OFEV last year. We were so happy after the ins approved and..." + (show)
@mlmk0601

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

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Thank you for your suggestions and I am so sorry you lost your husband. Open Doors has been helpful with information but we did not qualify for assistance.
Just started Ofev 4 weeks ago. He has RX for blood work in two weeks. Then another one like a month after, so our pulmonologist seems to be on it.
Hoping because he does not consume any alcohol, that will be helpful, but that might not have anything to do with how the liver reacts to the medication. He never smoked, either, or worked somewhere that had obvious causes for IPF, and he still got it. So who knows. We are still trying to adjust to this whole thing…

So wonderful to have this site for support…thank you again, and my prayers for you

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yvonne55 | @yvonne55 | Jun 9, 2023

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. 🙂

REPLY
1 reply
ch47 | @ch47 | Jun 10, 2023
In reply to @yvonne55 "God bless all of you fighting this IPF. I'm not sure after a year now, what..." + (show)
@yvonne55

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. 🙂

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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.

REPLY
1 reply
yvonne55 | @yvonne55 | Jun 11, 2023
In reply to @ch47 "My heart goes out to you for all the illness and anxiety have had this past..." + (show)
@ch47

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.

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Thank you so much. Yes I will post when I get any news. Trying to keep the faith and keep active!

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