This fall, I participated in the American Heart Association HeartWalk in Boston. This was significant for me on several levels: I did the walk with my two children, now 25 and 21. These are children I was not supposed to have— according to the doctors I had seen when I was growing up—because the stress of pregnancy and childbirth was considered too much for a heart compromised by Marfan Syndrome. But thanks to the skill and watchful care of a wonderful cardiologist, I was able to thrive through two pregnancies (with planned C-sections), and rejoice with my husband at the birth of our children, who are now well-launched in their own lives and continue to be two of the joys of ours.
The HeartWalk was also significant because I was actually able to complete two of the miles without pain—thanks to the benefits of “physical therapy boot camp” and my new program of regular gym workouts. Again, I feel as if I have “outwitted” some of the usual problems of Marfan Syndrome—joint pain— as long as I am faithful to the exercise routine. Walking that distance was meaningful for another reason: In 1995 I had mitral valve replacement surgery and woke up with half my body paralyzed by a stroke caused by a wayward piece of tissue that had lodged in my brain. I recovered by using integrative medicine (another story), so doing this walk without a cane or other assistance was particularly sweet!
Last—and certainly not least—my family and I walked on the HeartWalk team of the very cardiologist who, 30 years ago, heard and understood how important it was for my husband and me to have children, and who helped make our dream come true. Now, all these years later, here is the result. As I look back on the past 30 years, I realize even more how imporant it is not only to “own our health,” but also to find the right medical partners to help us.
Own Your Health 
Good for you 🙂
It is nice when you can give back to somebody who has helped you in the past, even if it was 30 years.
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There are two kinds of sick people. There are the kind that listen when their doctor tells them there is no hope, and so lose hope and give in to the ‘poor-little-me’s. Then there are the kind of people who give their doctor an ‘Oh, yeah? watch this!’
So perhaps, then there is actually only one kind of sick person. The latter isn’t sick at all. The latter is only challenged and from the challenge, greater health and happiness comes. Those are the kinds of people who should write their doctors a letter and say ‘Thank You for helping present this challenge. It was the greatest thing that ever happened to me’… and then to thank all the people that made it possible.
🙂
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Beautifully written, Meghan! Thank you.
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Thanks for this post. I have a big smile on my face.
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After wanting children ever since I was little and then being told when I was older that it’s not a good idea, dangerous etc, all the other negative things that can be said associated with marfans then it’s good to hear your story.A little bit of hope for me starting a family. Good on ya girl x
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Yippee thanx for sharing your story. That gives me some hope after all. All I have heard from doctors and cardithoracic surgeons is doom and gloom when it comes to me starting a family. I have always wanted children as far back as I can remember and being told that might not happen has broken my heart. Thanx for your beautiful and encouraging story. THANKYOU
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I had two children without even knowing that I have Marfan’s I was only diagnosed (two weeks ago) due to my eldest daughter’s (4yrs) health issues. Makes me think when I was having all those ‘blood pressure problems’ at the very end of my second pregnancy – I never even realised that things could have turned out SO differently.
These two girls are my biggest inspiration to getting myself fit and as healthy as possible and your post gives me the confidence to go out there and do just that! Thankyou
Lorna x
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