How Hard Should I Push Myself When Exercising With PH?

Eleanor Bird avatar

by Eleanor Bird |

Share this article:

Share article via email
Banner for

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.

Recommended Reading
non-invasive tests/pulmonaryhypertensionnews.com/routine tests may predict severity and mortality

Routine, Non-Invasive Tests May Predict PH Severity, Mortality

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.

***

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.

Comments

Julia Taylor avatar

Julia Taylor

Hi Eleanor I was diagnosed with ipah in 2002. I am now 51 and have always tried to keep active and build up my exercise tollerance. I have stayed stable for many years now. Your MRI indicates that your pH has improved so to me that says what ever you are doing is not doing you any harm but is helping. This isn't suitable for everyone. Good luck.

Reply
Anastasia avatar

Anastasia

Hello, Eleanor! My name is Nastia, I'm from Russia, I'm 23 and also have PH with congenital heart disease. It would be very interesting to know what exercises the cardiologist advised you to do! I, too, have an ambiguous attitude to this issue, I want to give myself a big load - abs, round butt, elastic body, and not "just a physical therapeutic load." Our doctors do not recommend heavy loads, only physiotherapy exercises (which are usually done by grandparents). But what if you want to keep your body in a beautiful and slim shape?:D I wonder what your doctors think about this) Thank you for sharing your story!

Reply
Phyllis Brumm avatar

Phyllis Brumm

You might find this study from May 2021 of interest:
J Clin Med. 2021 May 9;10(9):2024. doi: 10.3390/jcm10092024.
High Right Ventricular Afterload during Exercise in Patients with Pulmonary Arterial Hypertension
https://pubmed.ncbi.nlm.nih.gov/34065097/
"Recently, an increasing number of studies have indicated the short-term efficacy of exercise training. However, considering the potential risk of promoting myocardial maladaptive remodeling, even low-intensity repetitive exercise training could lead to long-term clinical deterioration."

Reply
Nikole avatar

Nikole

I would recommend going through a Pulmonary Rehabilitation program. They whole point of it is to get you moving and help you find your equilibrium, how much you can do and how far you can push. I did it when I was first diagnosed. It really helped and gave me some confidence in exercise. However, since PAH is progressive, your exercise capability can also wax and wane. It's been 10 years since diagnosis and I'm starting to recognize a difference in my exercise capacity. My Dr. has offered to send me to Pulmonary Rehabilitation again if I want. I also use my oxygen levels vs. heart rate when it comes to exercise. Some exercises make my oxygen levels drop drastically while others I can do and maintain for periods of time. I've been told to keep my levels above 90 if possible but not to go below 88.

Reply
B J Seltzer avatar

B J Seltzer

What about Tai Chi? I have PAH with mitral valve problems and when I ask about exercise the answer from the doctor is “no stress on your core period “.

Reply
Hall Skåra avatar

Hall Skåra

I strongly agree with Nikole. You should join a rehab program. Make sure it is a PH rehab program, and not a regular rehab for heart patients. PH specialists will help you check and understand your exercise capacity. We are all individuals and PH patients are all very different. What is right for one patient, will probably be totally wrong for another.

I was diagnosed in 2005 and have, among others, joined the rehab program in Heidelberg, Germany. It is run by dr Grünig who is one of the leading specialists when it comes to PH and exercise. I was there for three weeks and was surprised by the low intensity training. I took an extensive test on day 1 and and new test on day 21. I was sure there would be no improvement because of the low intensity level during the three week rehab program. To my great surprise, I had massive improvement. I could bicycle at higher resistance than three weeks before, while my O2 was higher even if I was breathing in less air. My pressures were the about the same, but all other numbers had improved.

I have continued exercise on a daily level ever since. Please note, however, that when I use the term «exercise», it is not what a healthy person might think of as exercise. My daily training is walks with me dog. I walk twice a day. How far and at what speed I walk, depends on how I feel that given day. This is also an important point that we PH patients should remember. Listen to your body. If you are tired, do less. I you are full of energy, your intensity level can be higher. And if you are very tired the next day after exercising the previous day, you probably pushed yourself too much.

I also bicycle with my electric bike. It is perfect exercise for me. I can get far with it, I feel healthy as I bicycle as fast as a healthy person on a regular bike and I finally can let the electric engine give me more help if I get tired.

Furthermore, I do very light weight training in order to make sure that I don’t loose too much muscle mass.

So to recap, the important things to remember are:

- Train with low intensity, this is most suitable for a PH patient.
- Listen to your body. If you are tired, lower your intensity level or rest that day.
- And before you start any exercise, join a PH rehab and learn more about your capabilities and limits.

So I was diagnosed 16 years ago. At my last checkup, my exercise capacity was doubled of what it was when I was diagnosed. My capacity was even a little higher than what was expected of a healthy individual my age (which is 62). And I am still on mono therapy. Hopefully, my healthy lifestyle with healthy eating and moderate exercise + a medicine that suits me, has kept me in good shape.

Good luck!

Reply
Lisa Colgan avatar

Lisa Colgan

My doctor at Brigham and Women’s hospital has put no restrictions on exercise. The more exercise the better. I’ve done well for the last 6 years I feel because I’m exercising. New studies have shown a positive effect on PAH with frequent, moderate to strenuous exercise.

Reply
Mendo Bruce avatar

Mendo Bruce

I was told that as long as you can speak in brief phrases and carry on a conversation that way, you are not exercising too hard. I am 67 and also was given a 130 maximum rate. I found that very restrictive and spoke to my cardiologist and he prescribed a Calcium Channel Blocker to help lower my heart rate.
My Heart rate is no longer causing me to slow down, now it's just my dyspnea (shortness of breath)

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.