Tag Archives: sports

Exercise with Marfan

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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Marfan Through A Brother’s Eyes

Today is the 2nd installment of a three-part series: Marfan Through the Eyes of the “Unaffected.” You’ve read my story, but what about how Marfan has affected those around me?

Over New Years Mark, the baby, and I met one of my college girlfriends and her fiancée for lunch. This friend has chronic pain, worse than mine, and at one point during the meal gestured to her fiancée and remarked “Yah, I don’t even know why he’s marrying me!” Her fiancée pointed at Mark and said, “Well, he married her!”

And that got me thinking…why did Mark marry me? [I mean, besides love and all that jazz.] How did he/does he view Marfan that makes him want to stay, when it’s made other guys run away? And from there, I wondered about the effects on my other family members growing up. Aside from the medical bills (OH, those bills!), we never really discussed the impact my illness had on them.

Last Monday you heard from my mother, and today my brother Matthew writes. My husband, Mark, will round out the series next Monday.

Matt is currently teaching 4th grade in New Orleans as part of the Teach for America program. He writes about experiences at the blog Relentless Pursuit of Acronyms. In his “other life,” Matt is a Blues musician and sports journalist.

Hi, I’m Matt, Maya’s kid brother. Unlike my sister, I am neither a mother, nor do I have Marfan. I’m 5’10, play basketball a few times a week, and can’t do any of the bizarre hand tricks that Maya can do because she has a zillion more joints than me or something. Despite me not displaying any of the physical traits of Marfan, I think its fair to say that my life has still been touched by the long, boney finger of the syndrome.

I was 6 (Maya was 8 ) when she was diagnosed with Marfan. I’d like to say that I never thought there was anything different about Maya growing up, but that just isn’t true. She was 5 feet tall when she was 8, which to me, meant she was about 13 feet tall. Despite the fact that she was alarmingly skinny, I assumed that she was going to up to be a professional basketball player, and launch our family (or at least me) into fame and fortune. I remember looking up the tallest woman in the book of world records, and then trying to estimate how long until Maya passed her. How would it be to be the female Shaq’s little brother?

Pesky details like enlarged aortas and dissection dangers didn’t really mean much to Little Kid Matt. Heck, I couldn’t tell my aorta from my armpit. I figured that since my older sister was huge, that she must be good at sports. Being a hyperactive little boy without any neighborhood kids to play with, I would insist that Maya come out and play whenever possible, much to the chagrin of my parents…and probably Maya now that I think of it, since she would have rather stayed inside, doing boring things like reading.

My parents tried to explain that Maya couldn’t be subject to the same kind of roughhousing that might be okay for other kids, but I couldn’t ever understand why…only that she had some sort of vague medial problem that gave her a huge scar on her tummy, and now she couldn’t burp.

I think Maya might have used this for leverage growing up. If we got into a fight, Maya knew that she could smack me, but I could never physically strike back. I grew to resent this a little bit. So she was tall and skinny, and she could make her fingers do this disgusting snapping sound…but from the looks of it, there wasn’t anything wrong with her right? She couldn’t be so sick that a smack in the chest could actually seriously injure her, right?

I think I started to understand things a little better when I turned 11. First, I finally studied the human body in school, and realized just how important all those parts of the body that we couldn’t see are (like the heart). Second, one of Maya’s close friends passed away due to complications from Marfan. In addition to getting an uncomfortable reminder of the mortality of humans at such a young age, the possible severity of my sister’s disorder finally sunk in. This wasn’t just something that Maya might use to get an upper hand in a fight…this could actually kill her. I remember thinking about this at night that year…wondering if something like that could ever happen to my sister.

The event was tragic, but had a silver lining, as it brought out the activist in Maya. Determined not to let something like this happen to her (or frankly, anybody, if she could avoid it), she decided to become an expert on Marfan. This meant that everybody in our house needed to become an expert too. Sure, there were times when I quite frankly did not care what possible connective tissue disorders King Tut or Abe Lincoln had…but deep down, I was impressed at how Maya chose not to mope around, and take charge of her health, even when she was quite young.

Growing up with a Marfan sibling wasn’t always easy, but we made it through pretty well by following a few simple rules. We, as a family, had many conversations about exactly it meant (and didn’t mean) to have Marfan (Matt, your sister isn’t crippled…she just isn’t going to be able to play Rugby with you in the backyard). We had a pretty strict rule about not mocking Marfan, although we weren’t so uptight that we completely lost our sense of humor over it. As siblings, we tried to find mutual activities that we could all participate in, and a lot of the time, I forgot that Maya even had Marfan.

That is, until she started doing those gross finger tricks again.

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A Point of Pride

There are two irrefutable rules of high school:
1) Most teens want to be like all other teens (although they won’t outright admit to this) and
2) Athletes are the least likely group on the adolescent food chain to get pushed into trashcans.

And so it shouldn’t be a huge surprise that my sophomore year of high school I decided that it was my life dream to join the swim team. I was jealous of all the swimmers and their coordinated clothing days before meets, worn so that everyone knew they were part of a Team (besides, one time of being in the trashcan was enough for me!). My friend Roxana encouraged me to join her on the team.

Which brings me to two important facts about me.

1) I didn’t know how to swim.
2) I had very little shame.

I told my mom that I wanted to sign up for swim lessons, and then met with my cardiologist for clearance. When the night of my first swim lesson came, I was ready.

One-piece, grandma-shaped swimsuit? $20.

Neon yellow nose plug? $5.

Realizing my lesson was at the same time as the school team’s practice, on the other side of a full-length glass wall? Priceless.

My entire lesson I prayed no one would recognize me practicing putting my face in the water with the 8 year olds. No such luck. Mom begged me to quit after that first class, before I embarrassed myself further, but I was determined. Like I said…no shame.

The humiliation paid off and junior year I did indeed join the swim team. Physically, it was one of the hardest things I’ve done. It was the first time I was allowed to play a sport (albeit a very modified one) and I struggled to learn new skills that come easily to most people, like measured breathing and diving. But I kept at it because I was so excited to be on that team, bucking my old doctor’s prediction that I’d have to live a life of inactivity.

And you know what? I dropped 42 seconds from my 200-meter breaststroke that first season! At the end-of-season team banquet I was awarded the Most Improved trophy. That trophy is one of my most prized possessions and I keep it on a shelf in Menininho’s room. To me, it is tangible proof that with hard work we can accomplish almost anything we set our minds to.

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Head on over to MamaKat’s for her weekly writer’s workshop; I’m doing prompt #1 today!

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