1. < Lung Health

Interstitial pulmonary fibrosis

Posted by ch47 @ch47, Aug 3, 2023

My husband was diagnosed 8 months ago with IPF, an incurable lung disease. He is still very active and not coughing, and taking OFEV for it for about 3 months. It will only hope to slow down the process. Very expensive and we are out of the co-payment help eligible group.
Does anyone have any experience with this disease? The manufacturer does have a support system where they call and send literature regularly, but I’m not sure that is really helpful…

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ch47 | @ch47 | Aug 5, 2023
In reply to @maryecox "And don't forget to walk, if possible. At the beginning of my ILD, I would look..." + (show)
@maryecox

And don't forget to walk, if possible. At the beginning of my ILD, I would look at a hill and feel defeated. Now I am able to climb the hill. Make sure you have a good doctor. There are online lung measurement gadgets that you can order to test yourself. Are you aware of any?

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Thanks…not away of any online breathing gadgets, but another rabbit hole to go down 🤣🤣😘 will also do some cellcept research today.
Thank you again!!!

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1 reply
ch47 | @ch47 | Aug 5, 2023
In reply to @ktgirl "I was diagnosed with ILD a few years ago. Really didn't think it was too bad..." + (show)
@ktgirl

I was diagnosed with ILD a few years ago. Really didn't think it was too bad but early this year, March, I had pneumonia and that really hit me hard. I'm still trying to get back my stamina. I've been through pulmonary rehab and now I'm going to drive to a wellness center to use their exercise equipment. I see a pulmonologist at Mayo in Rochester MN and she has suggested Ofev. I don't like the idea of the stomach issues and the cost. How much does the CellCept cost and are there any side effects? I am trying to walk more too. Now I am able to walk for 10 minutes at a decent pace but have a ways to go yet.

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Ktgirl,
So sorry to hear about your drop…Ofev is expensive, but depending on your income, etc, you may get it for free from company or find help with copayments.
Tummy things may not present, and could possibly be prevented or managed. If you start to have something, doctor will adjust, or possibly stop Med for a little while.
If you want more info, please pm me…
Sounds like you are working hard to get back on track!

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ktgirl | @ktgirl | Aug 5, 2023

My pulmonologist suggested Ofev but I've hesitated because I recently started Actemra which is supposed to help with progression of ILD. I'm also interested in CellCept I hadn't heard of that before. I have RA and schleroderma. The schleroderma is what caused my ILD. I am concerned about the stomach issues with Ofev and from what I've seen of CellCept there is issues with that too. I guess I'll see what the pulmonologist has to say when I see her in January.

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hikerguy62 | @hikerguy62 | Aug 5, 2023
In reply to @thisoldewe "Thank you Hikerguy for your excellent comments; personal experience and excellent medical guidance is a sterling..." + (show)
@thisoldewe

Thank you Hikerguy for your excellent comments; personal experience and excellent medical guidance is a sterling combination. Thank you too for the links.
By looking at your byline, it seems you are doing your best to fight the odds.
Well done!

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You're most welcome!

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maryecox | @maryecox | Aug 6, 2023
In reply to @ktgirl "I was diagnosed with ILD a few years ago. Really didn't think it was too bad..." + (show)
@ktgirl

I was diagnosed with ILD a few years ago. Really didn't think it was too bad but early this year, March, I had pneumonia and that really hit me hard. I'm still trying to get back my stamina. I've been through pulmonary rehab and now I'm going to drive to a wellness center to use their exercise equipment. I see a pulmonologist at Mayo in Rochester MN and she has suggested Ofev. I don't like the idea of the stomach issues and the cost. How much does the CellCept cost and are there any side effects? I am trying to walk more too. Now I am able to walk for 10 minutes at a decent pace but have a ways to go yet.

Jump to this post

Keep up the walking and maybe even purchase a Microlife Digital Peak Flow and FEV Meter online at Amazon. Easy to use and a good indicator of your progress. Also available online is the small device doctors put on your finger to measure your oxygen level. I don't know how much CellCept costs but my copay is $ 10.00/month. Ask your doctor about it. Good luck to you and keep on increasing your walking time.
t

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1 reply
maryecox | @maryecox | Aug 6, 2023
In reply to @ch47 "Thanks…not away of any online breathing gadgets, but another rabbit hole to go down 🤣🤣😘 will..." + (show)
@ch47

Thanks…not away of any online breathing gadgets, but another rabbit hole to go down 🤣🤣😘 will also do some cellcept research today.
Thank you again!!!

Jump to this post

Microlife Digital Peak Flow Meter on Amazon. Also available is the device doctors put on your finger to measure oxygen.

REPLY
1 reply
ch47 | @ch47 | Aug 6, 2023
In reply to @maryecox "Microlife Digital Peak Flow Meter on Amazon. Also available is the device doctors put on your..." + (show)
@maryecox

Microlife Digital Peak Flow Meter on Amazon. Also available is the device doctors put on your finger to measure oxygen.

Jump to this post

Thanks for the info on the devices. Since he is doing so well, on his walk as I write this, will have to introduce the idea of using these things at the right time….I have asthma, and just switched to his new pulmonologist. My breathing testing is coming up in the next month or so, might be a good time to introduce something like these items as they would be helpful for me, and him if he chose to use them…sneaky. He’s still freaked out about all of everything, even though nothing has appeared to change in his life. Fear of the unknown…
I will screenshot your information so I don’t loose it!

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ktgirl | @ktgirl | Aug 6, 2023
In reply to @maryecox "Keep up the walking and maybe even purchase a Microlife Digital Peak Flow and FEV Meter..." + (show)
@maryecox

Keep up the walking and maybe even purchase a Microlife Digital Peak Flow and FEV Meter online at Amazon. Easy to use and a good indicator of your progress. Also available online is the small device doctors put on your finger to measure your oxygen level. I don't know how much CellCept costs but my copay is $ 10.00/month. Ask your doctor about it. Good luck to you and keep on increasing your walking time.
t

Jump to this post

Looks like the digital peak flow meter would be a good investment. I noticed they showed a gadget called the Breather. I'm not sure if that is something that would benefit me or not. The respiratory therapists I saw didn't really suggest anything other than exercise and walking. I can get my blood oxygen levels on my Apple Watch so that takes care of that. I have Raynauds so they can't get a reading from the oximeter. Thanks for the suggestions.

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totty | @totty | Aug 7, 2023

This is a new question.
My spouse has IPF and currently is provided portable oxygen and a concentrator with Inogen. We are very worried about power failures and have made numerous efforts to obtain oxygen canisters as back up for power outages. To no avail! We are always told that as long as we have Inogen he doesn’t qualify. All of the others in his pulmonary rehab have emergency canisters provided by their provider of concentrator. It is a frustrating situation. Two pulmonologists have tried to assist us and oxygen companies with canisters refuse even if we pay as long as we have Inogen. Last week I was told that by law the concentrator provider must provide emergency canisters. We live rurally and often encounter outages. I have notified power company but they can’t promise priority. Inogen said “call 911; go to ER; use your phone charger.” All impractical long term solutions.
At level 5 Inogen batteries last little over and hour and we only have two.
Who knows the ropes on this situation? Surely we are not the only ones in this situation.
I have considered a portable generator as back up as all other efforts seem to fail. I am very frustrated.
I have tried to reach the American Association of Oxygen Providers and number not in service! One more frustration.
One company told me there is a law that concentrator provider must provide emergency coverage.
Anyone know of this law?

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3 replies
ch47 | @ch47 | Aug 7, 2023

Dear girl,

We are not at the oxygen stage…and I have no information about oxygen, but now many questions…
Have seen the commercials for inogen on tv, and thought how great that is-small, portable oxygen! Never even thought about power outages or the level of oxygen needed and how long the batteries would last at higher levels…

Some questions-how long
are the rechargeable batteries good for…are yours getting older? Is there a way to test if they are still strong?

That won’t help for long power outages, but might help you get to help.

Can you recharge the second battery in the car? Can you use the oxygen while it is being charged in the car-until you can find real electricity? How long to charge?

Can you have a large tank in the house for emergency? Not portable of course.

I sound so dumb-I’m sure you have thought of all this stuff…

Years back, we used a small gasoline generator for small household stuff-might be something to seriously consider as you mentioned. Had to add a special outlet to the house to run cord from generator.

More questions… do you have propane? I think there are propane generators…would be seriously easier.

Then you are in control-I think that is the worst thing…not being able to be in control.

Is there a professional, such as just one appointment with a lawyer that might be able to point you in the right direction? Maybe someone in a church/community organization/etc could help with finding answers about the law concerning oxygen backup…

I will see if I can look for anything more than you have found…
I’m sure that others reading this may know of some information about backup oxygen or how to find it…

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