Tag Archives: aorta

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 Mother’s Eyes

Today starts 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.

So today, you’ll hear from my mother. Next Monday my brother is posting, and Mark will round out the series.

I’ve already written some about my mom, but as a quick intro, she’s a Brasilian immigrant, former dancer, and current PhD student. She raised three kids, four if you count my dad. And this is her story of my diagnosis.
There were a few things about 8 year old Maya that defined her: her love of everything having to do with horses, her skinny arms and legs, and her political activism (yes, even at age 8 she stood up for things, wrote editorials and kept an eye out for unfairness anywhere).

That my children were not athletic was not a surprise to me – after all, the apple does not fall far from the tree. However, Maya’s inability to do some of the most basic things (ride a bike, hit a ball, etc) began to cause me concern when it appeared that she lacked the muscular strength to do them. At her yearly check up I brought up my concerns to her pediatrician, who began to study and measure Maya as if he had never seen her before. He said to me, “I am sorry, I don’t know why I didn’t see it before,” and then he referred us to a life of doctor visits. First a geneticist, then a cardiologist, then an ophthalmologist, and so forth…

I have to admit that the magnitude of the diagnosis did not impact us for a few years. Maya’s condition was not straightforward, so the diagnosis was nebulous – maybe she has Marfan syndrome, maybe it is something else, in the meantime, we will treat her as if she has it. So, for the first few years we did not really think that she had Marfan, we just thought there was something amiss – something that needed caution and concern, but was not as scary as it appeared.

So, our biggest immediate concern was deciding what to do about horse-riding lessons. I was in favor of following the cardiologist’s orders to stop lessons, but Maya’s dad (a horse rider himself) did not want to remove the one activity that was central to her 8-year-old life. So, we let Maya continue through one more riding season. Luckily the horse cooperated until the last riding day of the season when he knocked Maya off and into a pile of manure.
The next year was a growth spurt year and Maya’s dad took her to her yearly doctor appointments. That was the end of horse riding. Maya’s dad was duly frightened by the aortic growth and the memory of the last riding day.

My fears over the next few years was less about what might happen to Maya and more about what was happening to her – she was becoming an angry child. I spent less time on potential problems and more time trying to figure out how to help Maya with the issues that were relevant to her 10, 11 and 12-year old world. This natural tendency to a pragmatic approach has been helpful to me and also to Maya.

I could talk about all the things we helped Maya try, but that is her story to tell.

For me, there have been moments when I shook my fist to the heavens, moments when I was sick with worry, moments when I was sad for all of the things that Maya would miss. There were days when I wanted to lurch out at indifferent (or even mean) middle schoolers, days when I wanted to be able to just go into a store and buy Maya a pair of pants that fit – right off the rack! There were frustrations, set backs, relentless doctor visits and the accompanying bills, and this persistent knowledge that my child is not like all of the other children.

However, I have to honestly say that while these feelings existed they did not persist – mostly we were busy living life. We focused on possibilities not impossibilities. Thus, when Maya could not ride horses, we said, “Ok, let’s see what you can do and let’s do those things.” Maya’s dad took golf lessons with her, we took her swimming, she rode her bike, and we went to art museums, libraries and on short hikes. We participated as fully as possible in every aspect of life. Emergency hospital visits sneaked in and forced us to pause, but once the scare was over, we plowed on. Worries about the future crept into our thoughts periodically, so we did our best to crowd them out with a busy and full life.

This is not to say that we stuck our heads in the sand and pretended that Maya was not affected. We became informed, we read and sought research and experts; we encouraged Maya to become informed, we were diligent about health care, we followed guidelines (sometimes too strenuously). Sometimes we made good choices (helping Maya find a support group) and sometimes we were over-protective. No one parents perfectly.

The bottom line is that we came to understand that we do not control some of the critical aspects of our health. Our behavior can affect our health, but we do not decide who inherits what genes, who develops what disease or all that happens to us. But we can control our responses. And for me, that meant that sometimes I just raised my arms, took a deep breath and rode life’s roller coaster with the wind in my face. After all, if Maya can manage so well, so can I.

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