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How to stay active with PF
Pulmonary rehabilitation is recommended for most people who suffer from severe lung diseases such as pulmonary fibrosis. The video features a patient with COPD who explains that although her lung disease does make things difficult, her doctor advised her to try and do as much as she possibly can — even if it takes her a long time, or two or three tries to achieve it.
Watch the video here: How to Stay Active With a Lung Condition
What do you do to stay physically active? What is your doctor’s opinion?
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11 Replies
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I was diagnosed with IPI in March of 2022. Immediately started taking OFEV, 150 mx 2xd. I had had several years of breathing trouble and bad lung infections. I have a fear of using Ox and an aversion to breathing machines. I am 81, still very active, and consider myself stable — primarily because of pulmonary rehabilitation
Shortly after being diagnosed I saw a sign for a place called the Breathing Center. I inquired and found out all they do is pulmonary rehabilitation and that with a doctors referral it is covered by Medicare. The course is 22 weeks long with 2 sessions per week of 75 minutes per session. In addition to specific breathing exercises they work also on general physical fitness. I have now completed the course 5 times, for a total of 220 sessions.
In each session they have a series of breathing exercises you do 5 reps for each exercise. I am no longer enrolled in the course, but I do the breathing exercised 4-7 times a week, except when I do them I do 15 reps for each exercise. I do go to the gym 2 to 4 times a week and the first thing I do is my breathing exercises. When I don’t go the the gym I do them standing in front of the bathroom mirror – it takes about 10 minutes to do them
My Ox level generally reads 97-100. Last summer I flew to Greece (37,000 feet altitude) with cabin pressure about 8 lbs and my Ox level never went below 97.
I would encourage everyone with IPF to sign up for pulmonary rehabilitation. Also go to the gym 2 to 4 times a week. I am convinced that without pulmonary rehabilitation and going to the gym, I would, at this point in my life, be a housebound disabled person.
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Hi John,
Could you describe your daily breathing routine in a post?
Thx
Ken
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Hey John–Is the Breathing Center a brick and mortar place or is it an online place?
Thanks.
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Pulmonary rehab has been a lifesaver for me on multiple occasions, especially after an acute illness or exacerbation. My local transplant center offers a good pulmonary rehab program that I can do in person but if yours doesn’t or you aren’t close enough, there are some credible online options like: https://pulmonarywellness.org Check it out if you’re interested 🙂
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@Charlene Marshall – that’s a very good find. Thanks for sharing…
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I am a 78 yr old diagnosed 5 yrs ago with IPF. I enrolled in Pulmonary Rehab in August 2024. It consisted of 2 sessions weekly for 9 weeks (90 – 120 min each) . At first I thought it was unnecessary since I was fairly active even bowling . However one year later I am in bad shape and can hardly stand long. I believe my Dr will recommend another round of it and I’ll agree. If there is one theme that I hear it’s to stay active. So, go to that Rehab and learn techniques to help you breathe better. It’s also good for the soul to be in a group dealing with a similar issue.
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It will be 4 years since my initial diagnosis and I remain stable. I am quite active for my 85 years of age. I walk on the beach, do yoga, paddle around in the pool and exercise daily. I have no cough and feel good every day. I do get laser treatments on my lungs weekly according to the protocol of Dr. Andrew Hall. I also take pirfenadone. Not sure which one helps the most. I get a lot of nausea with the perfinadone. So, for me, life is good. I do keep a positive attitude.
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Here is routine used at the Breathing Center.
Start off by doing 15 minutes on a hand bike while sitting down. The take you BP and Ox at the beginning and the end.
Next do group stretches and breathing exercises. Each is done for 5 reps. The basic breathing exercises are as follows. Arms thrust out – lock your hands together, hold your hands to your chest and then thrust out, expelling air as your arms go out, and breathing in as you return your hands to your chest. Arms thrust upward — again clasp your hands together, extend your arms all the way down in front of yourself, then slowly, with your elbows locked, swing your arms all the way over your head, while breathing in, then slowly return your arms to the lower position in front of you, while breathing out. Hand on back of neck –one arm at a time — put your hand on the back of your neck — this will leave your elbow at about a 45 degree angle–move your elbow around where it is in front of you, then swing your elbow out to 90 degrees while breathing in, once it reaches 90 degrees swing it back in front while breathing out. Repeat for other arm. Side knee touch — while standing erect, with arms down by the side of your legs, lean over to your right side, tilting your body to the right at the waist, and touch the side of your right knee, exhaling as you bend to your right, and inhaling as you straighten up. Repeat for left side.
Then 15 minutes on a bike or treadmill.
Finally 15 minutes doing miscellanies exercises. Weight, resistance machines, yoga, etc.
For the actual breathing exercises the Breathing Center did 5 reps for each exercise, twice a week.
The Breathing Center course is 2 times a week for 22 weeks. I did the course a total of 5 times. Medicare will pay for the course.
I now go to a health club 2 to 4 times a week. The first thing I do when I walk in is get in front of a mirror and do my breathing exercises, except instead of doing 5 reps for each exercise I do 15 reps. When traveling I do my breathing exercises in front of the hotel mirror. I am now 81, and even though I have taken OFEV for the last 4 years, like most people with IPF my numbers are slowly declining. That is the bad news. The good news I do not need oxygen., My Ox level rarely goes below 97, I am able to continue to fly long hours (9-10) at 37,000 feet, travel, work out at the gym, and lead a normal life. I attribute a lot of my ability to pulmonary rehabilitation.
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Thank you for the breathing exercises! I’ve been in two different pulmonologist rehab programs and neither one provided that kind of information. Blessings to you!
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Staying active is truly the key. When we moved from the Philippines Nov 30, 2023, I had no O2 on the plane. Originally diagnosed Oct 2017 then age 67. Exercise is the absolute key no matter how much longer it may take. 6 months or so before we flew stateside, I started walking the stairs in our house and got up to 60 or 65 reps 6 days a week. Took me longer but it is was saved me from low O2 flying home.
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A tip that helps me stay active with IPF, especially in the harsh winter months in Canada, was buying a walking pad for my room! I’m able to just get out of bed now, transfer my oxygen source to something portable and do some walking in the comfort of my room and pjs. It was the best $200 I ever spent this year!
Char.
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