How Hard Should I Push Myself When Exercising With PH?

My doctor called me following my recent MRI and delivered mostly good news: Everything looks stable, and my right ventricle is slightly less enlarged than it was during my last MRI in 2018. However, I came away from the call feeling panicked because of a comment she made about exercise.

She asked me about my exercise routine, and I immediately grew cagey. I do a fair amount of exercise, and I’m always concerned that my doctors will think I’m overdoing it. I explained that I go to the gym and use the exercise bike and treadmill on low settings.

My doctor then commented that she doesn’t recommend letting my heart rate go above 130 beats per minute (bpm). I know my heart rate can easily shoot above this if I’m doing any sort of exercise or movement, and I had been pushing myself way past that with my current exercise regimen.

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I cycled through a myriad of emotions. My first reaction was fear. I thought, “Have I been exercising incorrectly the past four years? What if I’ve been making myself worse?”

I was diagnosed with pulmonary hypertension in 2017 and have received little guidance from my medical team about how to exercise safely.

I have written in previous columns that after my diagnosis, I became a recluse. I was afraid to do any form of exercise and put any unnecessary strain on my heart and lungs. My first cardiopulmonary exercise test showed serious signs of deconditioning from my lack of exercise. Essentially, I had become very unfit on top of my PH.

Because of this, I experimented with more exercise and began to feel miles better. My test results improved, too.

So, it feels counterintuitive to stop what I’m doing. I think my confusion is largely my fault. I’ve never been the best at asking follow-up questions during appointments. Some patients ask a million questions and want to learn everything they can. I’m more of the “hurry up and get me out of here so I can go back to my life” type.

I believe another contributing factor is that many medical professionals aren’t sure where to draw the line regarding exercise. I’ve received different advice from different practitioners, and this likely comes down to a lack of data. Research has shown that exercise can have positive results for PH patients when closely monitored. But as PH medications improve, and the reality of living with the disease evolves, it may be hard to draw conclusions about exactly how much PHers should be exercising and what the long-term effects might be.

So, what do I do? I’ve always trusted my doctors’ opinions, but this was the first time I felt like I also needed to listen to my body and reach a compromise.

I tried to exercise the way my doctor recommended, but I felt like I was barely moving and wasn’t remotely out of breath. I left the gym feeling like I might as well not have bothered.

Since then, I have tried to tone down my routine slightly and ensure I am never too breathless to speak normally, a helpful tip I learned from the Pulmonary Hypertension Association UK. I have also arranged appointments with my specialists to talk specifically about my exercise regimen.

Ultimately, exercising with PH can be confusing, so it’s important to advocate for yourself and get the advice you need.

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Note: Pulmonary Hypertension 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 Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

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