So a bunch of us, all heart disease survivors, were enjoying breakfast together one morning in Rochester, Minnesota. One of the women at our table looked up from her coffee and announced that, yes, even though she had survived a heart attack and subsequent open heart surgery, she didn’t really have heart disease anymore “you know, like the rest of you do.”
I looked at her and replied, in my most charitable tone:
“Honey, nobody gets invited to attend the WomenHeart Science & Leadership Symposium for Women With Heart Disease here at Mayo Clinic unless they actually have, you know, heart disease.”
Her attitude of denial, I was to learn later, is not uncommon.
I’ve observed over and over since that breakfast conversation in 2008 that many women who have heart disease often believe that once they’re successfully treated, their heart disease is “cured” and gone forever.
I compare that attitude to how I felt after I’d spent a long month in the hospital around my 16th birthday following a ruptured appendix and a nasty case of peritonitis. From the moment I was finally discharged from hospital (abdominal drainage tube still nicely attached), I can honestly say that I never again gave my appendix a moment’s thought. I never needed to. Ever. My appendicitis and its associated deadly complications were cured.
That’s acute medicine for you.
But heart disease is not an acute illness. Welcome to the wonderful world of chronic and progressive disease . . .
Cardiologist Dr. Stephanie Moore of the Heart Failure and Cardiac Transplant Program at the Massachusetts General Hospital Heart Center has also observed this reaction:
” One reason some women aren’t too concerned about heart disease is they think it can be cured with surgery or an angioplasty procedure and they won’t have to worry about it again.
“This is a myth! Heart disease is a lifelong condition and once you get it, you will always have it.”
And whether you have been diagnosed with coronary artery disease, a cardiac arrhythmia, spontaneous coronary artery dissection, a heart valve problem, a viral condition, heart failure, or are living with a congenital heart defect, this applies to you.
Here’s part of a conversation on Twitter I had with cardiologist Dr. John Erwin, governor of the Texas chapter of the American College of Cardiology at the time. We were pondering why it’s far harder to convince heart patients to make healthy lifestyle improvements post-diagnosis compared to cancer patients:
I recall a woman in one of my heart health presentation audiences telling me after the talk that she felt “so much better now” about heart disease:
“I used to be afraid of getting heart disease. But now that I see you here today – a heart attack survivor, walking, talking, looking perfectly fine! – I’m no longer worried anymore!”
Whoah! Remind me to go easy on the mascara and blush next time I speak. See also: “You Look Great!” And Other Things You Should Never Say to Heart Patients
As the eminently quotable Kentucky cardiologist Dr. John Mandrola once wrote on one of my favourite heart blogs:
“We urge patients to eat less, exercise more, and not to smoke.
“But when they don’t do these things, we still squish their blockages, burn their rogue electrical circuits, and implant lifesaving devices in their hearts.”
This is why our doctors are so keen on us making sweeping wholesale improvements to our lifestyle choices to lower our risks of developing heart disease – and even more so if we’ve been already been diagnosed.
That’s because one of the biggest risk factors for having a heart attack is having already had one.
In a perfect world, doctors tend to like the concept of “curing” disease. Even in the face of serious and incurable diagnoses, the subtle dream of a magical cure can live on. For example, consider Ellen Diamond and her recent essay published in Pulse: Voices From The Heart of Medicine.
Ellen tells the story of a day 14 years ago when she heard a doctor making a promise to an audience of patients just like her. Everybody in that audience was living with chronic lymphocytic leukemia (CLL). The doctor stood up and promised:
“Give me five years, and I’ll give you a cure!”
As desperately as she wanted to believe that promise, she recalls that she felt reluctant to pin her hopes on it. And 14 years later, she remains skeptical. Ellen explained that although she’s heard many CLL experts make similar predictions, no one with CLL has ever been cured despite great advances in research and treatment.
” I’ve never doubted the doctors’ sincerity and good intent, but at times I’ve felt quite angry at their willingness to raise their audiences’ hopes in this way.
“Given the facts, how can they make these pronouncements?”
Part of the reason, she believes, is that when doctors and patients use the word “cure,” they mean very different things.
As a patient, Ellen defines “cure” as the moment when she’ll be told that her CLL has been destroyed, never to return. But in reality, she adds, the best treatment outcome is simply a kind of détente.
As a heart attack survivor, one of the Big Lessons for me has been that although my doctors, as Dr. Mandrola likes to say, can “squish, burn and implant” all they like, their heroic efforts do not address what originally caused this damage to my coronary arteries in the first place. And we now know that most heart disease is 20-30 years in the making.
Most of you coronary artery disease patients may believe that the life-saving cardiac intervention that you had was, well, life-saving. In most cases, however, evidence suggests that the best your procedure could likely do was to relieve your cardiac symptoms – not the root problem that originally caused those symptoms, and not your risk of future heart attack. Your procedure addressed only tiny specific areas of identified damage, not the overall health of your heart.
In coronary artery disease, the care model is arguably built entirely around opening blockages in patients with late-stage disease, which may relieve symptoms but does not prevent future heart attack.
The landmark research of Germany’s Dr. Rainer Hambrecht in Germany found that patients with significant coronary artery blockages actually do better in longterm follow-up studies when they participate in regular exercise programs compared to those having invasive cardiac procedures done to help revascularize those blocked arteries.(1)
Some celebrity doctors – notably Dr. Dean Ornish – believe that a highly restrictive, extreme-low-fat diet regime (no meat, no eggs, no dairy, no added oils) can prevent or even reverse heart disease.
But many other docs, including Dr. Timothy Harlan at Tulane University School of Medicine, remind us that what we eat is just one of several important risk factors in developing heart disease. And he disagrees with extreme diets:
“Is this healthier than the widely recommended heart-healthy Mediterranean diet? Probably not. The research is clear that extremely low-fat diets do not prevent heart disease. In fact, due to the extreme nature of the regime, this diet may actually be harmful.”
The key point here is that, no matter what miracle “cure” you hear or read about (including the beaut last week about how a tablespoon of lemon juice every night will “prevent heart attack”), it is ultimately up to you to do all that you possibly can to minimize your own health risks.
No pill, no diet, no supplements, no health guru, no miracle cure as endorsed on the Dr. Oz show will do this for you.
Remember that group of heart patients having breakfast with me at Mayo Clinic back in 2008? In our training group of 45 women, some were vegans. Some were triathletes. Most had survived more than one cardiac event. One was a physician herself. The youngest woman attending that year was just 31 years old.
While existing cardiac treatments certainly cannot promise to “cure” heart disease, there is some encouraging news here: heart disease can be largely prevented in the first place if you’ve never had it:
- Eat a heart-smart diet.
- Exercise, exercise, exercise!
- Learn how to improve how you react to stress.
- Do more of what you love doing, and far less of what you don’t.
- Develop healthy sleep habits.
- If you have diabetes, you need to manage it well.
- Absolutely no smoking.
- Know/keep your blood pressure/cholesterol numbers under control.
- Pregnancy complications are strongly linked with future heart disease – monitor your cardiac health indicators throughout.
- If you have a family history of heart disease (mother or sister younger than age 65 at the time of their cardiac event, father or brother younger than 55), it’s especially important for you to manage all of these risk factors.
(1) Hambrecht R, Walther C, Möbius-Winkler S, et al. “Percutaneous coronary angioplasty compared with exercise training in patients with stable coronary artery disease: a randomized trial” – Circulation 2004; 109:1371-1378
NOTE FROM CAROLYN: My book “A Woman’s Guide to Living with Heart Disease” reads like a “best of Heart Sisters” blog collection. You can ask for it at your local bookshop or public library, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
Q: Have you been shocked to realize that you actually do have a chronic disease that isn’t “fixed”?