Key recommendations to improve outcomes for women living with heart failure

As part of WomenHeart: The National Coalition for Women with Heart Disease’s national patient education campaign on heart failure and women, the organization has just released findings from its first national research on heart failure and women. Heart failure is the leading cause of hospitalizations in women over the age of 65¹, and women account for 50 percent of all heart failure-related hospital admissions² yet only 25 percent of women are involved in heart failure research studies.³ Women with heart failure tend to experience a greater burden of symptoms, such as depression, and a reduced quality of life, compared to men.

In November 2014, WomenHeart introduced a national patient survey designed to gain a better understanding of how women are managing their heart failure. Additionally, between November 2014 and April 2015, WomenHeart also conducted two telephone focus groups and two in-person patient roundtable discussions composed of women heart failure patients to learn how heart failure affects women’s health and their lives.

Research participants identified key areas where improvements are needed to help them manage their heart failure:

  • Reduce misdiagnoses of heart failure in women, which are preventing or delaying proper treatment
  • Address mental health issues associated with heart failure
  • Enhance patient education for women heart failure patients
  • Remove barriers to cardiac rehabilitation
  • Improve access to support groups for women heart failure patients
  • Improve two-way doctor-patient communication
  • Expand access to insurance coverage
  • Provide information to women heart failure patients on how they can get involved in heart health awareness activities

After reviewing the results of the heart failure survey, patient roundtables, and patient focus groups, WomenHeart conducted a Key Opinion Leaders work session to come up with recommendations to improve diagnosis, care and quality of life of women heart failure patients. The following top recommendations came out of the Key Opinion Leaders work session:

  • Physicians and other health care providers should receive continuing education that includes sex and age sensitivity as well as cultural competency, listening skills, and a holistic approach, so they can better address the specific medical needs of women heart failure patients – including their unique mental health needs.
  • Medical school and residency training should be modified to build communication skills to improve doctor-patient communication.
  • Health care providers should encourage their women heart failure patients to participate in pre-clinical and clinical research studies to ensure that medicines and devices used to treat women with heart failure have been tested in women.
  • Physicians and other health care providers should consistently talk to their women heart failure patients about the value of cardiac rehabilitation in improving patient outcomes, reducing hospital readmission rates, and lowering health care costs.

“We want to use these important research findings on women and heart failure as a platform to work with our partners in the public and private sectors to increase awareness about heart failure in women and improve the diagnosis and care of all women living with this life-threatening condition,” said Mary McGowan, Chief Executive Officer, WomenHeart. “By working together, we can make a difference in the lives of women living with heart failure and improve outcomes,” she added.

Learn more about WomenHeart’s national campaign on heart failure and women at:  http://www.womenheart.org/?page=SupportCHF.

Special thanks to St. Jude Medical Foundation and Novartis Pharmaceuticals Corporation for supporting the campaign through grants, and to Amgen for sponsoring the campaign.

Resources

¹Harvard Women’s Health Watch newsletter, Harvard Health Publications, Harvard medical School, September 2008. Available online at: http://www.health.harvard.edu/newsletters/Harvard_Womens_Health_Watch/2008/September/Heart_failure_in_women

²Cleveland Clinic Heart Failure in Women web page. Updated 2014. Available at: https://my.clevelandclinic.org/services/heart/disorders/heart-failure-what-is/heart-failure-women

³Harvard Women’s Health Watch newsletter, Harvard Health Publications, Harvard medical School, September 2008. Available online at: http://www.health.harvard.edu/newsletters/Harvard_Womens_Health_Watch/2008/September/Heart_failure_in_women

Great news! WomenHeart and Lord & Taylor have partnered in a new initiative to support women nationwide. Sounds like it’s time to stock up on much-needed basics for the boys, and buy my own Mother’s Day gift! Read on, for more details from WomenHeart …

On May 2nd, Lord & Taylor is hosting a national Charity Day for women’s health. Customers can support organizations nationwide benefiting women’s health. Customers can specifically support WomenHeart in three ways:

  1. Starting today, visit womenheart.org/LordandTaylor, donate $5 to support WomenHeart, and in return get one 20% off storewide savings pass and two 30% off single item coupons, to use in any Lord & Taylor store on May 2, 2015.
  2. Shop at lordandtaylor.com on May 2, and a percentage of net proceeds from purchases will benefit WomenHeart!
  3. If you are in the New York City area on May 2, visit the Lord & Taylor flagship store at 424 Fifth Ave., New York, NY, purchase a $5 savings pass, and receive the greatest discounts of the season on your Lord & Taylor purchases that day! Proceeds from the $5 savings passes sold at the Lord & Taylor flagship store on May 2 benefit WomenHeart!

WomenHeart Chief Executive Officer Mary McGowan said, “We’re excited to partner with Lord & Taylor to raise awareness about heart disease as women’s leading health threat and to empower all women to take charge of their heart health. Our partnership with Lord & Taylor means that more women nationwide will receive the free life-saving services and resources necessary to live a heart healthy life. We look forward to supporting women throughout the country as they strive for better heart health!”

Learn more by visiting www.womenheart.org/LordandTaylor. Shop at Lord & Taylor for that perfect Mother’s Day gift while supporting WomenHeart!

Blindsided by SCAD: Spontaneous Coronary Artery Dissection.

(Reprinted from the Uplifting Athletes blog)

Uplifting Athletes supports the larger rare disease community in addition to the rare diseases our 25 student-athletes led chapters champion. We welcome any rare disease organization to share their story with our audience. Spontaneous Coronary Artery Dissection (SCAD) is a rare, sometimes fatal traumatic condition that causes heart attack. The coronary artery develops a tear causing blood to flow between the layers, which forces them apart. Nearly 80 percent of SCAD cases affect women. The SCAD Alliance raises awareness and focuses on collaboration in the quest to empower survivors and health partners in the fight against this rare disease.

By Katherine Leon

It’s rare. You either die, need a heart transplant or get lucky … like you.

These words, spoken by my well-meaning cardiologist, still ring in my ears 11 years later. I say well-meaning because his intent was a bit of tough love to jolt me back to the business of caring for my newborn and 20-month-old sons.

But he wasn’t the one who’d had what is referred to as a “widow maker heart attack” out of the blue caused by a torn artery.

He wasn’t the one who was 38, never smoked, had pristine arteries, and lifelong blood pressure of 94 over 60.

He wasn’t the one who was struggling to recover from emergency double bypass surgery and a detached rib – collateral damage of the surgery.

And he didn’t have to worry if his kids would someday have a heart attack from a rare event that is now called spontaneous coronary artery dissection (SCAD).

My doctor had no pamphlet for me because he said the cause of my heart attack had never been researched. It was too rare to research.

In fact, he said I’d never meet another person who’d had SCAD.

It was really hard to understand that in 2003, a heart attack killing someone at such a young age had never been researched.

That day I made up my mind. Before I checked out of this world, I would get research started and make sure that anyone else diagnosed with SCAD would know exactly what happened, why, what to do about it, and – hopefully – how to prevent it from happening at all.

I would find the patients and bring them to the researchers. It seemed logical. If the reason SCAD hadn’t been researched before was access to survivors, how could researchers say no if the patients came to them?

My good fortune was to be alive in the age of the internet and searching online became my obsession.

When the boys were asleep at night, I would search for any and all terms related to heart attack, torn artery, dissection … whatever I could think of to find fellow SCAD survivors.

It took several years to find the first few people, but once our conversations became searchable in Google, the numbers began to grow. By 2009, I had a document that summarized the experience of more than 70 SCAD survivors worldwide and several family members of those who had died.

With data and a research agenda, I pursued an opportunity to meet a researcher.

While attending a heart disease symposium at Mayo Clinic, I got up my nerve to ask a cardiologist to be the first to research SCAD. From her background and role at Mayo, she seemed like the one person in the world who might just hear me out. And she did. It didn’t bother her that my fellow patients were people I’d never met in person.

She threw herself into the task of researching SCAD using participants I’d recruited on social media. After an intensive Institutional Review Board process, Mayo approved first a pilot study. And in September of 2011, a global registry of SCAD patients and a DNA biobank was launched.

The registry has grown to include nearly 400 participants. The DNA biobank holds several hundred samples.

Other institutions worldwide, including the University of British Columbia, University of Leicester in the United Kingdom, and Massachusetts General in Boston, have now launched clinical studies of SCAD as well. But there is a problem.

As encouraging as this progress sounds, every day patients go undiagnosed as we wait for the research to find answers. It is still common for patients to be told the heart isn’t the problem.

We’re young. We’re athletes. We don’t have traditional risk factors for heart disease. Doctors and emergency departments must be on the watch for SCAD.

Our average is 42 but we know men and women as young as 20 who are struggling with the aftermath of SCAD, which includes everything from depression to even heart transplant in some cases.

We must educate doctors while the science develops. The more we educate the more lives we save by preventing heart attack and sudden cardiac arrest from SCAD. That’s the mission of SCAD Alliance. Help us stop the blindside.

[This article was originally posted on Forbes.com.]

 3/03/2014 @ 11:51AM 1,959 views

Woman in the ER — Cue The Violins!

Why is it when a woman with chest pain enters the ER, the waiting room soundtrack switches from ‘80s soft rock to dramatic symphonic numbers? Even in 2014, it’s not unusual to sense a weary sigh among staff that yet ANOTHER woman “thinks it’s her heart.”

Well, it most likely is her heart. Heart disease is the number one killer of women, more than all cancers combined. Why is this still the case despite 15 years of WomenHeart, 12 years of the NHLBI’s Heart Truth campaign, and 10 years of AHA’s Go Red for Women? How can this be?

The ER doc who sent me home after I arrived at the hospital by ambulance with classic heart attack symptoms may offer a clue. As he completed my discharge papers, he explained, “It’s not our job to find out what’s wrong with you. Our job is to tell you what isn’t, and this isn’t your heart.” He pointed out the obvious (at 38, I was “almost 40”) so should get my gallbladder checked.

At the time, that struck me as an odd perspective from a medical professional. It’s one of those surreal moments etched crystal clear in my memory. Sure, it was 4:30 p.m. on a weekday and I was in sateen pajamas and a not-so-pretty nursing bra. And yes, I was definitely anxious and nauseous, but acid reflux didn’t quite fit with the experience I’d had that day. I’d finished breastfeeding my 7-week-old and was hit by a Wile E. Coyote-caliber anvil on the chest that mashed the air out of me and sent pain through my upper back and into my jaw. My arms went numb. I did in fact have a heart attack that day, and another three days later. Finally, on the sixth day, I underwent a cardiac catheterization and emergency double bypass surgery to repair the damage caused by Spontaneous Coronary Artery Dissection (SCAD), an increasingly recognized form of heart attack and sudden death, predominantly in women.

In contrast, the ER staff knew quite well that day what was wrong with the guy a few curtains over who was cracked out on PCP. Did they do a few scans, labs, and send him on his way saying, “It’s definitely not the drugs. Go see your internist.”? No, he hung out all day and seemed to be having a fabulous time harassing the nurses and exposing his genitals to anyone in range.

So perhaps the deck is stacked unfairly. Yet a snapshot of heart disease in women shows the urgency of our situation:

  • Heart disease kills 1 in 3 women. That’s approximately one per minute.
  • Ninety percent of women have at least one risk factor for developing heart disease.
  • The symptoms of heart disease in women often differ from those in men, and may be misinterpreted as a result.
  • Only half of women would call 9-1-1 if experiencing heart attack symptoms, but 79 percent say they would call to help someone else.
  • In the past 30 years, the rate of men dying from heart disease has gone down, but the rate of women continues to increase.

What do these stats tell us? To me, they firmly suggest that women need to step up. We need to apply the same care and concern to ourselves that we do to a partner or our children. To put the situation in perspective of the workplace: if a woman is at risk of losing a promotion to a coworker, would she draw the curtains, crawl into bed and resign herself to the loss? No. And if she would, then we have more fundamental issues to address as women before we can conquer our heart disease crisis.

Health care providers share the blame, and key elements of physician training must be fixed. We must determine what causes doctors to minimize patient concerns. What mechanisms can we put in place to supplement poor communication skills in both parties? How can compassion be built into the system, regardless of personality traits and prejudices? This isn’t just a matter of thinking outside the box; this requires an entirely new space — a sphere of ideas. Doctors need to understand what it is to be a patient, in every sense of the word. And women need to value themselves enough to demand the respect and care they deserve.

“It’s not our job to find out what’s wrong with you. Our job is to tell you what isn’t, and this isn’t your heart.” I can still hear those words, with a crescendo of violins in the background.

 

Katherine Leon is co-founder of SCAD Alliance, a nonprofit devoted to improving care and outcomes of Spontaneous Coronary Artery Dissection, an under-diagnosed cause of heart attack and sudden death. Katherine survived SCAD, heart attack, and emergency double bypass surgery after the birth of her second son. The ordeal marked a new beginning for her as an advocate for patient empowerment, women with heart disease, and her fellow SCAD patients. She initiated the first large scale, single-center research of SCAD in 2010, and continues to support survivors, their families, and health partners. @SCADalliance

 

Art Linkletter, Bill Cosby, and those in their footsteps have thoroughly proved that kids do say the darndest things. But when it happens at your own dinner table, you definitely must take stock.

I realized tonight that despite my valiant efforts at “normalcy” (whatever that is), I really wasn’t fooling my 10-year-old. He stated right to my face that he’d had quite enough of my meanderings through the healthcare system.

In response to my explanation about an upcoming hospital stay, he didn’t miss a beat: “Is it life-threatening?”

This is the kid who cuts me no slack. He’s the one who looks for buttons to push, always finds them, and even creates new ones. Face of an angel, soul of a hurricane. So, his question was a good one. Because yes, without the hospital stay, it is life-threatening. But with it, we — as a family — have fewer worries.

So the challenge as a mom is to not take this personally and to inject some humor. Does he really care that I’ll be away overnight? Of course not! It means late bedtime and possible x-box. Does he love me? Of course he does! I’m his mom.

Would I have it any other way? Not on your life.

It is Thanksgiving eve. Despite the recommended four-day refrigerator thaw, my bird is still frozen. While he takes a salt bath to “chillax” a little, I’ll be making a pie and prepping brussel sprouts. But, before I do … a moment at the keyboard.

This holiday will be the first for my family without my grandfather and my older brother. I was able to write a tribute post to Granddad but can’t yet put my brother’s passing into words. I’m not sure that I ever will.

There is something ultimately unfair that the 97-year-old died hale and hardy from complications of a fall, while the 50-year-old withered away in six months from cancer. A few days before his death, Granddad was whistling for the dining room waitress to bring him his chocolate pudding after each meal (poor form, but he did have a charming, dairyman’s way about him). A few days before my brother died, he was in hospice, writhing in unrelenting bone pain from esophageal cancer, which had metasticized to his lungs, kidneys, liver, spine…everywhere, it seemed, except his poor, suffering brain.

Oddly, in a way, they went together—just a few months apart. The day I helped transition my grandfather from the hospital to the hospice on the West coast of Florida, my brother confided he was too sick to make it over from the East coast to say good-bye. His back hurt terribly and he couldn’t keep food down. He said he preferred to remember Granddad as full of life as he was, so he wouldn’t make the trip. My mother and I urged him to go to the ER. He said he would let us know how he felt.

By the time my grandfather died, my brother had gone back to his internist, who sent him directly to the ER, which immediately admitted him with Stage IV esophageal cancer. I still don’t understand it. Probably never will. He was discharged to endure four months of cyberknife surgery, chemo, and radiation. The only time he admitted he was very ill was on the drive from the oncologist’s office to the hospice.

Realizing this is not the most “peppy” Thanksgiving post ever, my message is this: give thanks for what you have, when you have it. If we take competition and comparison out of the equation, we can each say we have lived life to the fullest. Life, ultimately, is a journey of one.

And now, back to the kitchen. Wishing you a peaceful Thanksgiving, full of who and what you love.

“That which we call a nose,
By any other name would smell as sweet.”

Or “sweetly,” depending which way the wind blows.

Apologies for mixing poets, metaphors and verb forms, but that’s just the kind of summer it’s been. It’s a time of mourning with lots of loss, sickness, life changes, and now my nose. It’s no longer the nose I was born with, thanks to heredity and youthful stupidity on sunny beaches years ago.

My nose has been called many things over the years. Ski slope. Kitty. Pug. But I always loved it, small and turned up as it was. When I was four years old, we were in Philadelphia getting off a city bus to see a tourist site. A woman stopped my mother and said, “If I had that little nose, I would hold it up in the air as high as I could.” To her, it was the perfect nose and deserved to be worn proudly.

With biopsies and band-aids leading up to the surgery, my secret sorrow has been on display for several weeks. But on Monday at the surgical center, grief took center stage. When the doctor began the numbing shots, I let out a wail and commenced braying like a stuck donkey while hyperventilating my way through sheer mortification. How perfect to be in the first treatment room, kitty corner to the front desk and adjacent to the waiting area. Do you apologize? Laugh it off? Keep crying? I tried a combo approach.

But wow did those shots hurt, way worse than the ones for the biopsies. My second round of weeping began after the tissue analysis. The good news was, the first two Mohs samples had removed all the cancerous cells. The bad news was, as I looked down at the diagram she drew of the recommended reconstruction, I could see the two bloody pits where nose used to be! Eeesh.

I was on board with the reconstruction plan, but then again — how could I not be? Who am I to argue with the woman who holds my hope for a complete, healthy nose in her talented grasp? Since my teeth were aching and we definitely didn’t want me braying again, it was time for more shots.

Incisions were made, tissue tugged and placed, and two rows of stitches completed for each closure. The first round of each suturing made a clicking sound; the second was good old-fashioned needle and thread. Somewhere along the way I asked if they could please just hit me on the head and knock me out, but that wasn’t an option.

As the final step in each phase, the smell of cap guns filled the air as the surgeon cauterized “for a better cosmetic result.” She was aghast at my comment but I thought everyone of a certain age had owned a cap gun as a kid. The technician agreed with me: caps, which definitely beats thinking about what we were actually smelling!

By the time I was waxing poetic about the complete Laura Ingalls Wilder series to keep myself distracted, the surgeon began sawing off my ear. Not really, but it sure sounded like it. As she cut the graft to fill in the left side of my nose, her assistant cranked up the best hits of the 1930s and ’40s. (Note: cardiology and skin cancer offices cater to a similar demographic.)

What an ordeal — for us all! I feel so fortunate the philosophy of the Skin Cancer Surgery Center is very caring, hands on, and patient centered. (But I really do wish they had knocked me out; actually, they probably wish they had too.)

I talk a lot about post traumatic stress disorder in SCAD patients, and do believe it plays a role in our recovery and future health care experiences. It was so comforting that the surgeon took time to hear my feelings about earlier scars from open heart surgery. Her reassurance that she will do whatever it takes to heal my nose successfully is heartening. At 48, I plan to have several decades left to wear my nose proudly through life.

I just hope I don’t sneeze for another year or two.

For more on the various forms of skin cancer, symptoms, and treatment, check out: Skin Cancer

Granddad Bass OriginalYou are probably familiar with the African proverb “it takes a village to raise a child,” popularized in America as the title of Hillary Clinton’s book in 1994. Over the years, it began to take a village to do most anything — yet a cliché stops being a cliché the moment our experience speaks to its meaning.

Recently life taught me it DOES take a village. Birth, growing up, survival, death – it all takes a village.

A few weeks ago, my 97 year-old grandfather fell for the last time doing things his way (let’s just say he insisted on standing and letting go of his walker). He broke his pelvis, collarbone, and elbow (again). While in the hospital, he developed internal bleeding and sepsis. By the time we arrived, his speech was unintelligible, but he could nod and shake his head to communicate. (The last words we understood were those when he saw my mom, greeting her one final time with his trademark, “Hey babe.”) All things considered, our last few days together were good ones. When he was awake, his eyes were bright. He laughed at a joke. But severe seizures had set in and it was time to make the decision.

I was astounded by the care and concern of each person we met – nurses, technicians, respiratory therapist, transport staff, hospital social worker, and internist. In their own ways, they gently urged the right thing for him, which was inpatient hospice and palliative care. In hospital, they were doing their jobs and treating symptoms – even doing a CT scan to try to determine the cause of his seizures. In hospice, he would receive pain medication to control the seizures and peacefully pass.

The hospice staff each were angels personified. I could have never imagined that such a place existed and that people devoted themselves to the delicate transition between life and death. I brought my grandmother to spend two afternoons with him, and she held his hand reliving their life of more than 77 years together. And then he slept.

Granddad’s experience sounds almost like the perfect way to go. Yet how many of us will be so fortunate? He was a cat with nine lives, and toward the end, was helped by my mother, my grandmother (who, even at 95, doted on him), the staff of a wonderful assisted living facility, rehab therapists, a part-time caregiver, and ultimately strangers – the staff at the hospital and hospice. I believe it is a tribute to him and all that he did for others in his lifetime that he lived so long and touched so many.

Today, we are fortunate that the village extends to the virtual world. If my grandfather had been born in 1966 instead of 1916, perhaps when he had his first heart attack at age 46, he would have told his family instead of keeping it a secret until his second one decades later.

In family lore, his “spell” was nerves, and the doctor advised him to find a hobby. In true dairy farmer fashion, he decided to fish. Never mind that he had no place to fish. He dug out not one, but two ponds on his 80-acre farm and stocked them with bass and bluegill. Some of my fondest memories are of fishing with my grandfather. It took until I was 28-years-old to finally catch a bass, and he was so proud of me. It was 6 pounds 10 ounces, rivaling the 8 pounder he hooked when I was small.

If his heart disease happened today, maybe he would go online to explore what to do to prevent future heart attacks. Or maybe, his mystery heart attack was a spontaneous coronary artery dissection, or SCAD, like mine. Today the technology exists to know the answer. In Pimento, Indiana, circa 1962, the doctor handed him unidentified prescription pills in a pocket-sized brown paper bag with instructions written by hand. Everyone did what “Doc” said, even though they weren’t exactly sure why. His advice to go fish, though, you can’t argue with that.

Granddad — your village misses you!

Why, yes … yes she has!

You know at gatherings, when people haven’t seen each other for a few years, generally some speculation ensues. Real or fake?  A lift or good genes? And in the most severe cases, who is that stranger?!

The Bionic Women (and friend)

Well, with great pride, the three of us pictured at our 30th high school reunion can state without a doubt, we definitely had some “work” done. Some serious work. From left to right: heart attack from spontaneous coronary artery dissection, repaired with double bypass surgery; an acoustic neuroma, successfully removed through brain surgery; and open heart surgery to graft an aortic aneurysm and perform a mechanical valve replacement. (No health issues for our lap man — he’s just a very funny accessory!)

It wasn’t by design, but we saved the shop talk until the very last. As people said good-byes and drifted out the door of the heartwarming gathering we’d enjoyed, the three of us found ourselves together. Like a last minute huddle, reliving the not-so-great highlights of our years since high school and gearing up for the time until our next reunion. By way of illness, we share a language and awareness you only gain through experience. We are well, at least for the moment, and that is truly all each of us ask. Because as we learned the hard way at an early age, things can always get worse. But day by day, they can get better too.

Thirty years have passed. It was enlivening to realize that within each of us, our 18-year-old selves still flourish. The bikini days may be gone, but I’m much happier being bionic!

[Correction: A Dose of Reality regrets our misstatement that “the bikini days” are over. Rock it, girl!]

 

I speak for those who can’t speak tonight. I speak for those who’ve been brushed under the rug by slight-of-hand. I speak for the dead.

We’d all like to believe that if we control our risk factors, listen to our bodies, and call for help when in need there would be no heart disease. No heart attack. No stroke. No death.

Yet we all know the truth, which is women do the right thing every day and die anyway.

Whether from congenital defect, unmanageable risk factors, or un-researched biological boogeyman, women die from heart disease every minute of every hour of every day because we haven’t devoted the attention, research dollars, or sweat equity to keep them alive.

Don’t insult my intelligence by telling me that awareness of heart disease will keep me alive. I literally could teach a course on Spontaneous Coronary Artery Dissection (SCAD) to med students today and die of a second heart attack from SCAD tomorrow because the data hasn’t been funded to explain my disease or prevent my death from it.

Talk to me about answers. Show me cradle-to-grave assessment, risk management, and care. Act upon my crisis.

Women die every minute of every day because death from heart disease isn’t yet lucrative or sexy enough for our health care and research establishments to act.

I’m fighting hard until I Go Dead for Women.

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