Heart and Hemophilia

Standing on top of Chimney Rock, in North Carolina yesterday, I was a bit smug as I watched the skinny twenty-something-year-olds lying on their backs, catching their breaths. At 52, I think I felt pretty good after hauling up this 404 foot mountain in the 90 degree heat. But I took the back seat to friend Kerry Fatula, who forged strongly ahead of me. Cut me some slack: she’s 10 years younger, does running and karate, and has killer quads.

If you don’t think you ever have time to stay in shape, note that Kerry is the mom of four boys with hemophilia (three with inhibitors) and also is the executive director of the Western Penn Chapter of NHF. If anyone doesn’t have time it’s her, but she still makes the time to be in the kind of shape most of us dream of.

We were exuberant being outdoors, sweating like crazy, hiking, and taking in the stunning view of the Blue Ridge Mountains. Nothing like physical activity to clear your head, make your heart pound, blood race, and muscles ache. Coming down was even more challenging. Even the muscles in our toes ached! Kerry and I enjoyed this so much, we started making pledges out loud of all the things we would resume that we put on hold, because we had been “too busy”: rock climbing (me), karate (her), road biking (me), mountain biking (her), hiking (both).

And we both noticed as we strolled through the airports to get here, how incredibly overweight America is. As patients with hemophilia, being sedentary and being overweight are terrible paths to allow ourselves to take.

In “Heart Health and Hemophilia: A New Challenge,” an article found in Perspectives, a new program by Baxter, researchers once thought that the deficiency of factor VIII in hemophilia might actually protect people from cardiovascular disease. But this has never been proven, and instead hemophilia patients, like Americans in general, should seriously examine their activity levels and diet to ensure a healthy heart. As many of you know, about 67% of Americans are seriously overweight, and I wouldn’t even be so generous, especially as I spend time people watching at many airports. It seems to me that about 80% or more of Americans are overweight.

The article says, “For people with hemophilia who do suffer a cardiovascular event, invasive treatments can be more risky, so heart disease prevention is extremely important.” And while there are no specific guidelines for preventing cardiovascular disease in people with hemophilia, adults should approach prevention in the same way as people without it – by addressing modifiable risk factors through lifestyle changes, such as quitting smoking, eating healthy and controlling their weight. The American Heart Associations recommendation that cardiovascular screening begin at age 20. Great idea considering also how sedentary our youth may be living.

The article shares the story of 47-year-old Ron, who experienced an irregular heartbeat and unusually dangerous increases in his blood pressure: Upon arriving at his local hospital, Ron told the emergency room staff that he had hemophilia, yet they treated him like they would anyone else. “They even wanted to give me blood thinners,” Ron remembered. He started looking for a doctor with whom he’d be comfortable while keeping an eye on his blood pressure and heart rate.

Eventually Ron found a family physician that understands cardiac medicine and is eager to learn more about hemophilia. He was comfortable with his choice of a new doctor. “You should have your heart checked before you have symptoms,” Ron suggests. “It might not be as easy as you think to find a doctor who knows both cardiology and hemophilia when you need one.”

Ron continues to stay active. He loves spending time outdoors, including fishing and gardening.

Some people with hemophilia become sedentary and overweight because of their joint damage. Of course, obesity and a lack of physical activity are both major risk factors for heart disease. Get active! Walk, swim, do yoga… the more active you are, the better you feel, the less sugar you crave, the less you weigh and the longer you’ll live. See you at the summit!

(Parts of this blog are excerpted from Perspectives, an educational resource produced by Baxter, which provides insight into opportunities and challenges that are relevant to adults, featuring members of the community who share their personal stories. Reprinted with permission.)

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