MARCH/APRIL 2016 EXTREME MAKEOVER: HEART ATTACK EDITION 3 survivors swap heart-stopping habits for clean eating, lower-stress jobs and more exercise — even marathon training

Changes you can make today to lower your risk for heart attack & stroke

PLUS:  A teen’s sudden cardiac death prompts new AED & CPR law

 Hands-only CPR training — during your layover

 Mission Viejo chapter shares secrets to its success Heartbeat, the national magazine of The Mended Hearts, Inc., a nonprofit organization, is published six times per year by The Mended Hearts, Inc. The Mended Hearts, Inc. Staff Art Director, Ben Carpenter Board Of Directors 2015-2017 Accountant, Sheila Todd Editor, Melanie Medina President, Donnette Smith Accounts Receivable Data Entry Graphic Designer, Whitney Holden Executive Vice President, Millie Henn Clerk, Heather Freeman Contributing Writers: Heather Elise Duge, Vice President, Patrick Farrant Corporate Development and Scotty Fletcher, Heather R. Johnson Treasurer, Randy Gay Program Director, Jessica Deering Contributing Photographer: Tom Tumminello Mended Little Hearts Director of Operations, Janette Edwards Vice President, Melanie Toth Director of Patient Advocacy, Andrea Baer Letters of inquiry and publication are encouraged. Materials should be sent to Executive Director, Michele Heartbeat, The Mended Hearts, Inc., 8150 Regional Directors Packard-Milam, CAE N. Central Expressway, M2248, Dallas, Central, Jana Stewart Field Services Director, Marcia Baker Texas 75206, 1-888-432-7899. Mid-Atlantic, Gerald Kemp Fulfillment Clerk, Keith Quigley The publishers and editors of Heartbeat cannot assume responsibility or liability Midwest, Cathy Byington Manager, Communications and Field Services, Mandy Sandkuhler for the return of unsolicited photography, Northeast, Frank Cecco artwork or written materials. Member Database Coordinator, Rocky Mountain, Bob Oberfield Michael Dealey For subscriptions to Heartbeat, see the Southern, Fredonia Williams registration form in the center of the Member Services Coordinator, Jessica Iga magazine. No part of this publication may Southwest, Lynn Berringer Mended Little Hearts be reproduced without the permission of Western, Ron Manriquez Director, Jodi Lemacks The Mended Hearts, Inc. ©2016. Patient Network Coordinator, Mended Hearts, Inc. assumes no Immediate Past President, Gus Littlefield René Battles responsibility for claims arising in connection with products or services Past Presidents’ Council, Margaret Elbert Program and Corporate Development Coordinator, Tierney Wright nor endorses any products or services Mended Little Hearts Director, Megan Setzer advertised in Heartbeat.

We’re So Pumped! The Heartbeat Now Mobile App Is Here. The brand-new Heartbeat Now app is making serious waves. ased on Heartbeat magazine, the app features all of the articles from each issue, as well as Mended Hearts and Mended Little Hearts news, Bvideos, stories from survivors and more. App users can save their fa- vorite stories, share them on social media, contact their regional represen- tatives and post comments about the stories throughout the app. Updated with each issue of Heartbeat, the app is a great way to stay up-to-date wherever you are. Available on iPhones as well as Android and Google devices, Heart- beat Now is a tool to supplement our members’ experience as givers of hope to heart disease patients and caregivers. Stay involved and connect with us whether you’re at home, on the go, or volunteering as a Mended Hearts or Mended Little Hearts member! As always, we aim to help our members pave the way toward happy, healthy post-diagnosis living.

Download the Heartbeat Now mobile app from your device’s app store today! MAR/APR 2016

Photo: Tom Tumminello

Features Departments

Changing the Things We Can Heart to Heart...... 2 10 We can’t control our genes, but we can control many lifestyle State of the Heart...... 4 factors that contribute to heart attacks and strokes. Pulse Check...... 6 Technology ...... 6 Extreme Makeover: Life After a Heart Attack Heart Hero...... 7 16 Three Mended Hearts members share how their heart attack Sudden Cardiac Arrest...... 8 prompted major lifestyle changes. CPR & First Aid...... 9 Vitals...... 24 A Matter of Time, Life and Death MH Chapter Spotlight...... 24 20 Gwyneth Griffin’s death from sudden cardiac arrest may have MLH Group Spotlight...... 26 been prevented had others been equipped to take Gifts from the Heart...... 27 quick action. Historical Hearts...... 28 Regional Map...... 29

On the Cover: After a heart attack nearly killed him, MARCH/APRIL 2016 EXTREME Mended Hearts member Mike MAKEOVER: Anthony lost 80 pounds and HEART ATTACK EDITION 3 survivors swap heart-stopping habits has run four marathons. His for clean eating, lower-stress jobs and more exercise — even marathon training friend Tom Tumminello shot the Changes you can make today to lower your risk cover photo of Mike running for heart attack & stroke near a lake at Harriman State

PLUS: Park in New York.  A teen’s sudden cardiac death prompts new AED & CPR law

 Hands-only CPR training — during your layover

 Mission Viejo chapter shares secrets to its success

MARCH/APRIL 2016 HEARTBEAT 1 HEART TO HEART Speak from Cheering Section the heart

s someone who has survived breast cancer as about your well as heart disease, I have participated in events such as the Susan G. Komen three-day walk. My Adaughter, who’s also a heart survivor, often partic- ipates with me. It’s wonderful to feel the excitement in the air angina and see people on the side of the road, cheering for the cancer survivors. But it does make me wonder: Why aren’t heart disease survivors that excited? We should be! “I realized that by talking only about Our walks and events should be celebrations. I want to see a band, cheerleaders, pom-poms, fired-up people saying, “You the number of attacks, I wasn’t telling survived this heart attack, and you don’t have to have another one! my cardiologist the whole story.” You’re a survivor!” There’s life after heart disease — and life during Donnette, angina patient

Photo: Jeffrey J. Hanshaw heart disease. We should be grateful and excited about that. All too often, people who have survived heart disease focus on It’s wonderful to feel the the fact that they can’t go to their favorite burger joint as often If you have been limiting your work or your activities as they’d like or that they need to quit smoking or cut down on because of your chronic angina, be sure to talk about excitement in the air and caffeine, but think, instead, about how fortunate we are to be alive it with your cardiologist. see people on the side and have the option to change our habits. On page 16, you’ll meet of the road, cheering for three survivors who did just that. Each looked at heart disease not For tips on how to talk with your cardiologist, information the cancer survivors. But as an obstacle but as a reason to make huge, positive life changes about living better with angina, and support and stories for their health. Their stories are inspiring (and exciting!). from people just like you—including Donnette—visit it does make me wonder: We should also be grateful that we live in a time when tech- www.SpeakFromTheHeart.com. Why aren’t heart disease nologies and treatments are improving every day. I was recently survivors that excited? fortunate enough to witness a transcatheter aortic valve replace- Watch Donnette’s video ment. I stood at the foot of the operating table, holding my breath, and watched as they replaced the valve in the woman’s still-beating heart. When they blew up the balloon to position the valve, I could see that valve actually beating, working perfectly in this woman’s heart. She had a new valve in an instant. I wanted to start cheering. It was the most incredible thing I’ve ever seen in my life. I want people to feel that enthusiasm every day. We have new treatments that weren’t available even 25 years ago and so many others will be introduced in our lifetime. Living as a survivor is not a burden, it’s a blessing. Grab your pom-poms, and let’s cheer for each other. Your cardiologist is listening Donnette Smith President Mended Hearts

2 HEARTBEAT MARCH/APRIL 2016 Speak From the Heart is a trademark, and the Speak From the Heart logo is a registered trademark, of Gilead Sciences, Inc. © 2012 Gilead Sciences, Inc. All rights reserved. UN13101 5/12 Speak from the heart about your angina

“I realized that by talking only about the number of attacks, I wasn’t telling my cardiologist the whole story.” Donnette, angina patient

If you have been limiting your work or your activities because of your chronic angina, be sure to talk about it with your cardiologist.

For tips on how to talk with your cardiologist, information about living better with angina, and support and stories from people just like you—including Donnette—visit www.SpeakFromTheHeart.com.

Watch Donnette’s video

Your cardiologist is listening

Speak From the Heart is a trademark, and the Speak From the Heart logo is a registered trademark, of Gilead Sciences, Inc. © 2012 Gilead Sciences, Inc. All rights reserved. UN13101 5/12 STATE OF THE HEART Conferences Hit the Road

very day, every week, every month, every year... Mended Hearts and Mended Little Hearts volunteers help heart patients and families along their heart journeys. EWhether the patient or family is working to accept a difficult diagnosis or deal with an intimidating surgery, you are there to tell them about your journey and help them get through theirs. The people who organize, lead, visit and welcome shell-shocked patients who still can’t quite believe they’re sitting in a heart survivors support meeting — these are people who deserve to be celebrated.

Photo: Aggie Brooks For the first time, we’re bringing the National Education and Training Conference to you, to do just that. We’re coming to Friends are as companions celebrate your achievements and offer new ideas. We want to Open Your Heart: learn about your challenges and hear your thoughts on where on a journey, who ought to our organization is heading. aid each other to persevere The National Education and Training Conference will Donate Today in the road to a happier life. happen in six cities this year. Hopefully, one of them is within a —Pythagoras manageable drive or an affordable flight from your hometown. Ways to Give to Mended Hearts Here’s what we have to offer: • Growing your membership and Mended Little Hearts • Creating programs to attract more people • Building stronger hospital relationships For over 60 years, Mended Hearts has been helping • Use AmazonSmile Instead of Amazon to Shop. • Driving awareness through social media and marketing heart patients live healthier lives. And your financial Select Mended Hearts as your charity and • New ways to engage patients support makes a huge difference in how we do this. AmazonSmile will donate 0.5% of your purchases • The latest treatment options and medications Here are a few ways you can help. to Mended Hearts. • Donate to a Combined Federal Campaign. • Networking with other heart patients and caregivers • Seasonal Campaigns. June 5 is our National Day Support Mended Hearts by donating to a CFC. Be Regional awards of Giving. We honor Mended Hearts’ founder Dr. • sure to designate #24730. Lots more! Dwight Harken’s birthday by using contributions to • • Use Goodsearch Instead of Google. Register fund projects and educational initiatives at Mended ððScottsdale, Arizona — May 15-16 The registration is a bargain: just $50 for two days of ideas for “Mended Hearts” on Goodsearch, a charity- Hearts and Mended Little Hearts. In November, ððMission Viejo, California — June 3-4 and opportunities to share your successes and pick up new ways fueled search engine, and every time you ð — “the month of giving,” we host the “Thanks for ðRaleigh, North Carolina June 23-24 to grow a chapter or group. Think of it as a mobile town hall complete a web search, Goodsearch will donate ððRosemont, Illinois — July 21-23 Giving” campaign where we ask friends of the with great refreshments — and a passel of people who love the $.01 to Mended Hearts. ððAustin, Texas — September 23-24 organizations to help support our mission. same things you do. I hope I get to see you there. ððHuntsville, Alabama — October 28-29 • Planned Giving. To include a gift to Mended Remember, you can donate any time online at Hearts or Mended Little Hearts in your will, discuss www.MendedHearts.org REGISTER NOW the matter with your estate planner or attorney. Michele Packard-Milam, CAE • Honor a Loved One. Give a donation in honor Thank you for your support! www.MendedHearts.org Executive Director of someone you find brave or inspiring. Their Mended Hearts name will be printed in the “Gifts from the Heart” section of Heartbeat magazine. 4 HEARTBEAT MARCH/APRIL 2016 Open Your Heart: Donate Today Ways to Give to Mended Hearts and Mended Little Hearts

For over 60 years, Mended Hearts has been helping • Use AmazonSmile Instead of Amazon to Shop. heart patients live healthier lives. And your financial Select Mended Hearts as your charity and support makes a huge difference in how we do this. AmazonSmile will donate 0.5% of your purchases Here are a few ways you can help. to Mended Hearts. • Donate to a Combined Federal Campaign. • Seasonal Campaigns. June 5 is our National Day Support Mended Hearts by donating to a CFC. Be of Giving. We honor Mended Hearts’ founder Dr. sure to designate #24730. Dwight Harken’s birthday by using contributions to • Use Goodsearch Instead of Google. Register fund projects and educational initiatives at Mended for “Mended Hearts” on Goodsearch, a charity- Hearts and Mended Little Hearts. In November, fueled search engine, and every time you “the month of giving,” we host the “Thanks for complete a web search, Goodsearch will donate Giving” campaign where we ask friends of the $.01 to Mended Hearts. organizations to help support our mission. • Planned Giving. To include a gift to Mended Remember, you can donate any time online at Hearts or Mended Little Hearts in your will, discuss www.MendedHearts.org the matter with your estate planner or attorney. • Honor a Loved One. Give a donation in honor Thank you for your support! of someone you find brave or inspiring. Their name will be printed in the “Gifts from the Heart” section of Heartbeat magazine. • The Doctor Will Hear You Now • Katy Portell: Living Hope PULSE for Little Hearts • A Heart Attack ≠ Sudden Cardiac Arrest CHECK • Hands-Only CPR Saves Lives • And More... KEEPING THE BEAT ON HEART INFO, NEWS AND PEOPLE.

TECHNOLOGY The Dr. Will Hear You Now

our physician may soon audio file, compare it to previous record- have a handy new tool to ings to detect any changes and even share better hear the sounds of it with a specialist if necessary. Yyour heart and lungs. Eko “The beauty of the Eko Core is that it Core, which was recently approved by captures heart sounds in a streamlined the FDA, is an adapter that attaches to way that has never been done before, the stethoscope and amplifies the sound. interfacing seamlessly into our traditional Your doctor then streams your heartbeat exam without requiring any extra effort,” data to your electronic health record, says John Chorba, M.D., a cardiologist at where he or she can then analyze the U.C. San Francisco. “It really is a won- derfully simple idea with the potential to be a real game-changer.” Its founders say Eko Core has the potential to reduce the number of unnecessary referrals, patient anxiety and expensive testing. It can be used in a number of settings, including primary care, pediatrics, cardiology, telemedicine and even medical education. In 2015, Eko was selected to present at SXSW Health, the Aspen Ideas Festi-

Photo: Eko val, CES and the United Nation’s 70th Eko Core is a device that attaches to a stethoscope and amplifies the Anniversary Celebration. It also ranked sound. The audio can be streamed to a patient’s medical record, ana- No. 5 on Time magazine’s best inventions lyzed and shared with specialists. of 2015. — Melanie Medina

6 HEARTBEAT MARCH/APRIL 2016

People who refill prescriptions online are more likely to take the medication as prescribed. PULSE CHECK

HEART HERO Katy Portell: Living Hope for Little Hearts

ife didn’t begin easy for with STA. Soon Katy Portell. Born with four after settling in, Photo courtesy of Katy Portell congenital heart defects, sur- she reached out to Katy Portell’s heart geons transplanted a donor’s Mended Little Hearts in Dallas and has beats thanks to a L donor heart valve. heart valve into her heart when she was been involved ever since. just four years old. But today, Katy, 25, is Mended Little Hearts of Dallas works She speaks often about the life-saving living her dream as a volunteer coordi- closely with Children’s Medical Center, potential of organ nator at Southwest Transplant Alliance where they host monthly meetings for donation through (STA), telling her story and encouraging families in the heart center and conduct her work at South- west Transplant organ and tissue donation. regular visits. Alliance, and as a Katy connected with Mended Hearts For Portell, Mended Little Hearts is member of Mended in 2007 while living in Alaska with her about hope, but also awareness. “My goal Little Hearts. family. While picking up T-shirts for an is to bring hope to parents who are just upcoming Heart Walk, they were invited learning that their child has a congenital to a Mended Hearts meeting where they heart defect. I feel blessed as a child who happened to be inaugurating Alaska’s has come through surgeries and hospital first Mended Little Hearts group. stays and is now able to tell them my “We dove right in and became part of story,” she says. “I also want to advo- that group, meeting monthly and doing cate for adult patients because it’s very hospital visits,” Portell says. important for families to hear that as a Tech Talk Portell eventually relocated to Hous- child grows, their care must continue.” Did you know you ton. There, she met a group of passionate Portell hopes to be a role model, show- can access Mended members of The Woodlands, Texas Chap- ing kids they can grow up and pursue Hearts resources on ter 341 of Mended Hearts who wanted to their own dreams, remaining strong by your phone? Read start a Mended Little Hearts group. eating well, exercising and keeping up this magazine with “My Mom and I helped them with with their cardiac care. the “Heartbeat the groundwork and eventually a great “Getting involved is how I connected Now” app or learn group of moms came on and ran with it,” with my heart story in the first place,” she to navigate life after Portell says. “They formed Mended Little says. “Now it’s a part of who I am and a a heart event with Hearts of Houston in 2014.” passion. I will always have this, which can the “Mended Hearts Though Katy continues to support be scary, but there is incredible medical HeartGuide” app. the Houston group, she moved to Dallas care out there for us now. It’s important Both are available over a year ago to pursue her dream job for kids to grow up knowing that they are on your iPhone or promoting tissue and organ donation not alone.” —Scotty Fletcher Android.

MARCH/APRIL 2016 HEARTBEAT 7 PULSE CHECK

SUDDEN CARDIAC ARREST A Heart Attack ≠ Sudden Cardiac Arrest

Staying ne minute, Francee on Track Levin was talking with About 74% of heart a teacher at Colleton patients reported County Middle School, that activity O where she held a poetry residency. The trackers — like next, she was lying unconscious in an fitness bands, intensive care unit. In between she blood pressure/ died. Twice. heart rate apps Francee Levin didn’t suffer a near- and food trackers fatal heart attack. She experienced — helped them sudden cardiac death — in her case, physical function. The event did leave cope with their with no symptoms and no known cause. her with a weakened heart, which she condition, accord- Loss of heart function, or sudden car- continues to work on in cardiac rehab. ing to a survey diac arrest (SCA), causes sudden cardiac Levin’s story proves the impor- by HealthMine, death (SCD). According to the Ameri- tance of defibrillation when treating a Dallas-based can Heart Association, up to 80 percent a person experiencing sudden cardiac health technology of people who suffer SCD have coronary arrest. “To work well, defibrillation company. The heart disease. Other risk factors include must be done within minutes of SCA. downside? Only age, hypertension, an enlarged heart, With every minute that passes, the about 31% of heart elevated cholesterol, glucose intolerance, chances of surviving SCA drop rap- patients use these smoking and excess weight. idly,” the National Heart, Lung and devices. Aside from the fact that she was over Blood Institute reports. EMTs often age 55, Levin had none these risk factors have and use defibrillators. Many and no family history of heart disease. public places, such as shopping malls, She did have good luck. Two school airports, airplanes and hotels have nurses and a resource officer used CPR automated external defibrillators that and an automated external defibrillator the public can use. (AED) to keep her alive. EMTs quickly Levin believes even more public airlifted Levin to a major medical center places should have AEDs. “This hap- in Charleston, South Carolina. pens a lot more frequently than people Despite a grim prognosis, Levin not realize,” says Levin. “If we had more only survived SCD and a nine-day defibrillators, we could save a lot more coma, but regained full memory and lives.” — Heather R. Johnson

8 HEARTBEAT MARCH/APRIL 2016 PULSE CHECK

CPR & FIRST AID Hands-Only CPR Saves Lives

ach year, more than 300,000 U.S. adults die from sudden cardiac arrest Eoutside the hospital, according to the American Heart Association (AHA). Some of these deaths could be prevented if bystanders were able to perform CPR. But many times, people nearby don’t do conventional CPR — which includes mouth-to-mouth resuscitation and chest compressions — because they’re afraid they’ll hurt the victim, or because they’re not confident in their skills. To help alleviate that fear, the AHA issued a call-to-action for bystanders to use chest-compression-only CPR. The AHA’s recommendations: 1. Tell someone to call 9-1-1, or make the call yourself 2. Start chest compressions in the center of the victim’s chest Another tip from the AHA: Do the chest compressions to the beat of the Bee Gees’ Stayin’ Alive. The AHA has had several clever campaigns to get the word out about hands-only CPR, including videos featuring actor, comedian and physician Ken Jeong channeling his inner-John Travolta as he helps administer hands-only CPR to the iconic disco tune. They’ve also installed kiosks at several major U.S. airports so that people can learn and practice hands-only during a layover. And for 2016, the AHA is taking their call-to-action mobile. The asso- ciation will head to Florida, Georgia, Virginia, West Virginia, Ohio and Indi- ana with mobile demonstrations. Exact locations in each state will be posted on www.heart.org in August. An important caveat: Hands-only CPR is not recommended for children, says Wendy Sue Swanson, M.D. with Seattle Children’s Hospital. CPR for infants younger than 12 months con- sists of doing 30 chest compressions (with your fingers) and then two gentle, 1-second rescue breaths, then 30 com- pressions again. Repeat. For children younger than 8 years old, the CPR ratio is 30 compressions for every two breaths. This is the same Photo: Brian Kersey/Getty Images for The American Heart Association compression-to-breath ratio as infants. Lourdes A. Rodriguez of Turnkey Training/Chicago Heartsave, tries However, the position of your hands for the Hands-Only CPR Training Kiosk provided by the AHA and Anthem compression is different. Foundation before its launch at O’Hare International Airport’s Terminal — Melanie Medina 2 in Chicago.

MARCH/APRIL 2016 HEARTBEAT 9 CHANGING THE THINGS WE CAN We can’t control our genes, but we can control many lifestyle factors that contribute to heart attacks and strokes. By Heather R. Johnson

10 HEARTBEAT MARCH/APRIL 2016 hile we can’t control risk no matter what our genes say. “This everything about our health, is something that we can absolutely do there’s plenty that each of us if we work together,” says Janet Wright, can do to prevent heart dis- M.D., Million Hearts executive director. ease and stroke. And Million Read these ABC’S to help you control Hearts — a national initiative your risk factors. Wto prevent 1 million heart attacks and strokes by 2017 — is on a mission to A is for Aspirin (when educate people about those things that appropriate) are within our power to control. The American Heart Association and Their mission is needed: about 1.5 other organizations recommend that million heart attacks and strokes occur heart attack survivors and people at high every year in the United States, accord- risk for heart attack take a low-dose aspi- ing to Million Hearts, which is co-led rin. Aspirin thins the blood and prevents by the Centers for Disease Control and the blood clots that contribute to heart Prevention (CDC) and the Centers for attack and stroke. Medicare & Medicaid Services. And Aspirin may reduce the odds of heart one out of every six health care dollars is attack or stroke for those who smoke spent on cardiovascular disease, according or suffer from coronary artery disease, to CDC data. diabetes, high blood pressure or high The good news is that with a combi- cholesterol. However, those who haven’t nation of good habits and good health had a heart attack should only take aspirin care, we can all reduce our heart attack if a health care professional says it’s safe. GENETIC RISK FACTORS FOR HEART DISEASE AND STROKE n addition to more often than their higher-income peers. Those Ienvironmental in the Southeast region of the U.S. have the highest and lifestyle stroke death rates. factors, genetics One risk factor for heart disease that runs in and other influ- families is high cholesterol. Familial hypercholester- ences can increase olemia (FH) is a genetic disorder characterized by a person’s risk high cholesterol levels, especially “bad” LDL cho- for heart attack lesterol. “FH is underdiagnosed and undertreated,” and stroke. For says Million Hearts executive director Janet Wright, instance, African M.D. “Experts and primary care doctors that Americans have manage this condition say that you don’t find an the highest rate individual with FH; you find a family.” of high blood Dr. Wright says that those treated for FH, usually pressure, which with a statin, can reduce their cholesterol—and Janet Wright, M.D., Million Hearts can lead to heart their heart attack risk—to that of the normal executive director attack or stroke, population. “This is a great example of how better of all ethnicities, according to Million Hearts. detection and better treatment can save people Low-income individuals also suffer high blood from having heart attacks at an early age,” Dr. pressure, high cholesterol, heart attackand stroke Wright says.

MARCH/APRIL 2016 HEARTBEAT 11 B is for Blood Pressure When your heart has to work overtime LIFE HACKS FOR A HEALTHY HEART because of high blood pressure, you’re more likely to suffer a heart attack or stroke. The higher those numbers go, the higher the risk. To control blood pressure, first, monitor it regularly. And don’t just rely on a routine Eat a healthy diet. Consider the DASH Diet: vegetables, fruits, doctor visit, Dr. Wright low-fat dairy, beans, nuts and seeds. Go easy on “empty” carbs says. Check your blood such as white bread, and limit fats and sweets. For heart health, pressure at home, at your it’s key to choose foods that are naturally low in sodium, choles- local pharmacy, or some terol and saturated and trans fats. other non-medical venue. A medical setting, despite good equip- ment and intentions, may not give the most accurate reading. “Most of us get a little bit stressed when we go into the doctor’s office, even for something routine,” says Dr. Wright. “Blood pressure is a dynamic and sensi- Get active. Do something active on most days, whether it’s a tive indicator, so a little bit of stress can brisk walk, a bike ride or a dance party in the living room. People falsely elevate the numbers.” By moni- are more likely to stick with an activity if it’s one that they enjoy. toring blood pressure in a “no-pressure” environment, people get a comprehensive view of their blood pressure, which they can then pass on to the doctor. To bring those numbers down, adopt a healthy lifestyle and talk with your doctor about medication. Of the one in three Limit alcohol. Experts recommend no more than two drinks a U.S. adults with high blood pressure, only day for men and one drink a day for women. Remember that about half have it under control. Lifestyle a drink equals a 12-ounce glass of beer, a four-ounce glass of changes can go a long way toward upping wine or one-and-a-half ounces of liquor. that percentage. C is for Cholesterol With cholesterol, one can definitely have too much of a good thing. Our bodies need some amount of cholesterol to make hormones and digest fatty foods. But too much cholesterol can Maintain a healthy weight. By following the steps above, build up in artery walls and unwanted pounds may naturally fall away. Those who are cause heart disease. overweight or obese should talk to their health care provider The lifestyle changes to about how to set and meet weight-loss goals. control blood pressure — such as a healthy diet and

12 HEARTBEAT MARCH/APRIL 2016 exercising — can also help reduce LDL and shortness of breath decrease; and, cholesterol and triglyceride levels, and most importantly, the excess risk of raise “good” (HDL) cholesterol. Stud- coronary heart disease drops to half that ies have shown that healthful dietary of a continuing smoker. changes can cut cholesterol by 20 to 30 A 2004 Surgeon General’s report percent. showed that smoking impacts nearly When diet and exercise aren’t enough, every organ in the body. Smoking con- doctors often recommend medication. tributes to a host of diseases, from stroke Cholesterol-lowering drugs include and dental problems to reproductive statins, niacin, bile-acid resins, fibric acid health, chronic obstructive pulmonary derivatives and cholesterol-absorption disease (COPD) and heart disease. inhibitors. Some drugs provide a combi- Smokefree.gov helps smokers build a nation of treatments. “quit plan” that includes the following: Statins can quickly reduce LDL • Set a quit date. cholesterol by 50 percent or more and • Consider why you want to quit. raise HDL cholesterol by as much as 15 • Understand your smoking triggers. percent. This is great news when it comes • Understand what causes cravings. to reducing heart attack risk. Despite the • Ditch the reminders, such as ashtrays, benefits, of the 71 million people eligible and clean your car and clothes. for statins, only a little over half take • Tell friends and family so they can them. Many people fear or can’t tolerate support you. the side effects. Others don’t want to take Although a number of resources exist a pill every day or can’t afford to. to help smokers quit, and the number of Dr. Wright advises individuals to smokers has dropped since the Surgeon consider medication if their doctor General released the first report that recommends it. (Ask for a generic warned of the health hazards of smoking version, which will cut down the cost.) 50 years ago, health care providers can do “[Statins] are extremely effective with more. few side effects,” says Dr. Wright. “Use of “We’re seeing progress, but we’d like to these drugs is associated with fewer heart see more health care providers go beyond attacks and strokes.” asking about smoking status to actually helping their patients quit,” Dr. Wright S Means Stop Smoking says. “Million Hearts is directing its It’s easy to advise someone to quit efforts in this ‘assist’ step by providing a smoking. It’s not so easy to do it. But standardized protocol that helps smokers quitting tobacco for good has so many get the counseling and medication that benefits. The American can help them quit.” Cancer Society reports Dr. Wright says meeting the Million that within a year after Hearts goal will be a collaborative quitting, heart rate and effort among patients, health care blood pressure drop; providers and non-profits. And she’s the carbon monoxide hopeful about realizing the vision of level in the blood cutting the number of heart attacks and returns to normal; cir- strokes by a million: “We can knock culation and lung func- heart disease off as the nation’s number tion improve; coughing one killer.”

MARCH/APRIL 2016 HEARTBEAT 13 Raising Awareness,

TOthanks ANTOthanks LVAD... AN LVAD... Have an LVAD? Mending Hearts HEART FAILURE PATIENTS NEED More than MORE OPTIONS Tell Us About It! 5 MILLION AMERICANS MORE OPTIONS 5 MILLION AMERICANS Though transplants o er hope for approximately live with heart failure ... 2,000 advanced heart failure (AHF) patients each 2,000 advanced2 heart failure (AHF) patients each he American Heart Asso- to capture the stories of real LVAD recip- ... approximately year,2 more than 250,000 AHF patients have no ... approximately treatment option and are at high risk for repeated ciation reports that 50,000 ients - both to celebrate them and to treatment option and are at high risk for repeated 50% will die hospitalization, poor quality of life and even death. 3 to 100,000 advanced heart make other heart-failure patients aware 50% will die hospitalization, poor quality of life and even death. 3 within 5 years failure (AHF) patients in the of LVADs as a treatment option.” 1 T of diagnosis.1 United States could benefit from a left Through the "Thanks to an LVAD" ventricular assist device (LVAD) - a Video Contest website (www.Thank- mechanical device that is designed to sLVAD.com), anyone who has received restore blood flow throughout the body an LVAD is invited to submit a short when the heart is too weak to pump video (30 seconds or less) in which they blood adequately on its own. (An LVAD are joined by at least one friend or loved is also commonly referred to as a “heart one sharing what they believe is the best pump.”) Without an LVAD, AHF thing about the recipient having received patients could have poor prospects for an LVAD. survival and significantly limited life- “We’re not looking for anything fancy,” styles. Unfortunately, LVAD awareness said Packard-Milam. “Record the video is low among both patients and phy- on your iPhone, iPad or digital home TELL YOUR sicians, and patients often die without video camera. The important thing is to LVADS ever knowing that an LVAD may have share your story.” OFFER HOPE STORY been a treatment option for them. Every video entry will trigger a $100 TO Up to 100,000 advanced heart failure ANTO Mended Hearts, Inc. is actively donation to Mended Hearts from St. Up to 100,000 advanced heart failure AN LVAD... patients could benet from a left ventricular thanks LVAD... working to improve awareness and edu- Jude Medical, which is sponsoring the patients could benet4 from a left ventricular thanks assist device (LVAD),4 which helps circulate blood cation around all heart failure treatment cost of the campaign. Based on participa- assist device (LVAD), which helps circulate blood Video Contest when the heart is too weak to pump blood Video Contest options, including LVADs. In mid-Feb- tion, grants and donations could total as when the heart is too weak to pump blood Tell the LVAD story of you or a loved one! adequately on its own. Many heart failure patients Raise money for heart failure awareness ruary, Mended Hearts launched a new, much as $25,000. are unaware of LVADs as a treatment option, and Raise money for heart failure awareness national contest called “Thanks to an Contest entries will be accepted until are unaware of LVADs as a treatment option, and and help inspire others with the disease. report a lack of LVAD education and resources. To learn more, visit www. ThanksLVAD.com LVAD” to recognize individuals who are 11:59 p.m. Pacific Time on April 12, report a lack of LVAD education and resources. To learn more, visit www. ThanksLVAD.com 5 living with LVADs and help educate and 2016. A panel of judges will select five 5 Contest Dates: Advanced Heart Failure one-year survival rate: n February 16 - April 12, 2016 inspire others with AHF. winning videos based on specific criteria. n February 16 - April 12, 2016 80% n Five winners will be announced in June 2016 “Advanced heart failure is an extremely Winners will be highlighted through with80% an with an Video Entry: frightening and debilitating condition media and social media campaigns to LVAD Video Entry: LVAD n 30 seconds or less featuring an LVAD with very few treatment options,” said help educate others. recipient and at least one friend or family member Michele Packard-Milam, CAE, executive Submit a video, learn more about heart 17% n Mended Hearts will receive a $100 donation from without17% an St. Jude Medical for each eligible video entered* director of Mended Hearts. “Studies have failure, LVADs and contest rules by going without an St. Jude Medical for each eligible video entered* shown that LVADs can help extend the to www.ThanksLVAD.com today. We LVAD * St. Jude Medical will make a maximum grant and donation of up to $25,000 to Mended Hearts for all components LVAD * St.of thisJude contest, Medical including will make donations a maximum received grant from and contestdonation entries of up and to $25,000 donations to onMended behalf Hearts of winners. for all components lives of some heart-failure patients and look forward to hearing your story! of this contest, including donations received from contest entries and donations on behalf of winners. improve their quality of life, but there 1. American Heart Association, HeartMate II: A www.ThanksLVAD.com #ThanksLVAD is not enough awareness about these Reliable Destination; Feb. 2010 Complications of LVAD surgery are similar to the potential complications of any open heart surgery procedure. 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Heart ofdisease the UNOS and registry.stroke statistics—2013 Clin Transpl. 2008:35-43 update: a report from the American Heart Association. Circulation. 2013;127:e6–e245. 2 3 EverlySlaughter, MJ. CardiacMS, Rogers, transplantation JG, et al. Advanced in the United Heart States: Failure an Treated analysis with of Continuous-Flowthe UNOS registry. Left Clin Ventricular Transpl. 2008:35-43Assist Device. N Engl J Med. 2009 Dec 3; Vol 361:2241-2251 3 HEARTBEAT MARCH/APRIL 2016 4 AmericanSlaughter, Heart MS, Rogers, Association, JG, et HeartMate al. Advanced II: AHeart Reliable Failure Destination; Treated with Feb. Continuous-Flow 2010 Left Ventricular Assist Device. N Engl J Med. 2009 Dec 3; Vol 361:2241-2251 14 4 5 McIlvennanAmerican Heart CK, MagidAssociation, KH, Ambardekar HeartMate II:AV, A Thompson Reliable Destination; JS, Matlock Feb.DD, Allen2010 LA. Clinical Outcomes Following Continuous-Flow Left Ventricular Assist Device: A Systematic Review. Circ. Heart Fail. Oct 7 2014. 5 McIlvennan CK, Magid KH, Ambardekar AV, Thompson JS, Matlock DD, Allen LA. Clinical Outcomes Following Continuous-Flow Left Ventricular Assist Device: A Systematic Review. Circ. Heart Fail. Oct 7 2014. RaisingRaising Awareness, Awareness,

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Risks Risks may may include include blood blood clots, clots, bleeding, bleeding, infection, infection, device device malfunction, malfunction, right right heart heart failure failure or death. or death. 1 Go1 AS, Go Mozaffarian AS, Mozaffarian D, Roger D, Roger VL, Benjamin VL, Benjamin EJ, Berry EJ, Berry JD, et JD, al. et Heart al. Heart disease disease and strokeand stroke statistics—2013 statistics—2013 update: update: a report a report from from the American the American Heart Heart Association. Association. Circulation. Circulation. 2013;127:e6–e245. 2013;127:e6–e245. 1 1 2 EverlyGo2 AS, EverlyGo MJ.Mozaffarian AS, Cardiac MJ.Mozaffarian Cardiac transplantation D, Rogertransplantation D, Roger VL, Benjamin VL, in theBenjamin in United the EJ, UnitedBerry EJ,States: Berry JD,States: an et JD, analysisal. an et Heart analysisal. Heart ofdisease the ofdisease UNOS the and UNOS registry.strokeand registry.stroke statistics—2013 Clin statistics—2013 Transpl.Clin Transpl. 2008:35-43 update: 2008:35-43 update: a report a report from from the American the American Heart Heart Association. Association. Circulation. Circulation. 2013;127:e6–e245. 2013;127:e6–e245. 2 2 3 EverlySlaughter,3 EverlySlaughter, MJ. CardiacMS,MJ. Rogers,CardiacMS, transplantation Rogers, JG,transplantation et JG, al. et Advanced al.in theAdvanced in United the Heart United Heart States: Failure States: Failure an Treated analysis an Treated analysis with of with Continuous-Flowthe of UNOS Continuous-Flowthe UNOS registry. registry. Left Clin VentricularLeft Transpl.Clin Ventricular Transpl. 2008:35-43Assist 2008:35-43Assist Device. Device. N Engl N EnglJ Med. J Med. 2009 2009 Dec 3;Dec Vol 3; 361:2241-2251 Vol 361:2241-2251 3 3 4 AmericanSlaughter,4 AmericanSlaughter, Heart MS, Heart Rogers,MS, Association, Rogers, Association, JG, et JG, HeartMate al. et AdvancedHeartMate al. Advanced II: AHeart ReliableII: AHeart ReliableFailure Destination; Failure Treated Destination; Treated with Feb. withContinuous-Flow Feb.2010 Continuous-Flow 2010 Left VentricularLeft Ventricular Assist Assist Device. Device. N Engl N EnglJ Med. J Med. 2009 2009 Dec 3;Dec Vol 3; 361:2241-2251 Vol 361:2241-2251 MARCH/APRIL 2016 HEARTBEAT 4 4 15 5 McIlvennanAmerican5 McIlvennanAmerican Heart CK, Heart Magid Association,CK, MagidAssociation, KH, AmbardekarKH, HeartMate Ambardekar HeartMate II:AV, A Thompson ReliableII:AV, A Thompson Reliable Destination; JS, Destination;Matlock JS, Matlock Feb.DD, Feb.Allen2010DD, Allen2010 LA. Clinical LA. Clinical Outcomes Outcomes Following Following Continuous-Flow Continuous-Flow Left VentricularLeft Ventricular Assist Assist Device: Device: A Systematic A Systematic Review. Review. Circ. Circ.Heart Heart Fail. Fail.Oct 7 Oct 2014. 7 2014. 5 McIlvennan5 McIlvennan CK, Magid CK, Magid KH, AmbardekarKH, Ambardekar AV, Thompson AV, Thompson JS, Matlock JS, Matlock DD, AllenDD, Allen LA. Clinical LA. Clinical Outcomes Outcomes Following Following Continuous-Flow Continuous-Flow Left VentricularLeft Ventricular Assist Assist Device: Device: A Systematic A Systematic Review. Review. Circ. Circ.Heart Heart Fail. Fail.Oct 7 Oct 2014. 7 2014. EXTREME MAKEOVER: LIFE AFTER A HEART ATTACK Three Mended Hearts members share how their heart attack prompted major lifestyle changes. By Heather R. Johnson

16 HEARTBEAT MARCH/APRIL 2016 Mike Anthony nearly died from a eart attack survivors face heart attack at age a host of challenges after they 40. As a film- location manager, come home from the hospital. he used to spend Not only are there procedures 16-hours a day on to recover from, there may also the set of films like be new medications to manage, Pride & Glory, which starred Colin Farrell. and depression, fear and anxiety Hto wrestle with. On top of all that, the patient’s doctor may also recommend Anthony has spent drastic lifestyle changes. the eight years For many patients, it’s those lifestyle since his heart attack paying close changes that are the hardest to conquer. attention to his diet It’s not easy for anyone to overhaul their (it’s plant-based) diet, quit smoking or start an exercise and committing to consistent work- routine, and yet some heart patients are outs. He’s run four tackling all of these at the same time. marathons since his For heart attack survivors, though, these heart attack. changes are critical to reducing their risk of a second heart attack. By focusing on what’s to be gained — more energy, weight loss, a healthy heart — people can, over time, make the changes that lead to better health and longevity. Here are three Mended Hearts members who overhauled their lifestyles. Let their stories inspire you to Doctors implanted four stents total. “I I truly EXTREME thought my life was over,” he says. “The make those healthy changes you may be believe your avoiding. doctor said I had severe coronary artery disease. I didn’t want to accept that fate.” body can Mike Anthony: From Determined to slow the progression heal itself if overweight and overworked of his disease, Anthony entered cardiac you eat well, MAKEOVER: to vegan marathoner rehabilitation and studied plans outlined engage in Mike Anthony, a member of Mended by Drs. Dean Ornish, Caldwell Esselstyn Hearts Chapter 140 in Bergen County, and Joel Furman. “They all emphasize a physical N.J., had a near-fatal heart attack in plant-based diet — fruits and vegetables, activity LIFE AFTER A 2007, not long after his 40th birthday. high fiber, no meat or dairy, and little or and rest. While working stressful 14- to 16-hour no fat,” Anthony says. — Mike days as a film location manager, Anthony He understood the benefits of veganism, gained 80 pounds and exercised only but it took time for him to fully adapt to Anthony sporadically. After finishing a long stint the diet and the lifestyle. “When I heard HEART ATTACK managing the film What Happens in about athletes like Rich Roll and Scott Vegas, Anthony got his wake-up call: a Jurek, I realized you can be vegan and heart attack. strong,” he says. “Then I could accept it.” “My heart stopped when they were get- With two of America’s top ultra ting me ready for emergency stenting,” says endurance athletes as inspiration, Anthony. “It was a very shocking morning.” Anthony adopted a plant-based diet and

MARCH/APRIL 2016 HEARTBEAT 17 Photos courtesy of Paul Maher

When Paul Maher started running. He lost all of those 80 About eight days after an ambulance isn’t training for a triathlon, he spends pounds (give or take a few) and has com- rushed Maher to the hospital, surgeons at least 30 minutes pleted four marathons and numerous half performed quintuple bypass surgery. A a day with either a marathons. In April, he will run his first few days later, they implanted a defibril- P90X workout or 50-kilometer race. “I’m not winning these lator. Two weeks post-heart attack, some other activity. races, but it feels so good to be healthy,” Virginia Hospital in Arlington, Va., he says. discharged Maher with a lengthy list of Anthony still works long days, but prescriptions and advice. Now what? maintains a more reasonable schedule Maher quickly fell back into his usual with less pressure. His cholesterol, routine. He quit smoking, but only formerly at 325, is down to normal levels. moderately cleaned up his diet. He did The biggest Junk food is a distant memory. “I don’t not, however, stop drinking, which later obstacle crave the old stuff,” he says. “I crave a big triggered symptoms of atrial fibrillation salad every day.” (Afib). The second Afib episode required was accept- For those who struggle to change a hospital stay. “That was the turning ing the fact their diet and start exercising, Anthony, point,” he says. “I realized that I was the that I had to always willing to help his Mended only one responsible for my health. I’ve change. Hearts community, says to give it time. got to do this.” “As I began to feel better, it got easier,” He immediately overhauled his eating — Paul he says. “I truly believe your body can habits to a diet of mainly fresh vegetables Maher heal itself if you eat well, engage in and fruits with few processed foods. He physical activity and rest.” also started exercising six days a week. “When I met my wife, I didn’t own tennis Paul Maher: From take-out shoes,” he says. to clean eating king That soon changed, as Maher spent He drank, smoked, didn’t exercise and had up to an hour a day cycling, running and heart disease in his family, but at age 41, sometimes swimming. He started enter- Paul Maher showed no signs of heart dis- ing sprint triathlons and 5K running ease, until he went into full cardiac arrest events. “Always having a goal helps me at home. “It was a perfect storm,” he says. stay active,” he says.

18 HEARTBEAT MARCH/APRIL 2016 When he’s not training for an event, he spends at least 30 minutes a day with either a P90X workout or some other activity. Regular exercise and a little less overtime helps him keep stress at bay. Eight and a half years post-heart attack, Maher takes only 10mg of Lipitor and aspirin. Although Maher’s young children only know their healthy dad, the shift didn’t come without effort. “The biggest obstacle was accepting the fact that I had to change,” he says. “I tried

to skirt the lines of just doing enough, Photo courtesy of Shirley Kell eating healthy just enough, only drinking After quadruple bypass surgery in 1997, sometimes. I realized that’s not enough. I Shirley Kell made dramatic lifestyle had to fully commit to be healthy.” changes: reading food labels, counting The GoToGuide on calories and walking on the treadmill Heart Attacks

for an hour a day. Kell, who stays busy A simple guide for patients and caregivers Shirley Kell: New year, new life • The signs and symptoms of a heart attack • How heart attacks are treated with her granddaughters, says that out • What to do if you think you’re having a heart attack • Where to find more Shirley Kell rang in 1997 with a heart of all the changes she made, managing resources for patients and caregivers attack. She had no symptoms but stress was the most difficult. knew something didn’t feel right. Dr. James O’Neill, of Clarkston Medi- volunteering for the American cal Group in Clarkston, Mich., did Heart Association, Mended “every heart test known to man,” Hearts and organizations that she says, but couldn’t find anything help the homeless. wrong. And then a blood enzyme test With her life streamlined, Kell came back positive. Three days later, is beginning to renew her focus she had quadruple bypass surgery. on diet and exercise. She recently The GoToGuide on Heart When Kell got home from the hos- dove into a 21-day challenge that Attacks — provided with pital, she went into a lifestyle change requires lots of vegetables and this issue of Heartbeat frenzy. “I read every label in the grocery lean protein and no dairy, grains, and online at www. store, recorded every calorie I ate and sugar or fruit. She also spends MendedHearts.org — is a walked on a treadmill every day for an lots of time in her garden. “I do simple guide for patients hour,” Kell says. She stayed in cardiac everything I did before except and caregivers. Learn the rehab for nine-and-a-half years. shovel snow,” she says. signs and symptoms of a Over time, Kell wore out the belt on Of all the challenges, however, heart attack, how heart her treadmill. She later laxed a bit in learning how to manage stress attacks are treated, her strict, low-fat, low-calorie diet. She took the most focus. “There’s so what to do if you think gained back most of the 50 pounds she much stress for anybody who you’re having a heart lost. Yet, she redefined her life in other works and raises kids,” she says. “I attack, where to find ways, letting go of an unhealthy rela- love my solitude now. I love going resources and more. tionship and retiring from her longtime to lunch or dinner with friends, The GoToGuide is made job at General Motors. Kell’s kids, who but home is my sanctuary. And possible by our sponsor, she raised as a single mom, grew up and helping others makes a world of AstraZeneca. gained some independence. She started difference.”

MARCH/APRIL 2016 HEARTBEAT 19 A Matter of Time, Life and Death

Gwyneth danced all the time, her mother Gwyneth Griffin’s death may says. Her favorite style was Irish dancing. have been prevented had others been equipped to take quick action. By Heather Elise Duge Photo courtesy of the Griffinfamily

20 HEARTBEAT MARCH/APRIL 2016 irst, there was the short- the work of the ness of breath. It happened on heart and lungs. an ordinary day for 12-year-old Ultimately, it F Gwyneth Griffin of Stafford, Va. was determined She had a mild heart murmur and was that Gwyneth suf- born with a congenital heart defect — bicus- fered a devastating pid aortic valve with stenosis — but she saw and unrecoverable her cardiologist regularly and was cleared brain injury caused to do all the activities she loved: ballet, jazz, by the amount of

lyrical and her favorite, Irish dancing. time that passed Photo courtesy of the Griffinfamily “Gwyneth could dance all day long, no after she collapsed. Gwyneth was matter where she was — at the grocery She passed away in 2012 at the age of 13. known for her big store, at school or in her room at home,” “All of this was because, in the period heart and having a her mother, Jennifer Griffin, says. of time between her collapse and my smile for everyone. Gwyneth’s cardiologist thought the arrival on the scene, no one did any- Here, she sits with her parents and shortness of breath could be from the thing,” Joel says in an American Heart little sister, Ainsley. demands of the middle schooler’s busy Association video about his daughter. schedule. Several months later, Gwyneth and her father, Joel, attended a healthy CPR Training, AEDs teen-living event at her middle school. Are Essential Joel went to watch his younger daughter Gwyneth’s story is a parent’s at field day, while Gwyneth joined her worst nightmare. Healthy, active friends at the track. After she ran one lap teens aren’t supposed to collapse around the track, Gwyneth collapsed. from sudden cardiac arrest No one was able to perform CPR, so her (SCA). When the unthinkable friends immediately sent students to find does happen, time is of the the principal, a nurse, an automatic external essence. Quick action in the form defibrillator (AED) and Gwyneth’s dad. of CPR or the use of an AED “My husband arrived at the scene to can help prevent sudden cardiac find Gwyneth with no pulse,” Jennifer arrest from causing sudden The Mended Little says. Normally, the school had an AED at cardiac death (SCD). Had those HeartGuide is a the back of the gym. That one couldn’t be around Gwyneth started CPR valuable, one-of-a-kind found, so someone ran to get the school’s immediately, her story may have resource guide for second AED, which was in the front office. turned out differently. families of children with When Joel got the AED, he followed “More widespread training in congenital heart defects. the instructions and shocked Gwyneth CPR and availability of AEDs The free digital publi- twice. She regained her pulse. remarkably reduce the chance cation provides reliable Gwyneth spent seven weeks in the of SCA becoming SCD,” says information, support, hospital as physicians worked to repair Dr. William Scott, Professor educational resources her organ systems. Her heart wasn’t of Pediatrics/Cardiology and and more and was strong enough for her to be taken off Associate Vice Chairman at UT developed in partnership of sedation. The only way to give her Southwestern Medical Center with St. Jude Medical. a fighting chance was to put her on in Dallas. (Dr. Scott was not Get it today at www. Extracorporeal Membrane Oxygenation involved in Gwyneth’s care.) MendedLittleHeartGuide.org. (ECMO) — a machine that takes over “Research has already shown that

MARCH/APRIL 2016 HEARTBEAT 21 Sudden Cardiac Arrest in CHD Patients SCD occurs much less often in commu- illiam Scott, M.D., who is a Profes- nities where there is widespread training Wsor of Pediatrics/Cardiology and in CPR and readily available AEDs.” Associate Vice Chairman at UT South- The Griffins are working hard to western Medical Center in Dallas, says increase CPR training and the number there are many causes of sudden cardiac of AEDs in communities. Their work has death in children who have congenital resulted in Gwyneth’s Law, which was heart defects. The causes generally fall passed in Virginia in 2013. into one of two groups: problems with Photo courtesy of Children’s Health William Scott, M.D. Gwyneth’s Law has three components: the heart’s structure, or with its rhythm. • AED placement in all schools Structural problems “include complicated defects at birth, • CPR training for teachers such as hypoplastic left heart syndrome, and those that present • CPR training as a high school gradua- later in life, such as hypertrophic cardiomyopathy and Marfan tion requirement syndrome,” says Dr. Scott, who works at Children’s Health. The governor of Virginia signed the law Regarding the second group, he says, “Most of the arrhyth- in March 2013, with the first two compo- mias are inherited, such as long QT syndrome, although some nents going into effect immediately. Since are not typically inherited — an example being Wolff-Parkin- the law was passed, four lives have been son-White syndrome.” saved as a result of people receiving CPR Also, arrhythmias may arise late after surgery for CHD. “For training. The student-training compo- example, patients with Tetralogy of Fallot may be at higher risk nent of Gwyneth’s Law is on track to be for sudden death many years after surgery,” he explains. enacted in Virginia in the 2016-17 school year, and the state should have 75,000 trained individuals by next year. So far, 27 Know the Warning Signs states require students to be CPR-trained. The New HeartGuide Is Here! One of these is Maryland, where a child of Heart Disease saved his sibling at home within one week o prevent Sudden Cardiac Death in children with Congenital of CPR training. For new heart patients, life can quickly become THeart Defects, early detection is key. If an individual is known In December 2015, Gwyneth’s Gift overwhelming. They hear unfamiliar medical terms, to be at high risk for SCD, a defibrillator (ICD) can be implanted. Foundation — the actionable arm of undergo complicated procedures, take new medi- Parents should ensure that their children have routine checkups The HeartGuide app is Gwyneth’s Law — officially became a cations and begin making major lifestyle changes. with a primary care doctor and be aware of these potential 501c3 non-profit organization. Through But here’s the good news. Mended Hearts helps patients navigate now available for free warning signs of heart disease: the Foundation, Jennifer and Joel focus through the new path life has put them on — and the new HeartGuide • Family history of premature death (sudden or otherwise) on helping underprivileged and rural is their map. Inside the guide, patients will find easy-to-understand in the app store. information on heart disease, risk factors, common tests and therapies, • Family history of heart disease in surviving relatives, schools gain access and funding for significant disability from cardiovascular disease in close depression and medications. There are also sections for caregivers, AEDs. They also continue to advocate for tools and notes, and glossary and resources. It’s even available online relatives younger than 50 years, or specific knowledge of the the awareness and importance of CPR in an interactive format and will soon be offered as an app for smart occurrence of conditions (i.e., hypertrophic cardiomyopathy, training for everyone. Scholarships will phones and tablets. long QT syndrome, Marfan syndrome or clinically important be provided to high school students and What’s more, the HeartGuide was created by the Mended Hearts Order copies of the HeartGuide for your chapter arrhythmias) will one day include medical students medical advisory board with input from members — patients like Dr. Fredonia Williams, Southern Regional Director and National Visiting in the Officer Portal at www.mendedhearts.org. • Personal history of heart murmur studying cardiology, traumatic brain • Personal history of systemic hypertension Chair. As a heart failure patient, she understands the fear that comes There is no cost for the guides or for shipping. injury and neurology. with a new diagnosis. “The HeartGuide is indeed the journey to a healthy • Personal history of excessive fatigue “Gwyneth’s death is hard to live with,” heart,” she says. “This is where it starts.” • Personal history of syncope, or excessive/progressive short- Jennifer says. “We will always wonder ness of breath or chest pain/discomfort, particularly if present if she would have lived had things been with exertion different. It only takes one person to step The new HeartGuide is made possible by our sponsors: Amgen Cardiovasclar, AstraZeneca, up and do something to save a life.” Bristol-Myers Squibb, Pfizer, Daiichi-Sankyo Lilly, Gilead, Janssen and Novartis Pharmaceuticals.

22 HEARTBEAT MARCH/APRIL 2016 The New HeartGuide Is Here!

For new heart patients, life can quickly become overwhelming. They hear unfamiliar medical terms, undergo complicated procedures, take new medi- The HeartGuide app is cations and begin making major lifestyle changes. But here’s the good news. Mended Hearts helps patients navigate now available for free through the new path life has put them on — and the new HeartGuide is their map. Inside the guide, patients will find easy-to-understand in the app store. information on heart disease, risk factors, common tests and therapies, depression and medications. There are also sections for caregivers, tools and notes, and glossary and resources. It’s even available online in an interactive format and will soon be offered as an app for smart phones and tablets. What’s more, the HeartGuide was created by the Mended Hearts medical advisory board with input from members — patients like Dr. Order copies of the HeartGuide for your chapter Fredonia Williams, Southern Regional Director and National Visiting in the Officer Portal at www.mendedhearts.org. Chair. As a heart failure patient, she understands the fear that comes There is no cost for the guides or for shipping. with a new diagnosis. “The HeartGuide is indeed the journey to a healthy heart,” she says. “This is where it starts.”

The new HeartGuide is made possible by our sponsors: Amgen Cardiovasclar, AstraZeneca, Bristol-Myers Squibb, Pfizer, Daiichi-Sankyo Lilly, Gilead, Janssen and Novartis Pharmaceuticals. • Mended Hearts Chapter Spotlight • Mended Little Hearts Group Spotlight VITALS • And More... PEOPLE, EVENTS AND NEWS FROM MENDED HEARTS AND MENDED LITTLE HEARTS CHAPTERS AND GROUPS

MENDED HEARTS CHAPTER SPOTLIGHT Strong Link to Hospital Is Key to Mission Viejo Chapter’s Success

or Dennis Galloway, serv- himself has been an accredited visitor ing as president of Mended for eight years. Hearts Mission Viejo Chap- “When you visit a patient and they F ter 216 is more than just a see you walking in — knowing that you job. It’s personal. have walked in their shoes and that you “I got involved with Mended Hearts are back at it and healthy — it gives back in 2008 after having a quadruple them hope,” Galloway says. bypass and aortic valve replacement,” The chapter meets monthly and hosts Galloway says. “When I was in the an annual holiday gala as a thank you hospital, I received a visit from Mended event for its many volunteers. It raises Hearts and I appreciated it so much, as money through an annual fundraiser did my family. I wanted to give — Night Out with the Angels, which back to my community.” is held with the Los Angeles Angels of This year, the California Anaheim baseball team. Chapter 216 is chapter, which has 140 active also one of the beneficiaries of a large members, is celebrating its golf tournament held locally every year. 28th year. Members include Over the years, the chapter has those who have had a heart donated close to $100,000 worth of procedure themselves, as well equipment to the cardiac rehabilitation as family, caregivers and others center at Mission Hospital and has who are interested in heart provided several automated exter- disease and care. nal defibrillators (AEDs) to various The chapter has more than recreational centers and schools in 20 accredited visitors who do Orange County. The generous group Photos courtesy of Dennis Galloway several hundred visits each also awards a nursing scholarship Dennis Galloway, President, Mended year, along with hundreds of phone to a nurse in the cardiac CICU and Hearts, Chapter 216 calls and personal follow-ups with heart telemetry units and scholarships for patients at Mission Hospital. Galloway continued education for the hospital’s

24 HEARTBEAT MARCH/APRIL 2016 VITALS Photo courtesy of Mended Hearts Chapter 216

Mended Hearts, Chapter 216, Mission Viejo, Calif., donates AEDs to Capistrano Unified School District, Middle Schools. From left to right: Bryan Flynn, The LifeTrends Group; Dee Nangle, Mended Hearts, Vice Chair, Visitors; Dennis Galloway, President, Board of Directors, Mended Hearts; Josh Wellikson, Principal; Jeff Jones, Principal; and Jeff Gotro, Vice President, Board of Directors Mended Hearts, Chapter 216. cardiopulmonary rehab group each year. device companies, often present at the The chapter has a website (www. meetings. mendedhearts216.org) and a monthly “Our members love to learn about new newsletter, The Ticker Talker, where it technologies and solutions,” Galloway shares information about events, medical says. “Having knowledgeable industry advances, members and general heart leaders talk to our members is a big part health. Galloway credits the chapter’s of our educational piece.” success to its strong relationship with The Mission Viejo chapter has also Mission Hospital. mentored other area hospitals like St. “The nurses, surgeons and cardiologists Joseph Health’s St. Mary in Apple Valley, are all very supportive of our mission helping them develop their own Mended and very involved,” Galloway says. “We Hearts chapters. couldn’t do it without them and all of our Though this year marks the end of volunteers. It’s critical to build and keep Galloway’s term as president, he plans to those relationships and let people in the remain on the board of directors and will community know we are here for them.” continue visiting patients. The chapter holds its monthly meet- “I’ll never give up the visits,” Galloway ings at the hospital’s cardiac center and says. “The patients give back to us as various physicians and other specialists, much as we give to them. It helps us heal, as well as pharmaceutical and medical too.” — Scotty Fletcher

MARCH/APRIL 2016 HEARTBEAT 25 VITALS

MENDED LITTLE HEARTS GROUP SPOTLIGHT Social Media, Word- of-Mouth Spur MLH of West Michigan’s Growth

ended Little Hearts of plans to continue,

West Michigan, the state’s and also has many Photo courtesy of Jenna Wood only group, began in 2011 members participate “Many of our members when three moms of kids with in the Fifth Third River Bank Run in are active runners and M ask for sponsorships congenital heart defects found each other Grand Rapids. “Many of our members from friends, family on Facebook. Today, the group has grown to are active runners and ask for spon- and local businesses,” 250 members. sorships from friends, family and local says Jenna Wood, lead coordinator of MLH of “We really grew through word of businesses,” Wood says. “My husband ran West Michigan. mouth,” says Jenna Wood, lead coordinator in honor of our son.” of the group and one of its original mem- The group meets once a month, with bers. “We met with our local children’s presenters from Helen DeVos and the hospital and they agreed it was needed. University of Michigan Health System They really helped us spread the word.” each presenting twice a year on different Wood began her journey with MLH therapy options and various hospital pro- when her youngest son, Zachary, now 7, grams. For the past four years, the group was diagnosed in utero with a heart defect. has hosted a huge potluck dinner for “At the time, we knew no children with members in honor of Congenital Heart heart defects and we felt really alone,” she Defect Awareness Week. says. “When my son was three, I met two These kinds of events are important so other moms who were going through the that families and children can get to know same thing and lived in my area. We met each other, Wood says. “Families are very for dinner one night and decided to start relieved and happy to hear that there are our own group.” other people out there experiencing what Today, the group delivers Bravery Bags they are experiencing,” she says. “The kids to Helen DeVos Children’s Hospital filled get to know each other and so do their with a care notebook, puzzle books, play- siblings, which is important, too.” ing cards, a superhero pillow and a black Some of the hospital’s doctors and sharpie for kids to get “autographs” from nurses also attend the annual party, their doctors and nurses. The hospital staff allowing the kids to see them out in the gives the bags to patients having open-heart “real world” and realize that they are surgery and other procedures. There is also a people, too, Wood explains. prenatal Bravery Bag that includes an infant “Our hospitals recognize there is a need sleeper and hat, as well as information in our area and they are very supportive,” for parents so they are aware of the group Wood says. “Our goal is to raise awareness before they have the baby. and to let every family dealing with heart The Michigan group held its first 5K defects in Michigan know we are here to run/walk fundraiser this year, which it offer help, support and hope.”

26 HEARTBEAT MARCH/APRIL 2016 VITALS Gifts From the Heart

Special thanks to the following contributors for their gifts to Mended Hearts and Mended Little Hearts from

December 23, 2015 – February 26, 2016. IN MEMORY OF: Ms. Shirley Kell Mr. Ellas Doulerakis Jane Dempster Richard & Pamela Kienzle Ms. Tamara Patton Mr. Frederick Barrett Caridad Dixon Earl Halstead Marina Welch Mr. and Mrs. Samuel Kaiser Arthur Dornik Clara Wojanoski James & Sue Naffziger Mr. P. Gerald White Brenton Eastabrooks Richard C Rubalcava Richard & Cheryl Mr. David Darsch Charles Haberthur Hospelhorn John Falco Ms. Graciela Magnone Rita Haring James & Teresa Dooley James L. McKeeby, Jr. Mr. and Mrs. Betram Michele Heckman Lucille Feinstein C. Drouin Mended Heart Chapter #59 Brice Hendrickson Ms. Kim Wolfe Dr. and Mrs. Blaine Glad Richard Graham Nathaniel Hines Mr. David E. Price Lois Hinman Larry M. Hayes IN HONOR/RECOGNITION/ Ms. Robin Schlesinger Stacy Hodges Mark & Lynn Featherling CELEBRATION OF: Ms. Kathryn Jones Tammy Hubbard L.E. Williams Mended Hearts Chapter #379 Mr. & Mrs. Tyson Wollert Jessica Kachadourian Gerald Woley Gastonia, NC Paul Sutton and Dillon Kim Kay Swartzlander Cardiac Rehab Jennifer Wega Kathryn Krupowicz Class of 59 staff at Caromont GENERAL DONATIONS: Joseph Kurtz Jerry & Jean Abernathy Regional Medical Center Lucy Ames Tiffany Lin Jerry Abernathy & Family THANKS FOR GIVING: Karen Bradfield Feng Lin Ron & Helen Donoho Jo Ann Jackson Mindy Szelap Jun Liu David 7 Bette R Robert Derrick Woolbright Doris Campbell Colette Matz Ms. Martha Lovstad Keith & Cindy Kessler Stephanie Cutler Shannon Mccrudden Ms. Juanita Zuber David, Bill, Nathna Margaret Danner David Mihalik & Kellie Smith Mr. and Mrs. Madeleine Lee Jane Moore Stephen Hazen Nancy Geiler Amy Rudolph Misty Nail Mr. Sam Cardillo Joyce Hodge Linda Arstrong Barbara Nelson Mr. Robert W. Butler IV & Respiratory Care Bryant Aaron Arkady Nisman Mr. Robert Marsh Kieth & Bonnie Livesay Sabiha Abbas Shufang Niu Mr. George Bickley Mr. & Mrs. Danny Hugo Natalya Alexander William O’Connell Mr. Edward Melville Brent & Michelle Carey Baros Caryn Parlavecchio Mr. Peter Hanson Swartzlander Andrea Bloodworth Kristen Patellis Ms. Shelli Matiscik Mark & Kristen Houser Maria Castellan Patricia Pitts Mrs. Joan Staley Stephanie & De La Cerda Sudipta Rao Mr. and Mrs. Jerry Herring Christopher Richer Chun-Lan Chang Pallav Raval Mr. Glenn Griffin Dr. Billy & Florence Cathryn Clary Valancia Reddick Heyduck Mr. and Mrs. Eric Couture Catherine Rider Eugene Becker Connie Butler Robert Cummings Cynthia Riggins Mr. Clemence Mendoza Jana Stewart Emmanuelle Cunha Kendra Rose Mr. Jonathan Held Dave Anderson Martin Debenedetto Gail Rybski Mr. Philip Grimaldi Ms. Dawn McCleer Diane Dekovner Adwoa Sanderson Mr. William T. Jorgensen

MARCH/APRIL 2016 HEARTBEAT 27 VITALS

Maria Sankner Jack and Elaine Hughes IN HONOR/RECOGNITION/ ROAR N’ RUN Michelle Santora Ronald Mason CELEBRATION OF: DONATIONS: Jeffry Sargeant Sasha Vanderhoof Mathew Kubik Susan Yadamec- Carolyn Schlitt Novartis Graham Goodfellow Baumgard Dance Thomas Schoemer Matthew Aldridge Tess Callard Christina Gray Jean Scott Carol Duffy Oliver Loeb GENERAL DONATIONS: Susan Severin William Ingram Shrley Catron Sioux Empire Mended Sylvia Shubert Rebecca Jolley Carol Catron Little Hearts Kimberly Siu Martin Lefkowitz Mary Jane & Sherman Man- Tina Hutchens Elizabeth Stewart Jorge Luna chester, Jr. Rebecca Cannady Kurt Stuessi Gail Myburgh Sarina J. Lester Helomics Company Betty Tang Kimberly Siu Big EZ Network, LLC Gary Hildebrandt Jose Taveras United Way – National Remi McCrite Andrew O’Brien Paolo Tombesi Capital Area BRAVERY BAG Courtney Oswald Dolores Urban Clarkston-Potomac DONATIONS: Nadine Neumeister Group, Inc. Robert Vernon Hutchens Chevrolet Inc. Suzanne Jeren Margaret Wernsing Jane Matheny Elliuss Enterprises, Inc. Michael Winters Linda Goff For Elizabeth Uss Keith Wonnacott In honor of Jude Clark Sally Whitaker Melanie Woods In honor of Big EX Network LLC on Sawyer Dorsey Behalf of Remi McCrile Shari Wu MENDED LITTLE HEARTS Melinda Therkalsen Anthony Zizzo Tita Hutchens Fund Cara Gardner John Marchetti G.E. & Deborah Webster Mari Schieber IN MEMORY OF: Bill Harris Jennifer Wild Bears Local #1 Inc. George Ireland Nick Antourakis Larry Hayes James and Annie Slonaker Maureen Curtis Historical Hearts Chapter Anniversaries 50 Years March/April 2016 • Rochester, NY – Chapter 50 – Northeast Region 5 Years • Columbus, OH – Chapter 371 – Midwest Region Mended Little Hearts Anniversaries 10 Years March – May 2016 • Woonsocket, RI – Chapter 338 – Northeast Region 5 Years • Portland, ME – Chapter 339 – Northeast Region • Mended Little Hearts of the Rocky Mountains - Denver, 15 Years CO · Southwest Region • Rancho Mirage, CA – Chapter 281 – Western Region • Mississippi Gulf Coast Mended Little Hearts - Gulfport, 25 Years MS · Southern Region • Lima, OH – Chapter 111 – Central Region 40 Years • Washington, D.C. –Chapter 94 – Mid-Atlantic Region

28 HEARTBEAT MARCH/APRIL 2016 VITALS Mended Hearts — Eight Regions

Mended Hearts is the largest cardiovascular peer-to-peer support network in the world. We have 300 chapters and satellites in nearly every state. Our community-based organization is built upon the principles of service, charity and partnership. To find out more about our services and to locate a chapter near you, reach out to one of our Mended Hearts Regional Directors listed below or go online at mendedhearts.org.

WA VT MT ND ME NH OR MN ID MA SD WI NY WY RI MI CT IA PA NV NE NJ OH DE UT IL IN CA CO WV MD KS MO VA KY WASHINGTON, NC DC TN AZ OK NM AR SC AK TX MS AL GA LA National Office HI Dallas, Texas PR FL Mended Hearts National Office 1-888-HEART-99 [email protected]

Mended Hearts Regional Directors 2015-2017 Mended Little Hearts ARDs Western Central Northeast: Julia Rowbotham Ronald Manriquez Jana Stewart [email protected] • (610) 306-4061 (562) 531-0701 (812) 963-6019 Mid-Atlantic: Lauri Tamberrino [email protected] • (434) 531-6250 [email protected] [email protected] Southern: Dana Hageman Rocky Mountain Southern [email protected] • (501) 454-6667 Tina Hoover • [email protected] • (336) 689-8822 Robert Oberfield Dr. Fredonia B. Williams Southwestern: Candida Schendel (480) 860-1247 (256) 837-7354 [email protected] • (210) 213-6140 [email protected] [email protected] Central: Leslie Sams Midwest Northeast [email protected] • (859) 559-5580 Rocky Mountains:* Angie Wickersham Cathy Byington Frank Cecco [email protected] (605) 339-2431 (201) 265-9296 (970) 433-2199 [email protected] [email protected] Western: Nicole Sanchez Southwest Mid-Atlantic [email protected] • (925) 362-1489 Midwest: Jenna Kidd Lynn T. Berringer Gerald Kemp, Jr. [email protected] • (618) 246-7876 (936) 597-4019 (803) 684-9512 *(including Colorado) [email protected] [email protected]

MARCH/APRIL 2016 HEARTBEAT 29 The Mended Hearts, Inc. 8150 N. Central Expwy., M2248 Dallas, Texas 75206-1815

2016 Conference Schedule

Mended Hearts/Mended In 2016, the Mended Hearts National Education Little Hearts Conferences and Training Conference will be “on the road” in six Rocky Mountain Region May 15-16 locations across the United States. With multiple Scottsdale, Arizona locations, the conference will reach more heart Western Region June 3-4 patients, caregivers and families than ever. We Mission Viejo, California Mid-Atlantic Region hope you’ll save the date and join us in this exciting June 23-24 journey as we gather across the U.S. Check our Raleigh, North Carolina Central/Midwest Region website, www.mendedhearts.org, for details. July 21-23 Rosemont, Illinois Southwest Region September 23-24 Austin, Texas Southern Region October 28-29 Huntsville, Alabama