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.  

After that catastrophic heart disease diagnosis, the single, independent Karla never imagined that she would ever meet a man willing to take on the risks of a partner with known heart problems. She explains:

“And I did meet a few men who weren’t able to deal with that! Then, along comes this tall, distinguished, well-dressed man with intelligence and a sense of humor as warped as mine.”

Karla and our Mayo ‘grad’ sisters have kept in touch since our time in Rochester, Minnesota – so we were all vicariously thrilled when she told us:

“I am happy beyond belief!” 

After a fellow survivor wrote that she’d been trying to be “patient” while waiting for important cardiac test results that had been promised to her by her doctor weeks earlier, Karla responded:

“My cardiologist taught me one very important lesson.

“He stood by my gurney in the ER and told me that I was in a new game now. He said that I had a team of medical people on my team, but that I was the quarterback. If I called a serious game, the rest of team would be there for me. But, if I didn’t want to call a serious game, they couldn’t do much to help.

“Along the way, I have learned a lot about patience and forgiveness and grace …. mostly directed toward me.”

Karla hit the nail right on the head.  Every woman needs to be the quarterback of her own heart health team.

Whether or not you have a life-altering diagnosis like Karla and I do, you simply cannot afford to be the passive spectator watching dispassionately from the health care bleachers anymore.

As the QB, your job is to understand what’s happening with your body, including each visit to your doctor’s office.

This includes going through all test results with your doc (after you get your own copies – which are your right to request and own).  Go through these results line by line until you are absolutely comfortable that you understand each point.

You may not like knowing each point, but this is YOUR BODY and you do need to be the one in charge of knowing.

Online researching can also be very useful (but make sure you can tell the truth from the unadulterated trash out there!)

Being the QB of your health care team also includes being pro-active in getting your medical test results or concerns addressed. Women tend to sit impotently by the phone, waiting patiently, instead of “being a pest” (horrors!) by calling the doctor’s office every day, twice a day, until they get the answers needed.

Your heart health is far more important than any worries that you might be “bothering” them. It makes me cringe when I hear women say that they’ve been fretting for days or even weeks for the doctor‘s office to get back to them with important information.

PICK UP THE PHONE!  CALL THEM!

Physicians are just like the rest of us – they pay attention to what is right in front of their faces. So if they have patients who are willing to wait quietly at home without making a peep, they may let them continue to sit and wait.

It’s a sadly realistic reflection of how women are socialized in our culture (“be nice, don’t make a fuss, don’t rock the boat”) that we seem so oddly willing to silently wait and fret, rather than to take whatever action will get us satisfaction as consumers of a valuable product (in this case, the ‘product’ is our own health care!)

It is a very dangerous myth that “patience is a virtue” when it involves our very health. It is not.

I like to ask this question of my heart presentation audiences:

“Had it been my daughter Larissa complaining of the same debilitating heart attack symptoms that I was experiencing in May of ’08, would I have been reluctant or shy or timid about screaming blue murder to get immediate help for my child?”

Do you imagine that I would I be patiently waiting by the phone for a return call if it were my children’s medical test results we were waiting for? Not a chance.

Why do we not then demand the same excellence in care for ourselves?

If my children’s medical care was involved, I’d be just like Shirley MacLaine in that old movie “Terms of Endearment”.  Remember the hospital scene where she runs screeching into the corridor, yelling:

“My daughter is in pain!!!”

So why are we so reluctant to run, metaphorically, screeching into the corridor yelling on behalf of our own care?

Karla Marburger reminds us that it’s actually not about “screeching”, and that there are good ways to be a pest and bad ways. She adds:

“We want people to WANT to help us.”

Here are some of Karla’s helpful tips on how to be the quarterback of your heart health team :

• 1. Ensure that you understand the issue from the medical professional’s side. “Oh, you cannot help me with that? Who can? Please connect me.”

• 2. Ensure that you are understood. “So to review, you will call me in three days with those lab results. What is your name and extension for me to call if I don’t hear back from you?”

• 3. Don’t overwhelm the doctor with the online printouts from your Medical Googling. This may be perceived as insulting. Instead, Karla likes to reference the source (a credible one like http://www.mayoclinic.com) and the knowledge she gained there, without waving the ream of paper in front of them.  At first…

• 4. No perfect doctors. Karla explains that her own cardiologist is not the touchy-feely type. “He does not deal with my emotional issues well. But he treats me with respect, expects me to participate in my health, and cares about my physical heart health. My family physician is much more compassionate, so it is a nice balance.”

• 5. Know when to get hopping mad. “Know when to substitute a different player, and don’t be afraid of hurting someone’s feelings.”

In short, nobody else will ever care about your own health as much as you do. During any medical crisis, when so much around you may leave you reeling with uncertainty and chaos, being your own health quarterback can actually be an empowering place for you.

As my heart sister Karla herself has proven, knowledge is power.

And if you are a woman who is living with heart disease and are interested in becoming a Mayo Clinic-trained support group leader, find out more about applying to attend the annual WomenHeart Science & Leadership Symposium for Women with Heart Disease, as Karla and I did. This world-class training takes place every October at Mayo Clinic in Rochester, Minnesota.

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Q:  How have you learned to become the quarterback of your own heart health team?

See also:

• What I learned at Mayo Clinic was shocking (from the Sharing Mayo Clinic website)
• Your health care decisions: don’t worry your pretty little head over them
• Six rules for navigating your next doctor’s appointment
• Listen up, ladies: 16 things I’ve been meaning to tell you

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