Musings of a Marfan Mom

Exercise with Marfan

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It might surprise you, but exercise is really important to Marfan patients. Because we’re limited in our activities, it’s even more vital that we do what we can to stay heart-healthy. The information I’m providing has come from what I’ve been told by my doctors and what I’ve learned from the National Marfan Foundation’s website and annual conference. Any other sources are cited. To an extent, what activities are appropriate for someone with Marfan vary on an individual basis. By all means discuss any questions you have with your doctor and have real discussions about it, but remember what is ok for me might not be ok for you and vice versa.

Marfan does bring about some universal restrictions.

1) Contact sports should be avoided because of the risk of jostling the aorta and the head (which could cause lens and retinal problems). These include football, rugby, and even basketball (which carries the additional risk to the aorta of frequently stopping suddenly).
2) Isometric exercises, where you are holding your breath and straining, are quite taxing on the aorta. These include weight lifting, crunches, push-ups, and some forms of Pilates.
3) Any activity that taxes you to the point of exhaustion. There are two ways to define this. Marfs on beta blockers (atenolol, toprol) should keep their heart rates at 100 beats per minute or below; those not on beta blockers (like Losartan or verapimil) should keep below 120 bpm. The second way of knowing if you’re working too hard is to see whether you can keep up a conversation while doing the activity. If you’re too out of breath to get out a string of words, you’re probably working too hard.
4) Other questionable activities include roller coasters (risk to the eyes), rifle shooting (risk to the heart/aorta), volleyball (contact), and soccer (all of the above).

However, as I said before, there’s definitely variability. For example, soccer for 5 year olds is very different from soccer for 14 year olds. A patient without current aortic complications may have a little more leeway than a patient prepping for aortic surgery (keeping in mind, of course, that aortic complications may very well develop from repeatedly engaging in risky activities).

So, now that we’ve covered the “do-nots,” what about the “usually oks?” A variety of sports, when done in a mild to moderate manner, can be great. I swam in high school. Being in the water eliminated painful impacts on my joints and I found I was a natural at the breaststroke due to my long, hypermobile legs. I swam on the team, with heavily modified practices. I know a teen who was one of the top 25 youth archers in the country at one point. Tennis and golf can also be ok. Dr. Dietz said that even paintball can be alright, with the proper chest and eye safety equipment. The benefit of physical activities to our self-esteem cannot be overlooked!

As patients with a life-threatening illness, we have to measure the quality of our lives with the quantity of our lives. If your doctor wants you to give up something you love, don’t be afraid to have a frank talk with her. Maybe you can reach a compromise, like modified practices, or echoes every six months instead of every year. And if you can’t reach a compromise, and the activity really isn’t safe, at least you’ll know why and feel like you’ve been heard, whatever comfort that is. I hated giving up horseback riding and basketball, but I developed a love of writing and eventually came across swimming, two activities I might not have found otherwise.

Now, last week reader Erin asked me how I exercise, between the doctor-imposed restrictions and the restrictions of my own body, not to mention the time constraints associated with being a mom. I’ve written before about my chronic pain and the trouble I have breathing, due to my heart not processing oxygen quite right, and these have gradually gotten in the way of my ability to exercise.

But here’s the thing. I think that we need to be easy on ourselves and realize the best we can do is better than not doing anything. Right now, I’m doing physical therapy instead of going to the gym. I go to the hospital for this twice a week. Sure, it’s doesn’t necessarily get my heart pumping all the time (sometimes it does!) but it’s what I can do today. Eventually, it will help lessen my pain so I have the energy for other things. My therapist has done research to help me adapt the exercises to be non-isometric. On days I don’t have PT, I take the Menininho for a walk around our apartment complex or the local mall or, if he lets me, I do 20-30 minutes of the stationary bike at the apartment “gym.”

Beyond that, I schedule everything. I have my little icalendar on this laptop and I’m lost without it. Every doctor appointment, playgroup event, church meeting, phone conference, and errand gets recorded so that I don’t overextend myself. If I have a busy string of days, I take a day off as pajama day and the baby and I lounge around in our jammies all day long and read books and watch bad TV (well, I do, not him). It’s a system that’s worked out pretty well, as my pain flairs up when I’m overtired.

How do all of you (especially those of you with chronic illness) fit in the time to stay fit?

The opinions offered at Musings of a Marfan Mom are for informational purposes only and are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare provider with any questions you may have regarding Marfan syndrome and any medical condition. Never disregard professional medical advice or delay in seeking care because of something you have read here.

Citations:
Judge, D.P., and Dietz, H.C. (2008). Therapy of Marfan Syndrome. Annual Review of Medicine, 59: 43-59.

Ammash, N.M., Sundt, T.M., and Connolly, H.M. (2007). Marfan Syndrome – Diagnosis and Management. Current Problems in Cardiology, 33: 7-39.

Raanani, E. and Ghosh, P. (2008). The Multidisciplinary Approach to the Marfan Patient. IMAJ, 10: 171-174.

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4 Comments

  1. I too live by my schedule for everything: chores, checking e-mail, exercise, errands, baking/cooking, and rest. I find this helps me to really embrace my times of rest because I know there will be time for work another day. I don’t always follow it. For example, this last week most of my family, including me, has had a draggy cold–nothing serious, but enough that I have had to cut back on some regular activities.

    I have a friend with rheumatoid arthritis and one thing we talk about a lot is the guilt we feel when we take time to rest. We live in a culture that worships the energetic, multitasking mother. If moms are low-energy, then they need to lose weight, exercise more, or eat more nutritiously and voila, they’ll be fine! The truth is that with chronic illness you can do all those things and still live with pain and fatigue, and some of those things (like exercise) can even make things worse if you’re not wise about your choices. But it’s hard to believe that when you’re surrounded by women’s magazines and other moms who don’t understand that bodies do have limits!

    Hmmm, now I think I have a topic for my next blog post!

    Thanks for this post. Very helpful!

    [Reply]

    marfmom Reply:

    I agree that there is definitely an element of guilt. I try not to compare myself to other mothers, but it invariably happens. I also feel guilty when my husband has to pick up the slack around the house. I know what’s most important is whatever works for our particular family, but there are lots of times I feel I should be doing more of X or Y b/c I’m the wife/mother.

    [Reply]

  2. Wow girl. I love taking time to read other blogs because I think it makes me realize how grateful I should be for more simple things… The fact that I don’t have to worry about what sports I’m playing for one. You are a strong woman to take such good care of yourself and your family!

    Jeez, it’s hard enough for me to live my “simple” life! I mean… I thought it was complicated but you’ve helped humble me :)

    Rock on girl!

    [Reply]

  3. I just found your blog last week and love reading up on it. I too have heart problems (not Marfan’s or anything), surgery #9 coming up. and it sucks sometimes knowing that my husband has to help pick up the slack at home because i just don’t have the energy for it :(. So i know how you feel.

    [Reply]

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