What really goes on in your friendly online patient group

by Carolyn Thomas  @HeartSisters   3rd in a 3-part series:

It turns out that online patient discussion forums may not all be the noble grassroots support groups that I once believed them to be. For example, unless they are small independent online sites, or have secure academic, government or clinical funding  (like Virtual Hospice, which operates its active end-of-life care community thanks to ongoing financial support from the Winnipeg Regional Health Authority and Cancer Care Manitoba), the site owners of most major online patient support groups are figuring out how to “monetize” their work. That’s how biz developers talk . . .

Make no mistake, my heart sisters: few online site owners (except for individual patients hosting those smaller private forums) are running a feel-good charity for us patients purely out of the goodness of their hearts.  Continue reading “What really goes on in your friendly online patient group”

A wife’s heart disease teaches her husband a big lesson

by Carolyn Thomas  ♥  @HeartSisters

Physician Dr. Robin Schoenthaler once wrote in a Boston Globe column that, instead of looking for men who like those long romantic walks on the beach at sunset, women would do well to picture how the man of your dreams handles things when you’re sick. In fact, her recommendation for ideal husband material is a man who will hold your purse in the hospital waiting room.

It can be rare to hear in person from men about what it’s really like to live with us while we’re living with heart disease. It isn’t often, for example, that our WomenHeart online support community of over 24,000 female heart patients on Inspire.com hears directly from a real live male. But when Steve Kirsche of Wethersfield, CT stopped by to write about his own perspective as the spouse of a heart patient, I asked him for permission to reprint his personal observations here for you. Here’s what Steve had to tell us: Continue reading “A wife’s heart disease teaches her husband a big lesson”

Are you the quarterback of your own heart health team?

by Carolyn Thomas

Karla Marburger is a self-described “Type A computer geek”, a Nebraska woman who is also a survivor of both congestive heart failure and acute renal failure at the age of 43.

I first met Karla along with 45 of our heart sister companions when we attended the 2008 WomenHeart Science & Leadership Symposium for Women with Heart Disease at the world-famous Mayo Clinic. Exactly one year after that amazing training experience, she announced:

“Today, I’m going to a bridal shower — my bridal shower. Two weeks from today, I am getting married to John!

When she first met John, she reported that she was concerned about how he would feel about dating someone with heart problems, someone with dietary restrictions that make it hard to go out to eat, someone who sleeps with oxygen every night, someone who is stubborn about protecting her workout time – and someone who was still healing emotionally from this experience.

“After 2-3 dates of watching me order my meals and scheduling our dates around my workouts, John started commenting on my healthy lifestyle. Not yet ready to trust him with the whole picture, I alluded to a ‘major lifestyle change’, but left it at that.”

But as their relationship turned serious, Karla knew that she had to talk to him about the full picture of her heart condition. She explained:

“He handled the conversation very positively. For John, my heart disease is not a blot on my future. Instead, he treats it as part of my life that has shaped the woman that I am today. And, we help each other by cooking and eating right.”

Karla has become a true expert in cooking and eating right, by the way.  Since her hospitalization in 2007, she has lost over 100 pounds as part of her heart-healthy lifestyle makeover.   Continue reading “Are you the quarterback of your own heart health team?”