10 Stories of Care

10 OFCARE

STORIES

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THE AMERICAN HEART ASSOCIATION OF THE LEHIGH VALLEY PHOTOGRAPHY BY ALISON CONKLIN

A LETTER FROM OUR

EXECUTIVE DIRECTOR DEAR FRIENDS OF HEART, I personally want to take a moment to thank you for your continued dedication to the American Heart Association of the Lehigh Valley. The last year has proven to be difficult, trying, challenging and a space for true innovation. Our warmest thanks for your support of the American Heart Association and American Stroke Association’s mission to improve the quality of lives in our community. While the Association has accomplished so much to reduce the impact of cardiovascular diseases and cerebrovascular diseases, heart disease and stroke remain the number #1 and #2 causes of death globally, despite the pandemic.

1 in 3 That’s the number of women that are killed each year from cardiovascular and cerebrovascular diseases. But up to 80 percent of these events are preventable. The Go Red for Women campaign is not only about wearing red and sharing facts, but also encouraging women to stand together and take charge of their own heart and brain health.

Because when we stand together, we can change history and inspire all women to be heart healthy— for our mothers, daughters, sisters, and friends.

The American Heart Association’s signature women’s initiative, Go Red for Women, is a comprehensive campaign designed to increase women’s heart health awareness and serve as a catalyst for change to improve the lives of women globally.

As you read through the beautiful pages that follow, it is my honor to introduce you to 10 incredible women who define this last year in their daily lives. When we look back and remember 2020, I hope CARE is a word that we automatically associate with it. The year our frontline workers became heroes, the year our doctors and scientists paved life saving pathways and the year we stepped up for one another and became the people our hearts always knew we could be. These women are caregivers, they are strong advocates and they are insanely beautiful inside and out.

Welcome to this year’s Go Red For Women campaign.

xoxo,

WITH A GRATEFUL HEART

A bby Silfies

Executive Director American Heart Association Lehigh Valley

GRANDDAUGHTER

KANDYCE PETERSON

NINE T Y YE ARS YOUNG AND S T IL L AMA ZING!

Kandyce’s grandmother was experiencing weight gain and excessive fluid in her limbs.

Although her blood pressure was being managed, constant fluctuation made it difficult. She was diagnosed with congestive heart failure.

After a long drive to Virginia (sitting for five to six hours) her arms became extremely swollen and painful. Rushed to the hospital, doctors found a blood clot had traveled from her leg to her arm and she was put on blood thinners. She also got a pacemaker, placed on the right side of her chest instead of the left because of an earlier left-breast mastectomy. This placement required more monitoring for accuracy.

Today she still suffers from AFib, but is more functional and has more independence and energy than she ever expected.

Occupational therapy played a big role in her overall recovery as she is right-handed and had to re-learn how to function with her left hand.

She is now the oldest participant of a home study, where her cardiologist tracks her progress. Ninety years young and still amazing!

Being a caregiver, Kandyce has learned to be body conscious.

If something feels wrong, do not overlook it. Go to the doctor, get yearly check-ups and put fuel in the body—not junk. Be active.

And most importantly, always speak up if feeling uneasy about anything.

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Her mother taught her the need for patience. Heart health can be extremely scary. Caregivers must be able to understand and ease loved ones’ fears while simultaneously controlling their own fears. Caretakers also need empathy, because no matter how close they are to their loved ones, they will never understand exactly what they are going through. Staying educated and being involved in advocacy groups enables caregivers to ask the right questions at doctor’s appointments, get advice they never even thought of and feel relieved knowing they’re not alone.

SISTER

LAURYN GRAVES

HE ART HE ALT H IS A SERIOUS FAMILY ISSUE

Lauryn recalls arriving at her sister’s house to see her sprawled on the sofa with her hand on her heart, breathing heavily and having a concerning look on her face. This wasn’t the first time this had happened. In fact, this felt like the hundredth time.

These episodes started with a racing heartbeat, chest pain, lightheadedness and feeling like she would faint.

This day, her sister felt fortunate to be home. These episodes would occur anywhere and symptoms could appear and disappear quickly, or last for hours. Lauryn’s sister had symptoms as a child, but the episodes were infrequent and passed quickly. By age 30, the episodes were more frequent and longer in duration, requiring ER

visits to bring that heart rate down to a normal range. Diagnosed with supraventricular tachycardia, she underwent cardiac ablation but afterwards developed a rare side effect called Wenckebach, and all her original symptoms returned. Cryoablation remedied her condition.

Thirteen years later, her sister has a very healthy, active lifestyle. The sisters are extremely close, doing almost everything together. Heart health is a serious family issue, with many members suffering from heart attacks and stroke. Her sister's experience was a wake-up call for everyone. “I couldn’t imagine my life without my sister,” Lauryn says. “She’s one of the most important people in my life. We talk to each other

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10 times a day, so heart health quickly became a priority for us.”

Lauryn’s caregiver advice is to stay calm and seek the advice of professionals. Use trusted, reputable educational sources like the American Heart Association.

Taking time to relax and recharge provides the energy to care for others. Finally, inject humor with every opportunity to keep the environment light. Many situations become overwhelming and stressful, but a laugh here and there can be exactly what the doctor ordered to stay positive.

SHANNON WALLACE SPOUSE & MOTHER

As a firefighter and substitute teacher, caregiving comes naturally to Shannon, or at least she thought it did. In 2013, Shannon found herself as the caregiver to her wife and three unborn girls. Mundane thoughts about the baby registry were quickly replaced with critical lifesaving decisions regarding their care and treatment.

Shannon’s wife, Pam, was put on bedrest and received surgery for preterm labor early in the pregnancy. Then the unexpected happened: two of the three girls were diagnosed in utero with twin-to-twin transfusion syndrome and congenital heart defects (hypoplastic left heart syndrome and Tetralogy of Fallot). Shannon changed instantly from not only a wife and mother but to a caregiver. Routines, work, sleep and relationships were disrupted as they made difficult decisions while traveling to Philadelphia and Miami seeking help and hope.

Unfortunately, Shannon and Pam lost one of their girls late in the second trimester and at 31 weeks the girls were born early. They spent months in the neonatal intensive care unit and Shannon spent weeks splitting her time, money and resources between both girls, Pam, work and the household they quickly had to leave behind.

After Pam and the girls were discharged, it was only days before they were headed back for the first lifesaving open heart surgery for her child with CHD. Caregiving never ends for parents of children with complex heart conditions. Shannon is finding ways to give back and help other parents while educating herself and advocating for her own little CHD warrior. She also recognizes the toll caregiving takes on the mind and body, because she herself has suffered from caregiving anxiety and PTSD. She says: “It’s so important to me that we also recognize how the American Heart Association helps caregivers with their own health and well-being considering the increased risk in heart disease we take on.”

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HEATHER LINDAMAN DAUGHTER (STROKE)

On September 25, 2015, Heather asked her mom to watch her eight-week-old daughter, Parker, so she could have one-on-one time and go out with her nine-year-old daughter, Reagan. Her mom happily agreed. By the time they returned, everyone was pretty beat and they decided to stay over.

Thank God they did. After Heather woke up the next morning, she heard her mom shouting “no” over and over again. She raced downstairs to find her mom sitting in her chair, thrashing her head and continuing to loudly say “no.” She thought she was dying.

HE AT HER ’S MOM SPEN T NE ARLY A A MONTH IN THE ICU. As Heather called 911, her mom’s eyes rolled back into her head, she started foaming at the mouth and lost consciousness. At the hospital, a doctor said her mom had suffered an aneurysm, which triggered a subarachnoid hemorrhage. In brain surgery to stop the bleed, platinum coils were inserted to clot the blood vessel.

Heather’s mom spent nearly a month in the ICU. When Heather visited, she helped her mom fix her hair. She brought in mashed potatoes because she craved them and brightened up her room with potted flowers. She also brought pillows and blankets from home and anything else her mom requested to make her stay more comfortable.

Heather is blessed that the powers that be placed her in her mom’s house that night, to make the critical call to save her life the next morning.

Still to this day, she is in awe.

Thankfully Heather’s children will grow up knowing their Gigi, and Heather gets more time with her mom. She is also grateful for the nurses, doctors and medical staff. Their fast actions are why her mom is still here today.

Her mom later said she remembered saying “no”—she was yelling because she wasn’t ready to die. She needed to live, shouting “no” to death.

Heather is so lucky she did.

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NIECE

JULIAROSE

ALWAYS S TAY POSITIVE AND NE VER GIVE UP HOPE.

Julia’s uncle suffered a massive widow-maker heart attack back in 2016 when he was leaving the gym. He was healthy, active and ate well—which is why this was such a shock to the entire family— and had no symptoms earlier on.

“I thought I heard wrong when my mom called to tell me what happened,” says Julia. “I said, no way, Uncle David? He's the healthiest guy I know!”

His survival was considered a miracle and although he was thriving on an LVAD (left ventricular assist device), he was determined to get a new heart.

Being 69 years old, the doctors

were concerned about his procedure due to his age, but in 2018 he persevered and underwent a successful heart transplant. After working hard to recover through therapy and adjusting to a few restrictions, he was quickly back to work, traveling, playing golf and just enjoying his everyday life!

Julia’s uncle is an inspiration to her. His strength and positive outlook have changed her perspective on life forever and have even made her and her family more conscious and aware of their own heart health. Julia’s father, his siblings and all their

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children get yearly checkups and have made “healthy habits” a priority. Making simple lifestyle changes such as exercising, eliminating salt and being aware of one’s numbers (cholesterol, blood pressure, etc.) can make a big difference in one’s overall heart health.

As a caregiver, Julia’s advice is to always stay positive and never give up hope. Where there’s a will, there’s a way!

SURVIVOR, MOTHER

ERINYAWORSKI

W YAT T WOUL D BE BORN WI T H HALF OF A HE AR T, BU T T HREE L IFE-SUS TAINING PROCEDURES WOUL D GIVE HIM A FIGH T ING CHANCE AT A NORMAL L IFE.

Erin was just six months old when diagnosed with supraventricular tachycardia.

When starting her own family, her unborn son, Wyatt, was diagnosed prenatally during a 20-week ultrasound. Erin heard the most difficult words from the doctor: “There is something wrong with the heart, but we don’t know exactly what it is.”

The next day a fetal echo officially diagnosed hypoplastic left heart syndrome (HLHS), a severe congenital heart defect in which the left side of the heart is underdeveloped. Wyatt would be born with half of a heart, but three life-sustaining procedures would give him a fighting chance at a normal life.

Wyatt, now four and half, had his third open heart procedure in June 2020. Right now, his care is just to be monitored. No one really knows what to expect with HLHS: the first “kids” who survived their three surgeries are just now in their early 30s. Erin is mindful of Wyatt’s cardiac activities, encouraging him to take breaks, to eat as healthy as a four-year-old will eat and enjoy life.

Wyatt amazes everyone.

Outside of a scar, no one would know he has a heart condition.

He attends preschool, keeps up physically with other kids, goes nonstop like the Energizer Bunny, adores his older sister (Alexandra) and throws caution to the wind.

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Erin also follows up regularly with a cardiologist. After two cardiac catheterizations and ablations in her early 20s, Erin has not had any signs of SVT since April 2004. She stays heart healthy with regular exercise, eating well, being mind/body aware and taking needed breaks, and enjoying life and time with her family, who are her entire world.

Erin’s caregiver advice is to build an excellent healthcare team.

Create a tight inner circle with people who are easy to talk to and easy to understand—people to serve as advocates in a room where caregivers might not be invited.

NIDHIMEHTA CARDIOLOGIST

As a practicing cardiologist, Nidhi has focused on taking care of cardiac conditions in women, such as spontaneous coronary artery dissection, with particular focus on conditions among pregnant women, such as preeclampsia, hypertensive disorders and peripartum cardiomyopathy. In addition, Nidhi concentrates on preventive cardiology, encompassing lipid and cardiometabolic management.

P YSIC AL WEL L-BEING C AN BE INE X T RIC ABLY L INKED WI T H MEN TAL & EMOTIONAL HE ALTH. Nidhi was attracted to cardiology as a specialized medical field because it seemed very logical and methodical, like a series of pumps and electrical currents to help circulate blood. Similar to engineering, it was all about solving problems, finding physiological solutions to make a human organ function more optimally. However, her efforts have evolved into something with greater complexity than rational attempts to repair failing pumps, and damaged circuit boards. Nidhi has now adopted a more holistic approach because physical well-being can be inextricably linked with mental and emotional health. Nidhi aims to empower her patients to understand that women can only give of their energies to others for so long before neglect of themselves catches up to them. Today, Nidhi has built her practice on compromise and realistic expectations to lead heart healthy and fulfilling lives.

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LORIFICK CARDIAC NURSE

In the 32 years that Lori has been a nurse, she’s had the privilege of caring for many patients. Each one has their own story to tell and many have touched her heart. Since her own cardiac arrest three years ago, Lori can truly relate to most of her patients and believes it made her a better nurse.

Lori’s role as a nurse is to explain her patients’ heart failure diagnosis and educate them on the symptoms. She also reviews their medications and the importance of taking them as prescribed.

Together, they discuss fluid and sodium restrictions and daily weights. Due to Lori’s own diagnosis of heart failure, she is extremely knowledgeable and can offer suggestions for low-sodium meals and substitutions.

BUIL DING A TRUS TING REL ATIONSHIP WI T H PAT IEN TS...

Lori believes that building a trusting relationship with patients takes time but is very important.

Working three 12-hour shifts in a row allows for consistency in patient care. When Lori sees a patient’s happy expression and what a positive outlook they have, she's overwhelmed with joy knowing she is not only doing her job but making a difference in someone’s life.

Lori’s goal for all her patients is to maintain the highest quality of life possible upon discharge.

Returning to some "normalcy" is challenging.

Watching what they eat and drink every day is difficult for some, but when they realize it will save their life, it becomes a new normal. Lori prays that she doesn’t see her patients again in a hospital setting, because that means she succeeded at her job, not only as a nurse, but as an educator.

Lori often shares her own journey with patients, to give them hope and let them know that normalcy can exist with this devastating diagnosis. Her wish for them is to understand it, accept it, learn to live life to the fullest and never take a day for granted.

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DAUGHTER (HEART)

MARISA CARRODO

LIVE LIFE TO I TS FUL L ES T

In 2009, Marisa was outside helping her father shovel snow when he asked her to finish up. Marisa’s dad asking her to finish shoveling was unusual.

In fact, Marisa thought he may have been playing a prank on her like he usually did.

Marisa anxiously awaited his prank, but five minutes later she went inside to find him on the couch grabbing his chest, sweating, left arm hanging and struggling to take a breath.

Over the course of a few years, Marisa’s dad continued to have several minor heart attacks.

Since his heart attacks, however, he has lost a significant amount of weight and puts in more effort

to stay active and heart healthy by doing things he loves, like hunting, woodworking and walking in the woods.

Now, in her adult life, Marisa understands more of the mental toll this took on her dad. As he fought for his life that day, he thought of things he absolutely could not miss: his daughter’s first day of high school, prom, graduating college and even walking her down the aisle—all things he had to fight that day to be a part of. Since then, he continues to “fight” to make sure he is heart healthy for not only himself, but for his family to continue making new memories together!

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After this experience, father and daughter promised each other that they would live life to its fullest every single day.

As a caregiver, Marisa’s advice is to: Be Educated. Be Willing. Be a Light. On the day of her dad’s first heart attack Marisa was 14 years old, which awakened the “it can’t happen to me” mindset. She watched her best friend—her dad—fight for his life while the priest stood over him, and realized it can happen to anyone, at any age.

SAVE THE DATE

FOR THE GO RED FOR WOMEN DIGITAL EXPERIENCE

WEDNESDAY,

JUNE 23 11 a.m.–12 p.m.

Visit lehighvalleygored.heart.org for information

MOTHER

JESSICA HOFFMAN

WELCOME TO THE 2021 GO RED FOR WOMEN CAMPAIGN!

In February 2011, Jessica was given the devastating news that her unborn son, Ryder, was diagnosed with Tetralogy of Fallot, a complex heart defect. Ryder underwent open heart surgery a few months after birth and awaits a second surgery, which is expected to take place in his teenage years. As Ryder’s mother and caregiver, Jessica provides constant care, advocacy and support through his journey. Throughout his life—including the additional diagnosis of 22q duplication syndrome, a rare chromosomal abnormality—Ryder has had more than 14 specialists. Jessica makes it her priority to balance his special needs while trying to allow him to live this precious life he has been given. It has been a rollercoaster she never wanted to get on but she works hard every day navigating through the twists and turns life has thrown her, all to ensure that Ryder’s needs are met, and he enjoys his life to the fullest.

1 in 3. That’s the number of women that are killed each year from cardiovascular disease. But up to 80% of these cardiac events can be preventable.

I am honored to have been chosen to lead this year’s Lehigh Valley Go Red For Women Campaign as the 2021 Chairwoman.

The Go Red For Women Campaign is about raising awareness and educating our community on cardiovascular and cerebrovascular diseases.

It encourages women to stand together to take charge of our own heart and brain health. Because when we stand together, we can change history and inspire ALL women to be heart and brain healthy— for our mother's, daughters, sisters and friends.

Please join me in empowering women with the knowledge and resources they need to take positive action and make their own health a priority. I kindly ask you to attend the Digital Lehigh Valley Go Red For Women Luncheon on June 23, 2021 from the comfort of your own home. Your generous contributions are critical to continued cardiovascular and cerebrovascular research and increased women’s health education.

Together we can evoke change in our community and across the country by improving access to high-quality health care for women and their distinct needs. As an influential and well-respected individual, I hope you will join me in advocating for the American Heart & Stroke Associations. Thank you for being a part of this life-saving movement that is having a significant impact of so many neighbors, friends and family members.

Lisa Deutsch

Director of Corporate & Community Development First Commonwealth Federal Credit Union

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