by Carolyn Thomas ♥ @HeartSisters
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.
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(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
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See also:
Yentl Syndrome: cardiology’s gender gap is alive and well
What your cardiologist (should have) learned last month
Pregnancy complications strongly linked to heart disease
“Live a healthy life, then die quickly at 90″
The sad reality of women’s heart disease hits home
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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”?
Heart Sisters 
I love these articles and this one is especially interesting to me because the first time I heard heart disease applied to me, I was only 57 and really thought I’d be cured. If course it isn’t true, it’s gotten worse over only 5 years.
But what I will never understand is why people keep saying heart disease is preventable. No other problem is blamed so squarely on the patient as heart disease. I would love to see other people like me raise their voices to say this: I did not cause my heart condition!
I never smoked, never drank excessively, been doing deep meditation since I taught myself how at age 15, live a quality life with normal stress in a whole family, never suffered abuse, neglect or trauma; enjoyed an active lifestyle including swimming, dancing, kayaking and gardening; am well educated; had parents who lived into their 80s; never liked fatty foods, haven’t eaten red meat in 25 years, been vegetarian for 9 years, lactose intolerant so no dairy; never had high blood pressure or high sugar or high cholesterol!
So how on earth did i give myself heart disease (and COPD)?
I can handle the surgeries, the awful medications, the depression from watching my plannd life slip away bit by bit. I can handle being 62 and needing help for everything, like I’m 92. I can handle working twice as hard to do half as much. But I cannot handle being told or reading or seeing everywhere that I brought this on myself, that I could have prevented it, that it’s my fault! I used to find it insulting, then depressing, now enraging!
Not one of my friends with cancer has been told they caused it. Not one of my friends with depression has been told they brought it on themselves. Not one of my friends with dementia has been told their lifestyle is to blame, should have fixed that. Not one of my 2 friends with MS were ever told it was their fault they aren’t going to improve. Not one of my many friends with arthritis, psoriasis, or asthma has ever been told they gave themselves these problems.
I am now simply outraged that even the most well meaning “experts” continue to accept, preach and demand that heart problems are the fault of the user! A so-called healthy lifestyle does not guarantee a healthy life….and no one would bring heart problems on to themselves.
Stop blaming the victims and encourage others to stop this blame too. A lot of the unspoken depression, the heart patient PTSD, the not telling a doc one’s symptoms, the tears in the night, and the embarrassment to tell friends, as well as the lack of understanding in the healthy public would be relieved if we weren’t being criticized and blamed for something not our fault!
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Lyn, I just love your comments. I know you speak for so many others in the same boat. Our physicians will point to stats and charts and risk calculators that pinpoint certain risk factors that increase our chances of future heart disease, but these can’t explain patients like you. In fact, when I tested a new cardiac risk calculator the U.K. had developed for its NHS patients (answering each question exactly as I would have the week before my heart attack), the result was that, apparently, I could “expect to live to age 83 without a heart attack or stroke!” (under-estimating my actual risk by three decades!) And some significant risk factors in women that researchers have recently identified are ones we’ve rarely even heard of (e.g. pregnancy complications, shift work, etc)
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Great post, Carolyn! I’ve long been fascinated by why it’s so hard to nudge people to change their behaviors and develop healthier habits in light of the fact that our lifestyle choices (seat belts, smoking, diet, exercise, activity, stress management etc) have such a profound impact on our health.
Certainly convenience is a factor. It’s easier to ask my doctor for pills to treat my symptoms than it is to lay off the fettuccini Alfredo. This week I participated in a webinar on procrastination by James Clear and he offered an explanation I hadn’t seen before.
Among a group of people who all stated they wanted to adopt healthier habits (eat better and exercise), those who believed that their lives would be better after making these changes were far more successful in implementing new habits than those who believed they would not be better off.
If you fundamentally see yourself as a jolly fat guy and think your friends love that about you, it’s hard to change. If you believe that being healthy means endless salads and living at the gym, it’s hard to change.
Lastly, can I offer an additional bulleted item to your excellent list? Exercise, Exercise, Exercise is certainly crucial, but the weight of the research suggests that not being sedentary and sitting too much is also critically important. “Being sedentary is the shortcut to the cemetery“ is stark, but true. They are related, yet different. Exercise is intentional, usually time-based, and more intense. We need to exercise as well as sit less and move more.
Shameless plug: lots of ideas to beat Sitting Disease on “Quitting The Sitting”
Thanks, Carolyn!
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Such good points, Denise! I’ve written here previously about the differences between what social psychologists call “approach” goals and “avoidance” goals.
And an excellent addition to the list about NOT SITTING. Emerging studies on exercise are showing that the benefits of even high-intensity daily exercise cannot outweigh the harms of long uninterrupted hours spent sitting at a desk! That’s so discouraging (all those years I spent as a distance runner were also spent working in public relations, hunched over a computer working on multiple deadlines, all due yesterday! No coffee breaks, no pee breaks, eating lunch over the keyboard – day after day leading up to every big event! Crazy….
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Reblogged this on Nurse's Links to Resources.
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Thanks Beth! ❤
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Jetgirl, I have The Prince Harry and The Prince William of dogs. Great Dane/Lab mixes. They look like Polar Bears. I named them Polar and Bear. One is reserved and majestic, the other, goofy and popular. The only thing that gets more attention than them is my sun conure (the smallest of all parrots). Not only does Belle talk in a human voice, but she works with me full time, goes with me on errands, is a welcome sight in most restaurants, mail centers, schools, soccer fields and all drive thru’s in my area. She has a fetish for McDonald’s french fries and will travel down my arm to the drive through window to get her one french fry from the employee. Problem is when I go to the bank and the dry cleaners. They don’t have a french fry and it makes Belle really angry. She is free at all times and thinks it really funny to make Bear and Polar “sit” while she throws crackers at them.
I shared that, to say you are onto to something worth sharing. Animals can make a big difference in a persons life. They make you laugh, they make you love, they make you care, they make you happy, they extend life through unconditional love. They also make you exercise, convert your attention to positive things and they don’t care if you have a bad hair day. They do not care if you have hair at all. They don’t care if you are rich or poor, thin or fat. They love it when you sing and dance and never judge how bad you really are at both. They think all your jokes are funny, they don’t take control of the remote control, they are just happy to watch tv with you. They smile like a human and they cry when you cry. They extend life and give purpose.
Maybe we should create a pet calendar in honor of My Heart Sisters and have the proceeds go to a needy cause? I bet we are not the only ones with “celebrity” Pets. 🙂
I am also betting we and many others could contribute some pretty awesome pics of our furry and feathered friends.
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Had to share this! It is the 4th of July in Atlanta, Georgia and I, a single mother, am entertaining 4 teens (2 mine, 2 friends of theirs). I am prepped, I got the burgers, the hot dogs, the apple pie and the fireworks. I even got red and white blue napkins and plates that we will not use at the pool because it closed due to thunderstorms.
What did I get? I got 100% chance of rain that is keeping its promise. My daughter screaming, the ceiling is falling in from my upstairs!! – and every once in a while a thunder boom and a lightning strike.
Well, this would be a good break down moment, a lose it and fall to the ground and yell mercy! and I thought about that (I thought about it hard)… and looked at my kids who were holding their breath awaiting my big moment.
I said “Well, Looks like we got a water show and a fireworks display this year. Let’s get that grill in closer to the covered deck. My burgers are prepped and ready to go. I cannot stop or fix my ceiling damage until someone comes out tomorrow to fix it.”
I can go on with my 4th of July with my favorite kids. Ceilings can be fixed. Time with family: Priceless.
Happy 4th of July All 🙂
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Wow. Congratulations and thanks for making my day, Rachel, and Happy 4th of July to you and those kidlets!
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Too Funny JetGirl! I wish you were my neighbor, We would have loads of fun. I was told that if you go outside on a new moon and tell it all your woes, it will take them with it as it fades away. I tried it and it was free. Nothing went away except my thoughts of gloom and doom, because I actually laughed out loud at the thought of me in my back yard telling a full moon all my problems…
So, I guess in an odd sort of way, it kinda worked 🙂
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Well, I hadn’t heard of that one but I thought I should write it all down so that when the next full moon hits, I won’t miss any of my troubles.
I think it will take until the next full moon just to create the list!!
I did avoid the donut shop earlier but all of the patrons cheered me on when I came by with my dog at 0600. Oh no, they cheered my dog on, I think. He’s the Justin Bieber of dogs – girls and other people just flock to him!!
JG
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You have the Justin Bieber of dogs?!?
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Interesting topic! Ironically this has been my week of receiving (through TV, Social Media, Radio) “the get thin fast with this pill”, “Have the perfect body in only 20 minutes a day”, “Skin breaking out? “
For $39.99 a month some company will send you a monthly facial kit, that will break you out more than you started with. I watch in amazement. The last one I got was “Did you know the only thing on your entire body that cannot repair itself is your teeth?” Of course they went on to attempt to sell me on repairing what I can on their fabulous program.
I had to ponder that one and came up with the same conclusions I always do. The only people that will benefit from this are the people getting my money. Don’t get me wrong, there are some really worthwhile products out there and they really do work, just don’t fall into the ‘one pill will fix everything’ idea.
You have been wounded and your wounds will remain with you to remind you daily how important it is to live the happiest and healthiest that you can. If you are honest with yourself, you know what to eat and what not to eat. You know how much food is a good amount and how much is too much. You know exercise is good. You know stress can kill you and how to find ways to overcome it and deal with it. You know simplicity is better than complications. You know dealing with confrontations is a lot harder than surrounding yourself with nice people. You know when you are on the right track and when you have de-railed and you are fully aware that making the wise choices above will make a huge difference in just living or living well.
These things are not easy at first, but VERY rewarding the longer you stay with them.
I am grateful for this site. It keeps me strong, when I have a weak day.
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Beautifully put, Rachel. “…your wounds will remain with you to remind you daily how important it is to live the happiest and healthiest that you can…” Thanks so much for your wise words.
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Sometimes I wonder, just how fine the line is, between denial and giving up. Both are dangerous, and that middle ground, acceptance, can be very elusive for many of us.
There have been many myths surrounding heart disease…many are the result of Physicians either not taking the time to fully explain, or else deliberately withholding information the patient needs.
Passing the buck to others to deal with may be an easier path for Doctors to take, but it opens the door for misinformation, misinterpretation, and missed opportunities to get back in the saddle and stay there.
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Well said, Joanne. I’ve long suspected that because ours is an invisible illness, it’s far easier to avoid acceptance. If we had to wear a neck brace or leg cast, then everyday we would somehow learn to accept that this diagnosis is real. In my heart presentations, I’ve often had questions from heart patients in the audience which clearly revealed that doctors had NOT fully explained anything about their cardiac conditions, or that perhaps the docs had – but in jargon that was incomprehensible. Good article on this very issue yesterday from Reuter’s Ivan Oransky.
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Carolyn, Carolyn, Carolyn . . .
I’ve been praying over eye of newt, using voodoo dolls, and wearing crystals for 4 YEARS and you destroy it all in the seconds it took me to read this post!! Shame on you 😉
Leave a girl her fantasy that it really isn’t a disease, that it will be cured if she just finds the right combination of drugs/food/exercise, that she already has had her share of “bad” so nothing else can or will go wrong . . .
Crushed!! Another billion rounds with psych in my future . . . I sure hope he likes the boat I’m buying him.
So should I go out for an hour walk, or just walk to the donut shop this morning?
JG
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Sorry to do this to you, JG. But have you considered fairy dust yet?
XO
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I buy it by the truckload . . . Alas, to no avail. . .
JG
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It’s true… a downer. Some days I am in good spirits when I am around upbeat people who have had a HA/heart disease and get on with life cheerfully; then I remember I am not cured, never will be, will always have this albatross around my neck, then I sink down again. Woe is me after reading this blog… A sad reminder 😦
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I’ve used your discussion about the lack of a fair fairy in another group I am in where we were discussing family problems we didn’t create but are stuck with.
I cannot claim to have fully embraced the fact that better is not going to happen. Intellectually I know I will not be cured and I now have a cardiologist who is realistic when we talk but on a basic level, acceptance of my condition isn’t there.
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Hello paperpest – I wrote a couple years ago about the practical usefulness of denial as a self-protective tool, especially in early days when we’re trying desperately to make sense out of a diagnosis that makes no sense. And who knows? There’s a fine line between being realistic and being hopeful, a flexible line that can move back and forth a lot, and hope, of course, changes as time goes by. Sometimes what we hope for in the beginning (“This can’t be happening!” or “This treatment will fix me!”) morphs into hope about specific chunks of time (“I hope I can get through the birthday party without needing to go home early”) One day at a time, one step at a time, right?
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Yes, this reply blends with this morning’s goal which was to walk to my local senior center and participate in the aerobics class to the best of my ability. This meant sitting down, during some of the stand up exercises. We are having very hot weather, but I did achieve my goals. I went there and back without incident accompanied by a friend.
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And that’s also what I did this morning! Hurray for us! We did it!! 🙂
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