Pulmonary Rehab from a Patient’s Point of View

Pulmonary Rehab from a Patient’s Point of View

Pulmonary Rehab from a Patient's Persepective www.pulmonaryfibrosisnews.comI’ve been going to pulmonary rehab for about two years.

It takes place at a very different kind of gym. It is a pulmonary rehab gym for people who have lung conditions and who need to be monitored (oxygen levels and heart rate) while exercising. Most of my fellow gym buddies have COPD or emphysema, and a few, like me, have pulmonary fibrosis.

Realize that the term “exercise” probably is different than you are thinking. It means moving my body while using supplemental oxygen and having my oxygen levels and heart rate checked every 10 minutes. My speed on the treadmill is 0.9 miles per hour. That’s really slow, but it is what I can do.

I go to pulmonary rehab three times a week, and it took me a while to feel comfortable attending because I feel so different from the other patients:

  • I’m 59 and the youngster in the group. Everyone else is in their 70s or 80s.
  • I’m one of a handful with pulmonary fibrosis; most everyone else has COPD or emphysema.
  • I am one of the few patients on a high level of oxygen (8 liters per minute). Most patients aren’t using oxygen at all.

Over time I got used to being there, now I am grateful to go.

It keeps me active and it feels good to know I’m doing what I can to keep my lungs in as good a shape as possible.

My doctor recommended this pulmonary rehab program, and besides exercising, I attended a 10-session class on how to take care of my lungs. We learned about our disease, nutrition, breathing strategies, nutritional counseling and finished each session with a “workout.”

Pulmonary Rehab from a Patient's Persepective www.pulmonaryfibrosisnews.comEach workout consists of 20 minutes on a bike and treadmill, along with exercises to strengthen the small muscles in my chest to aid with breathing.

At the end of the 10-session class we had a graduation, including a graduation picture that was mounted on a board and titled “Geezer Graduation.”

I didn’t like being in a “Geezer Graduation” picture since I was 57 at the time, but it was nice of them to make it a celebration when the education part of the program was completed.

Sometimes I get discouraged, feeling lame for what little I can do and so different from the rest of my gym buddies. It’s hard to watch someone next to me who is 85 and not using oxygen go 3x faster than me. Yet, my task is to keep my body and lungs as healthy as I can, so I keep going.

How about you?

I’m sure there are plenty of areas in your life where you wish you were able to do more. There may be times you feel discouraged and want to give up, or compare yourself to others and feel you come up short. That’s hard, and it is perfectly normal to feel this way.

As a pulmonary fibrosis patient I encourage you to do what you can, no matter the task.

Be kind to yourself about the struggles or limitations you have. My encouragement to you is this:

~ Let yourself feel sad or regretful for what you are no longer able to do

~ Be kind to yourself, “Yes it’s true that I wish I could _________. This shows how much I care and that I want to do my very best. Right now, for really good reasons I’m not able to. I will do what I can, and be a good friend to myself about my limitations.”

~ Do what you can do, and realize that even if your efforts are small, inconsistent, or take a long time, that every effort counts, every step matters, and so do you. How you treat yourself is more important than the result.

I hope this post gives you an idea of what it is like to do pulmonary rehab as a pulmonary fibrosis patient. No matter what, please be kind to yourself, and do what you can. I would love to hear your response to what I shared, so please leave a comment below, and share on social media if you feel this post would be helpful to others.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

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  1. Geoff Foley says:

    Kim, I am touched by your story having traveled the same journey with IPF many years ago. I am pleased to hear how determined you are to exercise as best you can and to stay positive. I am also wondering whether you are hoping to seek a lung transplant sometime soon? I was blessed with two new lungs more than eleven years ago, and this gift has allowed me to see another of my children marry and to witness the birth of two more grandchildren. My thoughts and prayers are with you.

    • Hi Geoff,
      Thanks so much for your very kind words, and for reaching out. I am so happy that you got a lung transplant 11 years ago, and are doing so well! That is an inspiration to me 🙂 I am hoping to get on the transplant list. I have a tricky situation in that I got pf from the treatment I received for breast cancer (chemo and radiation). I’ve been cancer free for 3 years, and need to get to 5 years cancer free until they consider me for a transplant. I’m trusting God and living the best life I can. It is a blessing to write this blog, and interact with others like you! Thanks for taking the time to reach out.

    • Hi Julia, no I’m not. I have pulmonary fibrosis as a rare side effect from chemotherapy and radiation treatment for breast cancer. Ofev is approved for IPF, idiopathic pulmonary fibrosis, so I am not eligible to get it. How about you?

      • Roberta Collins says:

        I was diagnosed with Interstitial Pulmonary Fibrosis this four months ago. I’m now on oxygen and searching for ways to make this easier to deal with. I’m wanting to go to a lung rehab class a couple times a week myself. I need to let my lungs heal more, in August I had hundreds of test and lung sample taken then in September I ended back I the hospital and had an open lung biopsy done.

        • Hi Roberta, so sorry you’ve had such a rough time. That is so much to handle over a short period of time. What a great attitude and goal you have to let your lungs heal and then try to take the lung rehab classes. Blessings and prayers are with you.

        • Barry Gauthier says:

          And what good was the open lung biopsy? How did it help you? I don’t understand why they do these since there is no cure.

          • Hi Barry, my understanding is sometimes this is done to make sure the diagnosis is correct. Some people’s CT scan’s aren’t conclusive. I chose not to get one because there is a lot of risk. I got a bronchoscopy (under anesthetic) where they look around and take a small sample of lung tissue. Different types of lung disease require different treatment, so this is why they do this.

  2. Susan Hunt says:

    What are the costs for rehab? I live on a fixed income with not much money to spare. I have IPF and I’m on 3 liters of oxygen. I was diagnosed a year ago.

    • Hi Susan, so sorry you are dealing with IPF. My insurance company covered the cost for me to attend a local pulmonary rehab gym. I would ask your doctor and insist on it. It is a universally recommended treatment for IPF. Blessings to you, Kim

      • Russel J Fabre says:

        Curious what insurance company covered the rehab. Ours turned it down. My husband did not qualify for a lung transplant due to Hepatitis C that has caused liver problems. Our insurance said they would only cover rehab after a lung transplant. Replies from others would be helpful. Thanks, Anita

      • Makayla says:

        Hi Kim. Your story has given us some hope. My husband is doing testing for PF. We are told Medicare won’t pay for it and if we wanted the rehab it’s out of pocket. May I ask your advice maybe what kind of insurance you use, or if you could put me in the right direction? I would greatly appreciate ❤️ Thank you for your story. Most people feel alone, it’s good to know we are not. God bless!

        • Hi Makayla, so glad my column was a help! Yahoo! We need the help we can get! I asked around to other patients about Medicare paying for rehab and got a lot of different answers. Do you have Medicare Part B? They may very well pay for it. This is open enrollment time. If possible ask an insurance agent what Part B plans cover pulmonary rehab. Another wonderful resource is an Online Pulmonary Rehab program I use called Pulmonary Wellness Online. I’m writing a column about it in 2 weeks. It is fantastic – better than the in person program I go to. Check it out PulmonaryWellnessOnline.com

  3. Rick Weldobn says:

    I have IPF and am about ready to start the rehab but do not know what insurance will foot yet. Very anxious to find out as my need for oxygen seems to be increasing daily.

  4. Steve J says:

    I was diagnosed in June 2016. 89yrs, male, 3L O2 continuous. I am now doing rehab on my own at a hospital gym. I pay about $40 a month and they supply O2, take BP and O2 sat, then keep their eye on me while I do what I can, they, are RN, Resp Ther, Exercise Ther, etc. The exercise is very helpful, something to do that is getting me moving, etc. I need to find one of these lung classes that deals more with IPF than COPD.

  5. Jim W says:

    Pulmonary Rehab has been terrific for me, just starting my fifth year after diagnosis with IPF. If I have to miss, such as now when I am avoiding crowds to avoid the flue, I do what I can to work out at home because if I keep moving, I feel good. Medicare covers pulmonary rehab completely.

    • Mary says:

      My understanding about Medicare is that they pay only for one series per lifetime.I don’t remember the number of weeks covered. I went to rehab several years ago and would benefit greatly from it now.

      • Mary K Millwood says:

        Why does Medicare cover Cardiac Rehab more often? When my husband needed Cardiac Rehab, the series started over in the new year and Medicare paid for another series.
        I was in a Pulmonary Rehab program some years ago, but if I continued after the original series, I would have to pay for it on my own. AND there was NO checking of your blood pressure or oxygen leavels.

  6. Thank You. I just recently fired my pulmonary specialist because he didn’t even mention we had a Pulmonary Rehab in my city. I found it on my own after hearing a commercial on the radio of another pulmonary organization holding a COPD question and answer night. I missed the event but know how important peer support and education can be in the area of our health. So I went searching around. After numerous disappointments with him and my Dr. telling me the rehab most likely won’t take me cause I am still smoking I got rilled since I spoke with the director of the rehab a year before to learn more about it. Boy, when we don’t get the right amount of 02 that depression sure sneaks in fast. Well, I took the bull by the horns. Fired him and am going for my initial evaluation with the new facility and doctors and I am looking forward to my quit date. I already have changed my diet, took me near a year to really see the change, lost a healthy amount of weight and have many changes to make yet in that area. I got myself a walker with a chair and am now seeing my leg muscles getting their strength back by taking walks. My primary doctor realized I was iron deficient and has me on iron and low on B12 and after 2 months already I no longer need to use my machine that makes 02 while in the apartment. I am so thrilled you shared what rehab brings. It is encouraging to me, brings me hope and yes I will be quitting the smoking I am looking forward to walks in the park, listening to the birds, going fishing and quality to my life even with the COPD. Thanks again for sharing your story.

    • Hi Celeste! I am so proud of you! You are taking such wonderful steps to care for yourself and improve your health. You have been so successful already! I know you can tackle the smoking too! You have such a bright future ahead of you. You go girl!

  7. Bob Z says:

    I have IPF. Diagnosed in July 2017 via lung biopsy. Best wishes to all of you on this site. Hope you all do well. Attitude is important.
    I went through Pulmonary Rehab for 10 weeks this Winter. It was quite helpful. Due to costs, I enrolled in a local YMCA with a really good Gym. I do the same exercises in the gym 3 days a week I did in PR, but for longer time periods. Pedal & arm cycle for 15 minutes, then weights for my legs: leg extends, leg presses and leg curls. Then 15 more minutes on the cycle. I measure O2 level every 5 minutes on the cycle with pulsimeter and keep O2 above 90 or I slow down. Use some hand weights at home just like in Rehab. It all helps!!! Exercise makes me feel good and gives me hope. I lost 17 pounds which helps the lungs and heart. God Bless all of you!!

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