Pulmonary rehab – wow or whoa

[jim-h]

Yes, I have attended pulmonary rehab. I have had IPF for 18 months and have been an athlete my whole life. I am on room air and 69 years old. I thought I was in good shape, playing high level pickleball 4 days a week. PR significantly increased my cardio/pulmonary capability. I highly recommend it.

[hi-c]

I have been diagnosed with IPF since 2017. I suffered an exacerbation in early 2023. I went on the list in mid 2023. I entered pulmonary rehab shortly thereafter. I was doing so well and got well enough to do my exercises without the assistance of oxygen. I asked them to test me and I was able to do everything well and stay above 94 on my O2. So I took myself off the list. I credit the team at my Pulmonary Rehab with my ability to be de-listed. I took up a gym routine and had been doing very well with no oxygen use. Early 2024 developed a heart issue and that set me back from my gym routine. Now using oxygen with exertion and planning to get back in the gym. Talked to my Pulmonologist and if I have trouble in the gym, I will go back to pulmonary rehab. I highly recommend giving it a try and push yourself if you can.

[bob47]

It’s definitely a GO!!!!

But you have to make sure that it is a true pulmonary rehab facility. The first one my husband went to was more like a heart rehab and they claim to be pulmonary rehab. We were fortunate enough to find an actual pulmonary rehab therapy place and they really did a nice job and it helps tremendously. After my insurance covered the limit For $30 a month I am able to go to pulmonary rehab and do the exercises that I was taught.

I recommended highly to everyone and anyone who needs pulmonary rehab

[Marfa]

I have attended Pulmonary Rehab and I’m glad that I did. I do have to say that their periodic educational sessions were geared more toward COPD patients than pulmonary fibrosis patients, but I still learned some things like how to deal with stress, diet, etc.

[Marfa]

Adding to my original post…I have attended Pulmonary Rehab and I’m glad that I did. I do have to say that their periodic educational sessions were geared more toward COPD patients than pulmonary fibrosis patients, but I still learned some things like how to deal with stress, diet, etc. I was able to strength my lung capacity and learned what exercises would help me the most. Because i was also dealing with some major knee issues (waiting for surgery date) I did not reach my potential but i learned the tools to achieve my goals. Today I’m doing 3 miles on the treadmill (with 3 liters of oxygen) and weight exercises 3 times per week. It has made a difference. Even though I am using oxygen outside the home and upon exertion I am less dependent within the home since I’ve been on an exercising routine. Bottom line I highly recommend it.

Good luck!

[JSR]

I was diagnosed with ILD about 2 and a half years ago. Luckily I was diagnosed fairly early. I immediately asked for pulmonary therapy. It was wonderful for me both physically and emotionally. My periodic testing showed that my benchmarks improved. When I started I was suffering from the initial gut punch of receiving the diagnosis. I was feeling very helpless. I was a victim of my disease. Pulmonary therapy showed me that there is a lot I can do to keep myself as strong as possible. I have managed to keep my condition stable and have much more hope for a long future. Definitely go for it!

[John J Harrigan]

I attended pulmonary rehab after being diagnosed with IPF in 2017 and catching pneumonia in 2020. I found it very useful, in part for the focus it put on cardio-vascular exercise. Also in part for the dietary class and background information classes that made it clear I needed a few lifestyle changes. I also liked interacting twice a week with other people who also had pulmonary or cardiac conditions.

[Joy]

I was diagnosed at age 57 with PF caused by Sjogrens Syndrome in 2019. I started Pulmonary Rehab in early 2020. We had a 7-week class, followed by optional maintenance classes up to 3 times a week. Some people have been in the maintenance program for 20 years! I am doing 3 times a week. It’s like going to the gym, but with the security of respiratory therapists to help monitor us and talk to us about what is going on with our breathing. When I started, I could barely walk on the treadmill and was on supplementary O2. Now I am jogging 2-3 miles on the treadmill and not on O2! I have learned how to breathe correctly, using the pursed lip breathing and diaphragm breathing. My large muscles, heart and diaphragm are strengthened so they can help me where my lungs cannot. I am hiking up mountains and even traveling to higher elevations with minimal use of supplemental O2! Not only has this program been a life-saver in my lung health and overall physical health, but we also have a social network, support group/educational meetings, monthly lunches and annual field trip. The social/support aspect of the program is invaluable and a critical component of being able to keep active for as many years as possible.

[Bette]

I went today for the 2 1/2 hour orientation after filling out pages and pages of questions. Then I was given another paper to sign. It stated that 12 weeks of 2 to 3 times a week were required plus 5 credits for tests and class. It also stated that if I did not complete the required 1 hour group exercise class my insurance would not pay. There is more that happened, just say, it felt threatening and uncomfortable. I canceled and left. There was no mention of nutrition or information. Twelve weeks is a long time, especially 2 or 3 times a week. This is at an accredited hospital cardiology/pulmonary rehabilitation unit. Was I wrong to leave?

[Samuel Kirton]

I was skeptical of pulmonary rehab, but I am now a believer. During the pre-transplant portion of my journey, they made me stronger. The team started by telling me they would teach me how to breathe, and they did. I completed the program and then continued the work on my own up to the day before I went into the hospital for a transplant. The strength and endurance I achieved in rehab allowed me to receive a bilateral lung transplant and be discharged from the hospital 10 days later. Post- transplant, rehab helped me heal faster while being mindful of the surgery I had just undergone. I urge you to reconsider.

Sam…

[susan-sorensen]

Diagnosed with IPF in 2022, it took a long while before my turn came up for pulmonary rehab, but finally it did last year. I began in May and my RT worked every angle to give me the maximum number of 72 visits (2x week.) We hadn’t gotten there when my last CT, followed by a PET scan discovered a fast growing adenocarcinoma on the right upper lobe, requiring removal. I’ve been in recovery since the surgery in November and just cleared to return to rehab therapy this week.

According to my surgeon and oncologist, the pulmonary rehab is the only thing that allowed me to undergo the surgery itself. I’m anxious to get back because my RT is a tenacious pitbull who has gone to great lengths to get me off o2 while exercising and I owe her a debt of gratitude for giving me back the strength and stamina I needed. I look forward to going back this week! Big WOW for me!

[chuckgalloway]

I’m taking Ofev, diagnosed in 2018, walk 2 miles 3 or4 days a week. I went through pulmonary rehab and was a little disappointed. There was some stretching and warm up then on to a rotation on a treadmill, bike, arm machine or Newstep working up to a 1 hr total exercise. Twice a week for 10 sessions, a 6 minute walk test before the first session and again after the 10th to measure the effectiveness but they never disclosed the results. I guess there was some benefit as my strength was a little better.

The best thing that I got was a device called “the Breather”. It’s an adjustable restrictive breathing device that helps strengthen the diaphragm and teach breathing using your diaphragm. Starts out easy but it does get much more difficult as you progress through the levels. You can buy them online.

I couldn’t take a deep breath without coughing but the Breather has helped a lot with that. I’m looking forward to my next testing to see if there is a difference.

[Libby]

I attended pulmonary rehab this past summer (June -August 2025). I found the exercise portion of the classes very helpful. But sadly, I think because of the more rural location of the hospital center, there were many others in the class who had very limited nutritional information…so that part of the class was not worthwhile for me. We’ve been eating a Mediterranean diet for years. I had to discontinue the classes in order to have surgery in August, but overall I’d say it really did help ingrain the breathing method in me! I find myself doing the pursed lip breathing all the time, even when I am not using my Inogen unit.

[julian]

Definitely yes! iit is mostly light resistance and some walking. very light exercize but you”re monitored. very important! I has helped me.

[John K. Grubb]

I was diagnosed 5 years ago. I signed up for a Medicare approved breathing class — 75 minutes twice a week for 22 weeks. Wow was I in for a surprise. At 76 I was still working out a gym and thought I was in good shape. I found out my lungs were in pretty bad shape. The breathing exercises were so effective that I signed up for the breathing class for 4 more times. A total of 220 75 minute sessions. I no longer go to the breathing class, but I exercise my lungs daily; instead of doing 5 reps for each lung exercise I do 15 reps, daily, at home or at the gym. I am now 81, have avoid having to use oxygen, and still fly international. When I fly I take an ox meter with me. The lowest ox reading I recently had is at 37,000 feet — it was 97.

[Mark maron]

Best thing i ever did,, Diagnosed 15 2016. 15ltrs 24/7 and transplant 12/23. Went through 5-36 week sessions of rehab and it allowed my core to strengthen greatly. In addition to 3x a seek for rehab i did 3 days a week of light weight training, My chest muscles strengthened greatly and my recovery was easy because of it. There is NO excuse for not going at all, and I went during covid and had to have a mask all the time, Your post transplant recovery will thank you for this.,, DONT MISS IT!!!

[MKE]

I am thinking that pulmonary rehabilitation should be the most important and earliest treatments offered to anyone with a pulmonary fibrotic condition, regardless of etiology and prescriptions.

Learning from therapists how to improve airflow for breathing and speaking seems like an obvious best practice that should be offered to all patients. Why isn’t it? No matter where one is on this journey, I urge patients to advocate for this. It certainly cannot hurt and some benefit for a patient’s current or future status could be helpful.

By the way, I am a long retired speech-language pathologist and we also received significant training in improving breath support. Breathing techniques are used with a variety of neurological conditions, voice disorders, and stuttering/fluency disorders. SLP’s are also trained in augmentative communication systems if that need should arise.

Many years ago I took a harmonica class. The instructor volunteered as part of a pulmonary rehabilitation program. If you are able, this is a fun and challenging way to increase breath support. I am guessing singing lessons would also be a worthy pursuit. Maybe swimming? A gentle yoga class?

[antny]

I’m 78 and diagnosed April 2020 with IPF. No symptoms til about 18 months ago and now weight loss and low energy. I went to Respiratory Rehab 2 yrs ago and enjoyed all 18 sessions lasting 90-120 min. The only point that I want to make is that it’s all about how you feel physically. It was easy when I went but now it’d be tougher. I’m lazy regarding exercise so I’m going to go again.