Two ways to portray heart failure. One of them works.

13 Mar
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  EXAMPLE #1: Sisters and heart failure patients Shaun Rivers (left) and Kimberly Ketter

by Carolyn Thomas     @HeartSisters

If you were suddenly diagnosed with heart failure, you would first of all be utterly horrified by hearing those words “heart failure” – which brings me to the eternal question: when are cardiologists going to come up with a better name for this common condition in which a person’s heart has trouble pumping blood as well as it should? (See also: “When Doctors Use Words That Hurt“)

I hope that the second thing that happens after you hear those dreadful words is that somebody will immediately show you this beautiful photo (above) of twin sisters Shaun Rivers and Kim Ketter, both nurses from Richmond, Virginia.  They were each diagnosed with heart failure during the same week in 2009 when the twins were just 40 years of age.  

Now compare the twins’ photo (and its accompanying text from the American Heart Association) with something that I hope you will never, ever see upon hearing that frightening diagnosis:

 

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EXAMPLE #2:   from Canada’s Heart and Stroke Foundation

 

This was posted on Twitter by Canada’s Heart and Stroke Foundation.  The in-your-face approach typifies what author Michelle Landsberg once described as “our annual scolding from the Heart and Stroke Foundation.” 

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“Make death wait”

You may recall their controversial 2011 Make Death Wait fundraising campaign about women’s heart disease.  In those ads, death (bearing a man’s raspy and menacing voice) declares his love for women – older women, professional women, stay-at-home Mums – while stalking random women doing regular day-to-day activities and threatening things like: “You have no idea that I’m coming after you.”  As Marketing Magazine observed at the time, many people found that ad spot hard to watch.  The Heart and Stroke Foundation’s vice-president of marketing and communications for Ontario defended the campaign by explaining:

“We needed a message that was really going to hit people over the head with a two by four.

Not surprisingly (at least to anybody who has worked with Big City advertising agencies), Lowe Roche, the Toronto ad agency that created that 2011 campaign, claims that it garnered “phenomenal results,” including a 20% increase in donations to the Heart and Stroke Foundation.

Screen Shot 2016-03-12 at 7.03.12 AM.pngWhen I contacted the Heart and Stroke Foundation last month about their newest heart failure = death and disability messaging, I was told that the poster – and others like this cheerful one on the right showing a man slumped on a park bench – were developed for their 2016 Report on the Health of Canadians: The Burden of Heart Failure. So far, HSF has not yet responded to my February 22 follow-up request asking who their target market is for these images/messages, and if they had anticipated the reaction of those actually living with heart failure upon seeing them.

This comprehensive HSF report is depressing to read. Speaking of which, only one paragraph about depression linked to a heart failure diagnosis is included in the 12-page report. (After eight full pages, however, the report does concede that “people can learn to live active, healthy lives” even with a heart failure diagnosis).

But significantly under-reported is the fact that depression is common among those diagnosed with heart failure, affecting up to 40% of all such patients. As described by the European Society of Cardiology at last year’s conference, depression as a direct result of hearing this diagnosis is associated with:

  • loss of motivation
  • loss of interest in everyday activities
  • lower quality of life
  • loss of confidence
  • sleep disturbances
  • change in appetite with corresponding weight change

This depression-associated reality is important because we know that heart patients suffering from such symptoms are far less likely to take their prescribed meds, exercise, change their diet, show up for medical appointments and cardiac rehabilitation classes, quit smoking, lose weight, or be able to manage their considerable chronic stress.

Ironically, the lifestyle improvements listed above are precisely what the same physician who first drops the diagnostic bomb “heart FAILURE” upon them will likely be recommending in the very next breath. Depression is, in fact, associated with a five-fold increased mortality risk for heart patients.  See also: “When Are Cardiologists Going to Start Talking About Depression?” 

No wonder those men slumped in the wheelchair or on that bench look so awful!  If you knew your heart were “failing” and you’re headed to your own funeral, you’d feel depressed and awful, too.  And if you weren’t depressed when you  started reading this report, you certainly would be by the time you finished it.

Try to imagine for a moment how this “no cure” campaign makes existing or freshly-diagnosed heart failure patients feel.  And what other words might our doctors use to replace the hurtful words “heart failure”?  Legendary pioneer cardiologist Dr. Bernard Lown answered that question in this way:

Heart failure is not a diseaseIt’s just a description of clinical syndromes. A heart failure prognosis is no longer what it used to be; much of the damage that occurs to the heart may be reversible and the symptoms controlled over decades.

“Perhaps a better term would be stiff muscle syndrome.

Dr. Lown also suspects that instilling anxiety by deliberately using alarmist language like heart failure is sometimes what otherwise caring physicians may do in order to convey a sense of urgency, thus hoping to ensure that patients will comply with lifesaving recommendations. Even in non-emergency situations, he says, the physician may believe that these words are actually necessary to persuade the patient to accomplish what needs to be done to maintain health. But ironically, the very opposite outcomes frequently happen.

So, given the choice between the American Heart Association’s twin sisters and the Heart and Stroke Foundation’s old-dying-guy-slumped-on-bench-or-in-wheelchair images, which of these two awareness campaigns would you find most compelling?

Which one would motivate you to learn more about a serious health condition? 

Which poster would you put up on your staff room bulletin board?

Which non-profit organization would you be more likely to support with your donation dollars?

I’ll help you decide.  Here’s an AHA excerpt describing how Shaun and Kim are responding to their respective heart failure diagnoses:

“The sisters have joined a newly established team of American Heart Association Heart Failure Patient Ambassadors. The group offers support by sharing their personal experiences and information with the millions of Americans impacted by heart disease and stroke.

“Kim and Shaun also shared their story at The Saint Paul’s Baptist Church, having launched the AHA’s EmPowered To Serve initiative there three years ago. The program aims to improve health in multicultural communities by partnering with faith-based organizations.

“Along with providing medical care, the sisters have worked with church leadership to include healthier choices on the church café’s menu, such as baked or grilled chicken, fish and fresh vegetables. As Kim explained:

“We have people come and thank us because they had no idea they had a health problem. We’re ensuring spiritual health, but also the physical health of our congregation. It’s a huge responsibility, but we’re living our life with purpose.”

Thank goodness Shaun and Kim didn’t get the memo reminding them that the grim HSF reaper is hovering right outside their bedroom windows. Nor did the lively senior (also living with heart failure) who stands next to me in the back row of the gym during our Friday morning weight training classes. Too bad the Heart and Stroke Foundation didn’t choose to include a nice black and white illustration of her working out, or other heart failure patients living their lives and not just resigned to dying. . .

So there’s your choice: learn from, share and support an awareness and information campaign that features active patients like the twins, or put up the poster of the grey patients slumped in wheelchair or park bench, sitting around praying for a merciful death.

My question now to the Heart and Stroke Foundation about publicizing these images:

What were you thinking?

While we’re contemplating the possible answer to that query, please consider removing those grim messages from the 2016 report, and stop sharing the images on social media as if you believe they are somehow helpful to heart patients. They are not.

And while we’re all waiting for that, below are some non-inflammatory basics I call Heart Failure 101″. These facts won’t make patients want to slit their wrists if they happen to be among the 50,000 Canadians who are diagnosed with heart failure each year.

And no two by fours are required to understand them. . .

What is Heart Failure?

The heart is a muscle that works like a pump. Its main job is to pump blood throughout your body.

Heart failure occurs when your heart is no longer strong enough to provide your body with all the blood and oxygen it needs. This happens because your heart has become damaged or weakened. When this occurs, your heart works harder than normal and less efficiently. This increased effort can cause physical changes in the heart over time, such as thickening of the walls of the heart.

Heart failure does NOT mean that your heart will suddenly stop working or that you are about to die. It means that your heart has to work harder to keep the blood flowing to the rest of your body. It means the heart does not pump as well as it should. It’s sometimes known as congestive heart failure, and is the leading cause of hospitalization in people older than 65.

Cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, adds that the type of heart failure most commonly seen in women — known as heart failure with preserved ejection fraction — is caused by problems when the heart relaxes between beats, leading to elevated blood pressure that can cause the heart to stiffen.

What causes Heart Failure?

Most heart failure is due to coronary artery disease (the same issues that cause heart attacks). Faulty heart valves, diabetes, high blood pressure, or inherited conditions and genetics can also be risk factors. Some types of cancer treatment can also damage the heart and cause subsequent heart failure. 
 .

How is Heart Failure treated?

 Early diagnosis and treatment can help people who have heart failure live longer, more active lives. Not all conditions that lead to heart failure can be reversed, but treatments can improve the signs and symptoms of heart failure and help you live longer. Medications are usually prescribed based on the type of heart failure, how severe it is, and your body’s responses to certain medicines. Lifestyle changes – such as exercising, reducing salt in your diet, managing stress, quitting smoking, and losing weight – can improve your quality of life. People who develop severe heart failure may need oxygen therapy, procedures such as implanting pacemakers or internal defibrillators, or transplant surgery.
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You’ll enjoy better health if you learn as much as you can about heart failure, how to keep in good balance, and when to call your doctor.
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Sources: Mayo Clinic, Cleveland Clinic, Ottawa Heart Institute, National Heart Lung & Blood Institute

 

Q:  Can you think of better alternatives to using the term “heart failure”?

 See also:

 

36 Responses to “Two ways to portray heart failure. One of them works.”

  1. Diane Kern August 8, 2016 at 10:07 pm #

    I hate the term heart failure. My cardiac rehab nurses also hate the term. While in the hospital for four days after stenting, I saw that horrible commercial repeatedly on the tv. I’ve read that statistic many times since in my research. I have chosen to call it heart challenge. I think most people are up for a challenge, especially when the goal is a better and longer life.

    Liked by 1 person

  2. Kate Gilderdale June 22, 2016 at 5:33 am #

    I was incensed by the ‘last 10 years’ campaign. I’ve always supported the foundation, but that ad made me really angry and the message I got from it was, if you’re the guy on the right screen, it’s your fault you’re in this mess, but since it’s too late for you, maybe the implied stupidity of your lifestyle will save others from themselves. As for make death wait, it was truly creepy for all the wrong reasons, and struck me as incredibly condescending to women.

    To my mind, bludgeoning vulnerable people with fear tactics is not only sadistic, but can often be counter-productive.

    Thanks for a great column, Carolyn.

    Liked by 1 person

    • Carolyn Thomas June 22, 2016 at 6:30 am #

      Hello Kate! My thinking (as a longtime former PR person) is that Lowe Roche, their Toronto ad agency, came up with these edgy potential-award-winning awareness campaigns to shake the tree. Amid an ocean of public campaigns that people are just not paying attention to, finally we WERE paying attention to make death wait and other in-your-face awareness campaigns – even if that attention was negative! People talk about them, and let’s face it, people rarely talk about non-profit ads.

      But the bleak images in this Heart Failure report represent a new low: real live people diagnosed with heart failure are seeing this report and these images. It’s a deliberate strategic decision on the part of the agency that purports to support these patients – and completely opposite to the “twins” campaign in the U.S. By contrast, the HSF’s decision is insensitive and ill-advised…

      Like

  3. vaishali surapaneni June 12, 2016 at 7:26 pm #

    Thankyou for sharing this blog. It was very informative and I could see your perspective. It was motivating to educate ourselves better to manage heart failure.

    Liked by 1 person

  4. Irene March 16, 2016 at 10:27 pm #

    Thank you for your blog on this. I totally dislike many of the ad campaigns that Canadian Heart and Stroke association runs.

    I am not one who protests, but after their campaign about two years ago, I actually wrote to complain to them about the ads. I guess that another letter is now due! I think you wrote that they said it brings in more money in their campaign. Wonderful! Not.

    I know that they need money for research but how about the effect of their ads on the many people already with some kind of heart disease? And that number would include me. What a total lack of sensitivity.

    Liked by 1 person

    • Carolyn Thomas March 17, 2016 at 6:33 am #

      Hi Irene – you’re right, The Heart and Stroke Foundation (and all disease-based non-profits) do need money to provide research funding (and just to stay alive as an organization). It’s not the money raised through campaigns that is the issue, it’s the way that they and their ad agencies are deciding to “raise awareness” or seek the public’s financial help – on the backs of the very patients they want to support. It’s unfortunate and offensive.

      Like

      • Irene March 17, 2016 at 7:30 pm #

        Yes, it is unfortunate and offensive. It was the 2013 campaign that I complained about – what will your last 10 years look like? Incredibly offensive to those already experiencing heart disease.

        I find it incredibly difficult to support such an organization.

        I have just discovered Cardiomyopathy UK – what a difference both in terms of presentation of patients and in the kind of information they provide.

        Liked by 1 person

  5. Curious to the Max March 14, 2016 at 10:30 am #

    Re grim messages and messengers: Carolyn, I think it depends on the target audience. Unfortunately, shock is what gets our attention.

    Your readers don’t need any more shock as they are living with the reality of heart disease, but the majority of the population who is rather oblivious still does to take things seriously.

    No matter what the message – health, politics, humanitarian aid et al – fear and pain is still what drives the majority to act. Someday that will change (probably not in my lifetime . . .)

    Thank you for writing such thought provoking and informative blogs.

    Liked by 1 person

    • Carolyn Thomas March 14, 2016 at 12:56 pm #

      Hello Judy-Judith – thanks for your comments! They are reminding me of the awful real-life photos that are now being put on the front of cigarette packs in many countries. Now you’d think that any smart person who gets an eyeful of those gruesome images would quit smoking on the spot, but the opposite actually turns out to be true. A study published last year in the journal Communication Research found that pictures of diseased and dying smokers on cigarette packs do NOT actually stop smokers from lighting up. One significant reason for this is that “many smokers perceive them as threat to their freedom, autonomy or choice.”

      There’s also something the researchers call “psychological reluctance”, a personality trait that I’ve decided I likely have: it’s what “makes some of us more likely to resist ideas when we think that we’re being ordered what to do.”

      The difference between the cigarette campaign and the heart failure campaign is that if a smoker heeds the packaging message and takes a very specific action as a result (i.e. quit smoking) that person will gain the predictable health benefits of becoming a non-smoker. But I’m stumped at how reading the deliberately grim HSF report is intended to create a specific action among the public (especially among those already diagnosed with heart failure). Or is it merely my “psychologically reluctant” personality that’s getting in the way of my understanding this?! 😉

      Like

      • Kathleen March 14, 2016 at 1:39 pm #

        My own husband is a mild man who has never smoked in his life, and even he finds the tone of those anti-smoking ads extraordinarily annoying. He often says that they very nearly make him want to take up smoking, and that, were he a rebellious teen, he just might.

        Liked by 1 person

        • Carolyn Thomas March 14, 2016 at 1:51 pm #

          Ah yes. Perhaps your hubby, like me, has one of those “psychological reluctance” personalities. 😉 Exactly the opposite reaction hoped for by those who are genuinely trying to motivate behaviour change!

          Like

  6. Catherine Aumack-Bandy March 14, 2016 at 1:38 am #

    Carolyn,

    What an opportune time for your column. The commercial, “Keep It Pumping,” currently being played all over network and cable television by the maker of Entresto, is a disgrace. Nothing more. Nothing less. As I watch the oblivious man sitting in the chair as the room is gradually taken over by the flood of water into the room and only the man’s dog seeks higher ground; while in the background a male voice tells us:

    “With heart failure, danger is always on the rise. Symptoms worsen because your heart isn’t pumping well. About 50% of people die within 5 years of getting diagnosed. But there’s something you can do. Talk to your doctor about heart failure treatment options. Because the more you know the more likely you are to keep it pumping.”

    Nowhere is it disclosed in the commercial that this ad is from the maker of a new cardiac medicine purported to reverse Heart Failure and its symptoms. The company classifies the ad as part of a “disease awareness campaign.” And responded to criticism of the ad by saying it was designed to provide patient education and facilitate patient-physician discussions about Heart Failure treatments.

    They justify the use of a 30 year old statistic stating that “50% of all heart failure patients die within five years” by saying the stat is regularly used by the CDC and the AHA. Come on…. That number is not accepted as factual by any Heart Failure specialist I have seen or heard from. That statistic is from 30 years ago and does not take into consideration the new treatments available and the changing population afflicted by Heart Failure. They also completely ignore the role of Sudden Cardiac Arrest in Heart Failure deaths which have decreased with the development of both new age pacemakers and ICDs.

    Are you kidding me? Under the guise of its goal being to encourage Heart Failure patients to talk to their doctors about new and “better” medications to treat Heart Failure, the ad is obviously designed to play upon the fears of patients.

    The “facts” are inaccurate and the impact this is having on patients and their family members is a serious problem. I do not go a day without reading a post on Facebook wherein a member of one or another Support Pages for patients and their caregivers either cite the information from the commercial as fact, or come in a panic having just seen the commercial and fearing their imminent death.

    Why has this commercial not been taken off the television? Can someone answer me that? Why is a company, who developed the ad to increase sales of its product “Entresto” while it is still under patent? Where are the professionals, other than writing letters in Medical Journals and other places patients rarely access? Why aren’t they screaming that the commercial either give accurate information or be taken off the television? Why is it allowed to play on the fears of patients and their families? This is a disgrace. Not only should Novartis be held responsible, we should also hold accountable those who are allowing the commercial to remain in the public realm.

    Heart Failure patients have a tough enough battle. They should not have to be frightened out of their minds while watching their favorite television program.

    Liked by 2 people

    • Carolyn Thomas March 14, 2016 at 5:56 am #

      Catherine, ads like the Entresto one are indeed frightening, annoying and disturbing, but one thing they also are is absolutely legal.

      The U.S. is one of only two countries in the world (the other is New Zealand) where such Direct To Consumer prescription drug ads are still allowed. Until these DTC ads are banned (as they are here in Canada where I live), you’ll continue to see these and many, many others. Novartis spent hundreds of millions of dollars researching this new drug, which according to Forbes business writers, is destined to become a multi-billion dollar blockbuster drug for the company. Prepare to see even more TV ads like the ones you describe. This is simply business as usual for pharmaceutical companies in the U.S.

      But last year, in a significant reversal of their previous support, the American Medical Association urged a ban on this pervasive marketing practice – you can get more info here and support the AMA in this DTC challenge.

      That stat you don’t like (50% of all heart failure patients die within five years) is also quoted in the brand new 2016 Heart and Stroke Foundation report I mentioned in this post, so alas, it’s not old news. And the CDC quotes this stat based on 2013 studies, so again, not old news. What isn’t usually mentioned is that the vast majority of these patients are over 75, meaning they’re also subject to many other co-morbidities of aging that can affect health outcomes.

      My point here is the offensive scare tactics approach taken by Novartis and by the Heart and Stroke Foundation campaigns in how they choose to bring “awareness” to this serious condition. Frightening patients “out of their minds”, as you say, does not and will not motivate the very people they want to reach to follow medical recommendations to help manage the condition as successfully as possible.

      Like

      • Jenn March 14, 2016 at 4:45 pm #

        As a Canadian, I have not seen this ad, but it is particularly galling to me as it’s by Norvatis.

        In Oct 1998 I had to retire at the ripe old age of 46 due to Congestive Heart Failure, which got progressively worse until I had open heart surgery in December 2000 to have my mitral valve replaced. The pathology report stated that the damage to my heart was due to my having taken Sansert (methysergide), a Novartis drug for migraines.

        I had taken the drug as prescribed, which was according to the published protocol. Although I stopped taking Sansert immediately, the damage continued. My cardiac function once again began to deteriorate until I had my second open heart surgery in December 2011 to have my tricuspid valve replaced – with the same type of artificial valve as my bicuspid valve.

        Thanks to Sansert I have been on Coumadin (warfarin) for 18 years, with its attendant risks and nuisances. Thanks to Sansert, my lifestyle and expectations were made a mockery.

        Liked by 1 person

        • Carolyn Thomas March 14, 2016 at 5:26 pm #

          Jenn, a sad reminder that there is no such thing as a benign drug. I understand Sansert was discontinued from the market some time ago. It didn’t take me any time at all doing a search for methysergide to find warnings that the drug was known to produce valvular heart disease in some migraine patients. So sorry you were one of them.

          Like

  7. Jillianne Code March 13, 2016 at 6:08 pm #

    Hi Carolyn,

    A great thought provoking post. What the HSF and the AHA argue are really two sides of the same coin. Having been through this from beginning to end, happy that I can still speak after the end of my natural life – thank you heart donor!

    Both sides of the coin are, in fact, true. The word heart failure is a brutal one and one I have learned should really be used to describe a symptomatic ‘episode’ where your heart is weakened and you experience shortness of breath, swelling.

    Similar to “you are having a heart attack” is an episode you are in (you don’t remain in heart attack!), as “you are in heart failure” is an episode of your heart not pumping the way that it should. What most people have as a result of CAD/Virus/Genetic is cardiomyopathy which translated into laymans terms is a non specific ‘weakened heart muscle’.

    It is this term that should become more commonly used by the general public. It is true that there is no cure, but there are treatments that can help you manage – both medical and surgical. Which is what, I think, the AHA approach to awareness is looking at – along with addressing the stigma that cardiomyopathy and episodes of heart failure are only things that happen to ‘old men in wheelchairs’ (I was a young woman at 28 when diagnosed – imagine my own shock and depression that quickly followed).

    Where this disease is a very serious one, I am inclined to agree with you that a ‘shock and awe’ campaign of desperation is probably not the best approach. We want donors to the HSF and similar organizations to do so out of hope that what they are donating to has any real chance of helping.

    But, I am just a survivor.

    Thanks for the post and your continued education of the interwebs 🙂


    Jillianne

    Liked by 2 people

    • Carolyn Thomas March 13, 2016 at 6:46 pm #

      Hi Jillianne – so glad you took the time to leave a comment here. I was thinking of you and your own transplant experience when I first saw the HSF report/images. I hear what you’re saying – there’s a fine line between not wanting to sugarcoat the reality of any given illness and at the same time being sensitive to the debilitating “shock and depression” you describe that such reality can mean for real live patients. I do think that, regrettably, the HSF really missed the mark this time (not to mention even one word of the depression that’s so often linked with this diagnosis).
      Thanks JC…

      Like

  8. Joan Jahnke March 13, 2016 at 4:07 pm #

    Great article that helps patients get beyond term heart failure. A better term? Wait, I’m still working on chest pain! AKA accurate heart pain. No wait! We cannot be expected to know where our heart is…..silly me!

    Liked by 1 person

    • Carolyn Thomas March 13, 2016 at 4:12 pm #

      Hi Joan! Well, there’s “pain” and then there’s “pain”, right? I recall meeting women at Mayo Clinic in 2008 at our WomenHeart Science & Leadership training whose unique cardiac symptoms were all over the map (and definitely not those textbook Hollywood Heart Attack signs we think are typical) – signs like ‘upper lip went numb’ or ‘persistent cough’. Who on earth would suspect a heart-related diagnosis with weird symptoms like those?

      Like

  9. Kathleen March 13, 2016 at 1:08 pm #

    Stiff Muscle is exactly what I have: cardiomyopathy, and the good news is that my heart still is doing its job. That is, basically, with episodes of severe shortness of breath that alarmed this active and frequent exerciser enough to persist until I finally had an appropriate diagnosis.

    Different modes of action work for different people. I never did stop being active, but one dismissal after another made me too angry for depression. Denial seemed to keep my father going, though I wouldn’t recommend it. He certainly never exercised or changed his diet – much to my mother’s chagrin, and his children’s. But Dad kept doing what he loved and he died in his 80s, still an active member of the bar, more than 6 years after his congestive heart failure diagnosis. I’m not sure how many times he had the Last Rites during those 6 years, as I lost track after 12…

    Liked by 2 people

    • Carolyn Thomas March 13, 2016 at 1:36 pm #

      Hi Kathleen,
      YIKES! Twelve encounters with the Last Rites?! Your Dad just refused to go! I’m thinking that his denial might have turned out to be healthier for him (given his longevity) compared to the severe depression that so commonly hits those similarly diagnosed. I like your description of yourself as “too angry for depression” after so many misdiagnoses. Glad you finally got a correct one.

      Like

  10. Penny Carpenter March 13, 2016 at 10:15 am #

    My how I agree with your comments Carolyn.

    The scariest words in the world were “You have heart failure”. I was so shocked and thought to myself: Okay,that’s it, I am dying. What do I do now? What’s the point?

    I won’t go into details. Suffice it to say I plunged into a deep depression, the words heart failure,failure,failure ringing in my ears.

    The twins present such positivity. We NEED to know there is hope for a healthier heart, and so let us dwell on the success of that. It can be a mind game for those who have a not so healthy heart. Tell me the right words and I will fight for an improved status.

    I gave up when I first heard those words. I even told the whispering nurses in the CCU not to say “heart failure” when referring to me, I was scared enough already!

    I am sorry for the length of my comments, but this really hits home. By the way, I am celebrating (yes celebrating!) A year ago today I had open heart surgery. It has been a difficult journey, but one of increasing hope. Finally I could erase the word failure from my mind’s vocabulary
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    The Heart & Stroke’s fear-inducing campaign is shocking and in my view does more harm than good. Hope, positivity, change to a healthier lifestyle is the only way to go!

    Bless you Carolyn for your own inspirational role in all of this.

    Liked by 1 person

    • Carolyn Thomas March 13, 2016 at 12:45 pm #

      Hi Penny and thanks so much for sharing your own experience as a person who has had to hear those dreadful words out loud. And Happy Heartiversary to you today! A wonderful milestone – and may you celebrate many, many more!!!

      Like

  11. Sharon Bonin-Pratt March 13, 2016 at 8:58 am #

    Dr. Lown already presented a better term: stiff muscle syndrome.

    Nothing about failure, nothing so final.

    Thanks for an eye-opening article.

    Liked by 1 person

    • Carolyn Thomas March 13, 2016 at 12:43 pm #

      Yes, Sharon!!! “Nothing about failure!” I wrote more on this in “When Doctors Use Words That Hurt“.

      Like

      • jerzeycate March 14, 2016 at 1:59 am #

        Carolyn,

        If companies like Novartis (see Catherine’s comment above) in fact wanted to raise awareness and facilitate discussions between patients and their physicians about their heart condition they really missed the mark.

        When diagnosed (02/2013) after a virus (Coxsackie-B) attacked my heart , it left me with not only Heart Failure but an Alphabet Soup of other diagnoses. My EF was 11% and my BNP was 5000+. In a period of 5 (yes FIVE) weeks I had gone from walking 3 miles a day to not being able to go to the bathroom without assistance. I had developed COPD, Kidney Failure, and many other disorder/diseases because the virus had decimated the electrical system in my heart.

        A Cardiologist came into the room and told my husband (he all but ignored me in the bed) that “unless your wife has a Heart Transplant immediately she will be dead within three months.” When my husband asked the doctor what he recommended he said, “Take her home. Make her comfortable and get her affairs in order.”

        The first thing we put in order was to request that the bearer of gloom and doom (aka the first Cardiologist) never be allowed into my room again. We asked the PCP, “If I were your wife/mother daughter who (Cardiology wise) would you have me see?”

        It’s been three years and while they have been wrought with complications, there has been no Heart Transplant; I’m not even considered for a Transplant Evaluation. Along with very effective medication, excellent physician care and coordination of care, and the implantation of a then “investigational” device (Medtronic Quadripolar Viva S CRT-D) my EF is now in the “low normal range” and my BNP is under 50.

        Oddly enough, I am hearing great things from patients taking the medication being pushed by Novartis. Maybe, instead of showing a man drowning in his living room alone (except for his dog who has sought higher ground) they should show some actual patients whose hearts have been stabilized and they are living life again free from the symptoms and progression that used to automatically come with a diagnosis of heart failure.

        Liked by 1 person

        • Carolyn Thomas March 14, 2016 at 6:13 am #

          Wow, what a nightmare you survived! So glad you have defied that first cardiologist’s grim (and thoughtless) prognosis. When I worked in hospice palliative care, our docs used to teach workshops for other physicians called “How To Break Bad News” – that guy sure needed a class like that… And campaigns like the HSF’s “old guy slumped in wheelchair/bench” should be featuring patients like YOU instead! Best of luck to you…

          Like

  12. Quitting the Sitting March 13, 2016 at 8:56 am #

    At the risk of appearing blatantly self-serving, the sisters’ story resonates with me because it’s precisely the way I’ve chosen to frame Quitting the Sitting

    There’s a whole slew of adverse health impacts (heart disease, diabetes, and several cancers chief among them) we may avoid if we sit less and move more.

    But I truly believe these compelling facts aren’t enough to get people out of their chairs. Information alone doesn’t lead to change. Instead, I want to shift the focus to the many benefits of an active lifestyle. Active people feel better, have less pain, more energy, greater self-confidence, and most importantly, they tell us that they are happier than they were when they lived their life mostly in a chair. Sign me up for that, please!

    Our Life in Motion series highlights story after story of formerly sedentary people who are so glad they ditched that boring chair.

    We are always looking for more stories to share (and they are out there!) so I’d love to hear from those who have transformed their lives by becoming more active.

    Thanks!

    Liked by 1 person

    • Carolyn Thomas March 13, 2016 at 12:40 pm #

      Readers! If you haven’t visited Quitting The Sitting’s wonderful site yet, please do so. And if you are a formerly sedentary person yourself, share your own story to illustrate why you’re glad you started to move more. I’ve always loved this quote from the late tennis great Arther Ashe (useful when one is contemplating getting off that couch): “Start where you are. Use what you have. Do what you can.”
      Thanks, Denise!

      Liked by 1 person

  13. Quitting the Sitting March 13, 2016 at 8:27 am #

    Heart failure is a dreadful term.

    It’s not accurate, it’s terrifying, it’s depressing, and most importantly, it’s not going to give patients any hope or motivation as to how they can move forward. Would “weakened heart” be any better? At least that opens the door and dialogue to what a person can do to strengthen their heart and there usually are options in that regard.

    I doubt many people change their habits and lifestyle in response to what sounds like a death sentence. Information alone doesn’t change behavior. But when information is presented along with a path forward that is possible, productive, and within a person’s grasp, real change can occur. Information is the kindling, but hope and inspiration are the matches needed to light the fire of change.

    These two sisters and nurses have beautifully illuminated the path forward from heart failure. They are living proof that a happy, productive, and inspiring life is possible even after such a dreadful diagnosis. Not a death sentence at all but rather a wake-up call that changes are needed.

    Thanks for sharing their inspiring story, Carolyn!

    Liked by 1 person

    • Carolyn Thomas March 13, 2016 at 12:35 pm #

      Excellent points, Denise! I think you are 100% correct when you observe: “I doubt many people change their habits and lifestyle in response to what sounds like a death sentence.” I’m not a physician, but even I can figure that one out! It’s also why I’m so disappointed and horrified by this wrong-headed HSF campaign.

      Like

    • Eve Zavodnick March 14, 2016 at 7:30 am #

      In response to Carolyn’s suggestion, I like the name Weakened Heart better too. My heart is weak since I lost 65% of my heart muscle during my heart attack. As a “heart failure” patient, my heart has been described to be large, flabby and weak, not stiff.

      My Ejection Fraction ranges from 14-17 and, like the twins pictured in the article, you would never know how poorly my heart functions to look at me.
      I work F/t, intern at night and go to Grad School part time. I know that I’m pushing myself a lot but the goal is worth it. I try to keep somewhat active and despite not having time to incorporate exercise into my schedule, my docs think I’m doing fine. EF factor is just a number and someone with a 40-50 could act and look like the man on the bench and then there’s me who functions at a high level with such a low number.

      We have to be the ones to guide our own ship and determine our own course. We need to live our lives!

      Liked by 1 person

      • Carolyn Thomas March 14, 2016 at 7:40 am #

        YES! I love that “guide our own ship” metaphor, Eve. But first, patients have to be mentally and psychologically prepared to guide that ship, not deliberately devastated by a bleak prognosis that’s not going to motivate anybody to do anything other than pull the covers over their heads.

        I was so surprised when I first heard about people like you with reduced EF AND normal daily functioning/quality of life. The really good news (as I was just reading about in a 2014 paper published in the European Heart Journal) the “management of heart failure with reduced ejection fraction has improved significantly over the last two decades.”

        So why isn’t THAT the big headline message used in these “awareness” campaigns? Patients like YOU (and the twins!) should be featured in all messaging.

        Like

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