Wondering why treadmill/ exercise stress oximeter tests not done routinely?

[David Merrell]

Hi Larry

I am a 78 year old with IPF and was diagnosed in 2020. I am not a doctor . My pulmonologist told me from the outset to ensure I continued to exercise to help slow the progress of my IPF. My exercise primarily consists of getting out walking every day and the occasional trip to our gym to do some light weight lifting and stretching. I am not on supplemental oxygen yet , which is a blessing I think. But I am guessing if I did the strenuous exercise you say you do I would soon be in need of it. Your doctor is probably right that your strenuous exercise won’t break a limb but I don’t like to imagine the stress it puts on your heart so if you heard he or she correctly with the “ don’t worry” comment I believe , based on what I have been told , that you received bad advice. I have been told not to “ stress” the lungs and heart. When I walk I usually try to include some uphill climbs . However, when I am on the uphill portions I use walking sticks as they seem to reduce the stress and keep the O2 levels in an appropriate range . I also walk very slowly. On the “ flats” I do not use the poles.

I really hope that your strenuous exercise has not resulted in pulmonary hypertension as I am told by my pulmonologist that it is as bad as the IPF itself . I will look in to your recommendation on the oximeter that works while you exercise as mine also can only be read when I stop

Good luck

[Riley]

My husband’s doctor told him they have patients walk for 6 minutes around the office and take their oxygen levels. He said that is a good simple way to see if a patient needs oxygen.

[Sandyman]

Proper breathing techniques that I learned got me off oxygen. I was breathing through my mouth. I took classes for proper breathing and read a breathing book. Now, after an aggressive 6 minute walk my O2 is 95-97 immediately or within 30 seconds. My O2 would be terrible if I tried to do what you were doing.

Perhaps you need breathing techniques and normal exercise instead of Iron Man like training. Anything you can do to not have to take oxygen will be a blessing. I know it is necessary for a lot of our members but not everyone is on it. I have my O2 handy because some day I am sure I will need it again.

[stacet7189]

Can you elaborate on the breathing techniques you’ve learned, please?

[jonathan-poland]

Hi Larry,

First, get yourself into a Cardio-Pulmonary Rehab Program at you local hospital just as soon as you can. They will teach you the best way to strengthen your heart and your lungs and how much to push yourself. Exercise is the only way to strengthen your lungs and heart. Cardio exercise, like walking/running on a treadmill, is absolutely. Rehab will also educate you about why different activities (like climbing stairs or a hill) increases your heart and lung load, and how to anticipate how your O2 will drop, how to breath correctly, and how/what to eat. That education is in many ways more important that the exercise aspect. If you live in the United States, you health insurance or Medicare will subsidize the bulk of the cost.

Nothing will stop the progress of the disease. Drugs may slow the progress, but won’t stop it. Exercise will help you tolerate the damage as the disease progresses, but won’t slow the lung damage either. But your heart will definitely be stronger and be able to compensate for the weak lungs. And if you have pulmonary hypertension, it will help that too. (How do you know you have pulmonary hypertension? Have they done a cardiac catheterization i.e. angiogram? Do you also have coronary artery disease?)

Apple watch O2 sensors are not accurate. They are not designed for tracking people with diseases – only healthy people. They use a “reflective” technology that shines a light into your skin and reads the reflection. Hospital O2 sensors use a light that shines through your finger or earlobe (i.e. “transmitted”) from one side to the other and are less impacted by stray light and skin tone. And no O2 sensor is accurate in daylight unless the sensor is completely shielded from all angles – daylight is too bright and swamps the sensors. (When I take an O2 reading when I’m outdoors is use a device that has Bluetooth and displays on my phone; I keep my finger in a dark jacket pocket to prevent these problems.)

You are fortunate to be healthy enough to use a treadmill. Many PF patients are way past that capability. For this reason (and cost savings) the gold standard way to track disease progress is the 6-Minute Walk Test. Most everyone can walk, not as many can manage a treadmill. I have an 82 year-old friend w/ IPF who cant. And of course PFT’s are used because they can give a trained pulmonologist diagnostic insight – something that really can’t be gained from a treadmill test.

I wish you all the best. I’m ahead of you in disease progress. I use 8l of O2 on my treadmill & I’m sure I’m slower than you 🙂 Keep asking hard questions!

Jon Poland

ps I am not a doctor or an actor who plays one on TV.

[Larry70]

Thanks, everyone, for your comments and suggestions; much to take in. I spoke with my pulmonologist today and he agreed the pulmonary rehab would be helpful, especially since I will now require O2 with exercise. I will be getting a home and portable O2 concentrator next week.
I don’t have pulmonary hypertension yet, as far as I know – I did have a Cardiac Echo that was said to be normal not long ago – (however, they weren’t able to visualize the pulmonary artery for some reason – so I’m not sure how much difference that makes, you would think it might be problematic to get a definitive reading) I’m not going to stress over it though. I think my cardiovascular status is overall in pretty good shape – had a Coronary Artery Calcium Score (CT Scan done last year) that showed no calcium buildup in my coronary arteries – this test is how they found my Pulmonary Fibrosis. Hopefully, I dodged a bullet by finding out I need O2 with exercise in terms of reducing or postponing my Pulmonary Hypertension. I plan to attend the PF Warriors webinar on PH this Saturday – if anyone is interested, check out their website : https://pfwarriors.com/ you can become a member for free and then sign up for the webinar.

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[antny]

I recently finished Respiratory Rehab (RR) which was both comprehensive and enjoyable. It was 18 classes lasting 90 minutes each over 9 weeks . The enjoyable part was everyone talked frankly about their issues . The comprehensive parts were on breathing better and living better. Yes go to this RR and learn .

[bessey]

Hi Larry. I was diagnosed in 2020. Last year I realized my O2 sats were dropping while riding my stationary bike. I ended up doing both the overnight O2 Sat monitoring as well as the 6 minute walk test. I found out that at night, while sleeping, my sats dropped to the low 80’s. Also with the walking. I am currently using O2 at 2 litres at night and when walking, I have my Inogen concentrator set at 3. I am currently being followed by the lung transplant team at UCSF and they told me that you must protect your heart. If your sats drop while sleeping and/or exercising, your right heart will begin to fail plus pulmonary hypertension can develop. Please do an overnight saturation test because I’m pretty sure your sats are dropping. I am a retired critical care RN for 40 years. I walk at a fast pace every day for exercise and wear my O2. You want to protect your heart.

[Larry70]

Hi Bessey,

Sorry to read about your situation. I have an Apple Watch that I’m able to check my SpO2 during sleep – it occasionally has given a reading in the 80s but the vast majority of the time it remains in the mid-90s. I had an overnight oximeter test from the pulmonologist a several months ago that was a normal reading. My Apple Watch correlated fairly well with that oximeter. The oximeter I have now also correlates with the one used at the hospital when I had the treadmill oximeter test – so I feel like I can get a pretty accurate picture of what happens with various activities.

I’m not thrilled that the test showed I need to start at 4L O2 with exercise – I would have thought I’d start at 2L first. But, you deal with the hand your dealt. I got a pulmonary rehab referral which should help provide guidelines on the level of exercise and such that my situation needs. I was unsure if I needed this rehab at first as I’ve been very active with exercise before and also fairly knowledgeable about the disease already – I worked as a LPN for 25 years (Cardiac step-down unit – I stopped working as a nurse in 2000) and have done a great deal of research on PF since being diagnosed. But not having the practical experience of all the ins and outs of using O2 with exercise and other concerns I might not have a complete understanding of, makes me think it will be worth it, even if there are a few yawn-inspiring moments. Hope things go well for you and thanks for your comment.

[Sis]

Thanks to all of you for sharing your experiences. It helps me to read your information. I have been diagnosed with PF since August 2023 but do not know what type I have. My 02 levels have been steady until past 4 weeks. I was on 3 of my oxygen but have had to increase to 4 continuous flow. If I go without oxygen for just few minutes my oxygen can drop rapidly down into 60’s. This concerns me. I have also started having extremely bad coughing spells. I started rehab last week but was coughing so much I couldn’t go this week which disappoints me. My question to all of you is how am I supposed to exercise if my coughing is so bad when I do anything strenuous I have to stop. Worried about not being able to exercise and make myself better. Thanks for any suggestions.

[Larry70]

Sorry to read about how much your cough is limiting you and all. I’m surprised that you don’t have a specific type of PF diagnosed yet. Have you seen a ILD Center of Excellence pulmonologist yet? Or see someone who has expertise with ILD? You likely know how important it is for them to figure that out.

[Sandyman]

If you are on Ofev or the other drug, one possible side effect is a dry cough. I am not a doctor and don’t want to alarm you, but the current COVID causes a cough like symptom you describe. You should immediately consult with your doctor and get an aggressive program to help you no matter the cause.

[Fran Kakabeeke]

I’ve been diagnosed with PF since January 2023. My pulmonologist had me enter a pulmonary rehab program immediately. I continue twice a week with aerobic exercise and weight lifting. At first, I didn’t need oxygen but as I was monitored by the staff they noted that my oxygen saturation dipped below 87 and told me at that level I needed oxygen. Today I wear a nasal oxygen cannula at 2 liters when exercising on the bike and treadmill. I also wear it during extended walks with friends, three times a week, so I can keep up a greater pace. I didn’t get a prescription for oxygen until this past April. While flying to Boston from Chicago I began to have chest pain. My oxygen saturation on my Apple watch indicated a “high altitude reading” of 84. For the rest of the flight I used “pursed lip breathing”, a technique learned at pulmonary rehab. You use your diaphragmatic muscles with abdominal breathing. This kept my oxygen saturation in the high 80s for the rest of the flight. My pulmonologist recommended I use land travel on my return trip. Apparently the oxygen quality in the airplane is the same as standing on an 8000 foot mountain. Recently I flew again to Boston with my Inogen at 2 setting and had no difficulties. Although I have lost 13% of lung capacity and have a “severe reduction in diffusing capacity”, I’m considered stable and can live for many more years. I take a day at a time and enjoy my life. I’m one of five in my immediate family with this condition so my sister will be getting genetic testing in January. All of us grew up in a town with a cement plant that had fine cement dust in the air so the cause of our condition has not been defined. To all of you dealing with this condition you have my empathy and prayers.

[Charlene Marshall]

Hi @Larry70

Thanks for starting this thread!

Shortly after my diagnosis in 2016, I continued on with all of my sports/activities, including long walks and runs on a treadmill. As you can imagine that got harder with time and now I require 02 while using the treadmill but it’s still a very helpful form of exercise. As others have mentioned, pulmonary rehabilitation programs can be so helpful for those of us with IPF/PF. I’m glad your Pulmonologist agreed to this, and you’ll be monitored while doing exercise.

The dry cough can really be a pain when it comes to activity and it’s important to monitor whether it’s dry cough + low oxygen, or “just” a dry cough. For this reason, it might be good to exercise with an oximeter or like others suggested, an AppleWatch which can monitor your 02 levels. You’ll likely get someone tracking this in a pulmonary rehab program but I find it so helpful for my own reassurance to, that when I get winded and coughing, its not always because my 02 levels are low which of course can be dangerous.

I hope the pulmonary rehab program goes well and is helpful!

Take care,

Charlene.