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clipper
@clipper

Posts: 4
Joined: Mar 22, 2017

IPF and Pulmonary Rehab

Posted by @clipper, Mar 23, 2017

I am new here so first, hi 🙂 I do not have IPF but a friend of mine does. FYI I do have early stage 4 emphysema so I am somewhat familiar with lung disease.

I am wondering if pulmonary rehab is normally offered to IPF patients at some point in the progression of the disease. I cannot understand why my friends pulmonologist will not offer her pulmonary rehab. We have discussed this a few times, she has asked but he simply tells her it won’t help. I can’t imagine why he would say don’t bother. Obviously it is not a cure, but the quality of life benefit of exercise is well documented, at least with COPD. Is there something different about IPF that would make PR a non-option? Or is her pulmonologist a non-option which is my gut feeling.

FYI Her heart is not an obstacle; she has done a stress test, echo, and cardio is all good. I don’t know her PFT details but she is clearly not in the end stage of the disease. That is not the situation.

Thanks for your input.

REPLY

Hi @clipper and welcome.
Great question. Not long ago I asked members about pulmonary rehab for people living with pulmonary fibrosis. You can see Steve’s answer here: http://mayocl.in/2nbVlMF (Note, you may have to wait 3-4 seconds until the link takes you directly to that spot in the discussion thread.)

I’m also tagging fellow members @timfair @steve1948 and @loisblo who have had pulmonary rehab and can share their experiences with you.

Clipper, while we wait for others to join the conversation, I think you might enjoy watching the stories Kate and Steven shared about the Harmonica therapy and the Breathless Choir for people with lung disease.
http://mayocl.in/2nsjVuI

Liked by clipper

@colleenyoung

Hi @clipper and welcome.
Great question. Not long ago I asked members about pulmonary rehab for people living with pulmonary fibrosis. You can see Steve’s answer here: http://mayocl.in/2nbVlMF (Note, you may have to wait 3-4 seconds until the link takes you directly to that spot in the discussion thread.)

I’m also tagging fellow members @timfair @steve1948 and @loisblo who have had pulmonary rehab and can share their experiences with you.

Clipper, while we wait for others to join the conversation, I think you might enjoy watching the stories Kate and Steven shared about the Harmonica therapy and the Breathless Choir for people with lung disease.
http://mayocl.in/2nsjVuI

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Thanks for the reply.

I wish I could go to Pulmonary Rehab once a year for a tune-up. It really got me exercising and the people there were so helpful and I learned a lot in the classes. I exercise at home with a stationary bike and try to walk when weather permits. Good luck to you with Rehab.

Hi and I’m so glad you found Connect and shared two stories.
I am a nine year lung cancer survivor. In 2008 there was little info for lung cancer patients especially never smokers.
A guided paced breathing (with an app) and a workbook helped save my breath and life! You may find some studies showing walking and deep breathing expertise help you and your friend, at least it is worth a try. Note: It took me three months post lung cancer surgery to notice the exercise was helping. Practice practice!
Have you thought about a second opinion?
Let’s keep connected, ok?
Take care
linda

@llwortman

Hi and I’m so glad you found Connect and shared two stories.
I am a nine year lung cancer survivor. In 2008 there was little info for lung cancer patients especially never smokers.
A guided paced breathing (with an app) and a workbook helped save my breath and life! You may find some studies showing walking and deep breathing expertise help you and your friend, at least it is worth a try. Note: It took me three months post lung cancer surgery to notice the exercise was helping. Practice practice!
Have you thought about a second opinion?
Let’s keep connected, ok?
Take care
linda

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Thank you for the reply.
I have been bugging my friend to get another opinion because this just doesn’t make sense to me. Hopefully I am wearing her down 🙂
Personally, I have done pulmonary rehab and then a level 3 pulmonary exercise program. It has made me a full blown exercise fanatic, at the gym 5 days a week. Bad lungs aside, I am in better condition today than I have been in decades. I am a believer, glad to hear you are too. It is as important as any medication we might take. Hope you are doing well with your recovery.
Debbie

@llwortman

Hi and I’m so glad you found Connect and shared two stories.
I am a nine year lung cancer survivor. In 2008 there was little info for lung cancer patients especially never smokers.
A guided paced breathing (with an app) and a workbook helped save my breath and life! You may find some studies showing walking and deep breathing expertise help you and your friend, at least it is worth a try. Note: It took me three months post lung cancer surgery to notice the exercise was helping. Practice practice!
Have you thought about a second opinion?
Let’s keep connected, ok?
Take care
linda

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Debbie: You rock. keep up the great work with “you” and your friend. Together maybe we can get your friend CONNECTed:-)
hugs
linda

Liked by jms7

@llwortman

Hi and I’m so glad you found Connect and shared two stories.
I am a nine year lung cancer survivor. In 2008 there was little info for lung cancer patients especially never smokers.
A guided paced breathing (with an app) and a workbook helped save my breath and life! You may find some studies showing walking and deep breathing expertise help you and your friend, at least it is worth a try. Note: It took me three months post lung cancer surgery to notice the exercise was helping. Practice practice!
Have you thought about a second opinion?
Let’s keep connected, ok?
Take care
linda

Jump to this post

Hi, I have not heard about workbook. Where would I find something like that. My husband wants me to call Mayo for an appointment for their opinion. I have bad spells where I can not breathe well even with oxygen and sleep sitting up straight in a chair. They usually pass after a few days but this one has been hanging on for weeks. My doctor put me on a steroid pack and it helps plus I live in AZ and the whole place is in bloom and the wind blows sand in the air. I am wearing a mask when I go outside. I feel foolish but anything that helps. About the mask, I have been avoiding crowds and activities where there are lots of people but now that I am wearing a mask, maybe I will get out more. Good talking with you. Lois

@loisblo, Lois .. I have a lung disease .. the below is what I use .. hope it might help you! Katherine
TRAVEL-MASK and Air Supply Mini-Mate Personal Ionic Air Purifier–Black I was traveling to a VERY air polluted area .. I did a LOT of research and found there was a BETTER mask than the 3M N95 mask .. PLUS could looked kinda cute! I found it decent to breath with. I now will carry it as needed. https://www.amazon.com/gp/product/B01KK2NSVK/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&tag=cambridgemask-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=B01KK2NSVK&linkId=f4be07a257cb28b462c1db1dc0c037ab
Hope you find this helpful! Katherine ALSO use: Air Supply Mini-Mate Personal Ionic Air Purifier–Black https://smile.amazon.com/gp/product/B000B6CMZ4/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

@llwortman

Hi and I’m so glad you found Connect and shared two stories.
I am a nine year lung cancer survivor. In 2008 there was little info for lung cancer patients especially never smokers.
A guided paced breathing (with an app) and a workbook helped save my breath and life! You may find some studies showing walking and deep breathing expertise help you and your friend, at least it is worth a try. Note: It took me three months post lung cancer surgery to notice the exercise was helping. Practice practice!
Have you thought about a second opinion?
Let’s keep connected, ok?
Take care
linda

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Hi Lois: I understand your difficulty breathingbin blooming PHX! I have a xperienc d the same difficulty and it may be very frightening. I have been seen in Mayo PHX ER and they have been most helpful, because the doctors Insaw understood the allergies and what to
administer.
The cool air conditoind inclosed shopping mall helped, and keeping hyderated was beneficial. Moving helps me too.
In times like this I have to really sit down breath slow and deep and focus on relaxing my nervous system while i calm my body. It helps me restore by breathing.
You’re not alone. So l hope you keep CONNECTed.
Take care,
linda

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