Harboring Hearts in Action: Jamilya and Ah-Niyla’s Story

For our clients, home is where the heart is, and they will do their best to stay with their loved ones–even if that means sleeping in the waiting room. Jamilya Lowery, whose daughter, Ah-Niyla, was diagnosed with myocarditis, made the decision to stay with her daughter at the cost of a good night’s sleep. Instead of renting an expensive hotel room to save money Jamilya was prepared to sleep anywhere from Ah-Niyla’s little bed to waiting room chairs.

That’s where Harboring Hearts steps in with the resources necessary to offer families a place to stay and ease the financial and emotional burdens on heart patients and their families during critical times.

Today we would like to thank NorthJersey.com for their special feature on Harboring Hearts and Jamilya Lowery and Ah-Niyla Williams. We appreciate your continued support, and for covering this story that so poignantly illustrates our mission.

For all the details on Jamilya and Ah-Niyla’s story click the link below!

Helping Patients to Adopt a Healthy Diet Can Be a Family Affair

This month we are happy to feature a post from guest blogger and nutrition expert Lisa Harper. Lisa is a freelance writer, creating content to educate and inform her readers about the importance of a healthy diet and lifestyle. She is a mother of two and when not experimenting with new recipes in the kitchen, enjoys taking walks with her family and dogs.

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Happy family having roast chicken dinner at tableOne of the toughest things that many heart disease patients face is the upheaval in their diet that comes as a result of some critical thinking and honest appraisal of exactly how good their current diet is. Food is something that can unite or divide us, and when faced with making drastic changes to diet having the guidance and support of family can really have a positive effect.

Standard American Diet Causing Health Problems

A recent study by the American Heart Association found that as many as 79% of American adults are meeting 0 or just 1 of the recommended healthy diet metrics. That means that only 21% of American adults are getting 2 or more out of 5 which is a shocking statistic. This is something that needs urgent attention as our health is suffering due to it. The study also showed that 13.2% of deaths due to cardiovascular disease were attributed to poor diet, highlighting the importance of healthy eating for us all. We owe it to ourselves to make changes to our lifestyles that will improve our health condition, and diet is an important place to start.

Making Connections for a Healthy Future

Diet is something that is a central part of our daily lives and our cultural heritage and many people grow up eating certain meals which they love and cherish. This is why is makes it extremely difficult for us to alter our diets and to kick out those unhealthy foods to the curb. Let’s face it; nobody wants to sit down with a plate of salad in front of them whilst everybody else around the table has their traditional favorite family meal. The same goes for eating out or at social events such as barbecues and social gatherings, which is why discovering that you have a cardiovascular disease and that you need to change the diet you have grown up with can be such a difficult challenge to face.

 

One of the most positive things that you can do to support a loved one with a cardiovascular disease is for everyone in the house to alter their diets in line with ‘what the doctor orders’ so that instead of it being a difficult life change that they have to go through alone, they are going through it with everyone else. When the entire household embraces the new healthy eating diet, it can create a truly positive and supportive environment, making the experience much easier on the person with the health problems. Instead of sitting there watching everyone else eating the same old meals, they are now going to be exploring new cuisines alongside their family.

Everyone Benefits

Diet is one of the foundations of a healthy body, and when a health scare comes into a family it should act as a warning for everyone to change their habits in order to avoid similar problems. By grouping together and supporting each other with something as important as a full dietary overhaul, you are helping to ensure the long term health and vibrancy of the entire family as well as providing valuable moral support for each other. This could also help to save money in the long term as it will reduce the amount of medical bills and the costs of health coverage.

More Than an Office Visit: Why Patient-Doctor Relationships Matter

For many people, a patient/doctor relationship involves an annual check-up and maybe some occasional visits when cold and flu season arrives. With the carefree days of summer around the corner, a visit to the doctor may be the last thing on our minds. But when we face more significant health challenges, it can mean more regular, intensive monitoring with specialists both in and outside of the hospital. The relationship each patient and his or her caregiver form with the healthcare team is unique and special. The nature of that relationship can also have a significant impact on the healing process. As a heart attack survivor, heart transplant recipient, leg amputee, and two-time cancer survivor, I’ve seen my share of medical specialists over the past 14 years. Here are some of the tips I’ve learned along the way.
  • Don’t be afraid to visit the doctor. We know our bodies better than anyone else, and can often tell when something feels off. Sometimes we minimize pain and may be hesitant to go to a doctor on the chance that nothing is wrong. In extreme cases, a visit to the doctor could make the difference between life or death in discovering an underlying problem.
  • Be honest with your doctor. Aside from sharing unusual symptoms, there may be hesitancy in sharing certain details about your medical history or personal life that may be relevant to the medical situation you’re coping with. Medical teams are there to help you, not judge you. Withholding information can put you in danger, and your health is not worth that risk.
  • Be prepared. A visit to the doctor can feel overwhelming, especially when there’s worry involved. Write down a list of questions ahead of time so that you don’t forget anything. It’s also good to bring someone in the room with you whom you trust. He/she can ask additional questions you might not have thought of and help you remember the information if there’s a lot to process.
  • Talk to your doctor about your goals. Your life may feel like it’s suddenly being put on hold when you’re faced with a health challenge. Talk to your doctor and/or social worker about any concerns you have with regard to work, school, family, etc. Doctors know that you’re a person, not just a patient. Tell them about upcoming events that are important to you, and talk to them about treatment scheduling to see if any adjustments are possible. Short-term and long-term goals are great ways to stay motivated and remind you of the life you’re working towards returning to full time.
  • Don’t be afraid to get a second opinion. Doctors recognize that the health landscape can be new and difficult territory to navigate and understand. If you still have questions or want a means of comparison, it may be helpful to get a second opinion from another doctor. Your health is at stake, so it’s important that you feel comfortable and trust your instincts.

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The author and family with her heart transplant surgeon, Dr. Furukawa

The author and family with her heart transplant surgeon, Dr. Furukawa

 

 

 

Recap: Harboring Hearts’ 3rd Annual Arts & Crafts Community Event

Harboring Hearts teamed up with Save a Child’s Heart Young Leadership Group and Claudia Chan’s S.H.E. Summit Week to host our annual arts & crafts event at NewYork-Presbyterian Morgan Stanley Children’s Hospital on June 12th.

 

HH and SACH YGL Volunteers!

HH and SACH YGL Volunteers!

 

Around fifteen volunteers joined us in fun-filled interaction with young heart patients and their families.  Everyone enjoyed an exciting afternoon filled with crafts, bead-making, face painting, laughter, yummy treats, and even a surprise visit from Cinderella!  With all of the great feedback from hospital guests, staff, and volunteers, we would like to make this event an ongoing tradition. We can’t wait to do it all again soon!

 

Cinderella bringing joy and fun to those who were unable to leave their rooms

Cinderella bringing joy and fun to those who were unable to leave their rooms

 

Check out our Facebook page for more pictures from the event!

If you’re interested in learning more about how you can volunteer at our next community event or in other capacities let us know by filling out our form below.

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Aveeno Grant Winners!

This past year, the AVEENO® Brand launched the Be An Active Natural™ Fund to award more than $300,000 in grants to individuals and organizations that create positive change in their communities.

Co-founder, Yuki Kotani, was nominated to receive one of eight Aveeno “Be An Active Natural” $10,000 grants and won on behalf of Harboring Hearts. This is an amazing accomplishment! We are thrilled to be recognized by Aveeno, a community that shares our efforts to celebrate natural and inner beauty as well as promote an active, healthy lifestyle. Harboring Hearts is using the generous Aveeno grant to kick-off our emergency fund, which is helping heart patients and their families meet various forms of transportation and other needs.

 

Work It Out

Exercise. Love it or loathe it, it’s one of the number one ways of keeping our hearts healthy.  At age 16, I suffered a massive heart attack from a blood clot, but the fact that I was co-captain of my school tennis team and in good physical shape is one of the reasons I was able to survive such a major event. While I waited 9 months for my heart transplant, doctors emphasized how much exercise would help for a successful operation. Now that I’ve had my heart almost 14 years, I realize how fortunate I am to have received it, and I try to stay active to ensure it keeps ticking.
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  • The American Heart Association recommends 150 minutes per week of moderate exercise (30 minutes, 5 days a week), or 75 minutes of rigorous exercise (25 minutes, 3 days per week).
But let’s face it: it’s not always easy. For those of us who are “allergic” to the monotony of treadmills, many gyms offer classes ranging from disco spin cycling to hip hop and break-dancing. But gyms can also be expensive, and sometimes it’s hard to carve out time in our otherwise busy lives. Despite these barriers, there are fun, creative ways to help exercise seem less like a chore.
  • Break it down: 150 minutes a week sounds pretty daunting. Even 30 minutes seems like a lot of time to spare most of the week. But breaking that time into shorter intervals: 15 minutes in the morning, 15 in the evening, makes it more digestible.
  • Make it less deliberate: I find that exercise feels less like an obligation and more “unintentional” when I build it into my everyday routine. Since I live in NYC, this might mean getting off the subway a few stops earlier on my morning commute, but it could also mean taking the stairs instead of the elevator in your office building or parking further away. Every little bit counts.
  • Make it an excuse to socialize: I’ve always enjoyed taking long walks. Not only is it a great way to take in fresh air and scenery, it gives me span of time to catch up with family or friends. Back in the days when I was still rebuilding my strength, my parents would bring along a wheelchair in case I needed to rest midway. Now when my parents visit, we always make time to wander through the park, stroll by the waterfront, or meander through a new neighborhood. Having set plans with an exercise buddy also makes both of you accountable to each other in achieving your goals.
  • Make it rewarding: Whether it’s swimming at your local pool, organizing a dance party, or co-opting your kids’ video game system for Wii fitness or Dance Dance Revolution, there’s no reason “exercise” has to be traditional. Running or walking in support of charities like Harboring Hearts can also motivate you when every extra mile means helping others.
No matter how you choose to stay active, it’s important to always consult with your doctor if you’ve been dealing with health challenges. But with a little creativity, you may find yourself enjoying exercise in spite of yourself. Your heart will thank you for it.
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Twitter: @jessicamelore

Healthy Hearts: Self-care vs. Stress

We are so happy to feature a post from guest blogger and health pro Tara Magalski! Check out more amazing and healthy information on her website at Divinelifestyles.com.

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How do you manage your stress? Do you drink your woes away? Do you smoke to take off the edge?   Do you stay up all night tossing and turning? Do you take pills to calm your nerves? Do you find yourself over-eating to stuff down those feelings of worry? Do you find yourself spinning out of control?

Chronic stress exposes our bodies to elevated levels of adrenaline and cortisol, which can disrupt many of our body’s processes.  Unmanaged stress can lead to digestion problems, skin problems, disrupted sleep patterns, depression, psychological and emotional problems, over-eating and heart disease risk factors such as high blood pressure and high cholesterol.

The most important thing you can do for your health is to find ways to de-stress.  After living in NYC for eleven years, the hustle is in my blood.  We are prone to external stressors living in busy cities, so it is extremely important to find ways to cope. What I have found to be the most valuable tactic is “self-care”.

What is self-care? Self- care is all those things you do for pure pleasure.

 Divine Lifestyle’s “self-care” tips:

1.)  Well balanced meals:

  • Low in red meat and processed foods, high in fruit and veggie consumption. Fish and whole grains will keep your blood sugar stable through out the day. A well-balanced meal prevents diabetes and keeps your heart healthy and happy.

2.)  Exercise outdoors:

  • Spending time in nature and breathing fresh air is the healthiest way to work out. The American Heart Association recommends exercising aerobically at least thirty minutes all or most days of the week.

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3.)  Pray/Meditate:

  • Connect with your “spirit self” to remain balanced, relaxed and grounded.

peaceful

4.)  Maintain a positive attitude:

  •  Positive thoughts are proven to make you feel at “ease”; negative thoughts are proven to make you feel “dis-ease” which can lead to many health problems. “The greatest discovery of my generation is that human beings, by changing the inner attitudes of their minds, can change the outer aspects of their lives.”

– William James (1842-1910)

5.)  Pamper yourself:

  • Get a manicure/pedicure and make sure to get an extra ten-minute foot massage; or a facial and back massage…or even better, a spa day!

6.)  Cut out caffeine:

  • Caffeine elevates stress hormones that cause inflammation. Inflammation is one of leading culprits of heart disease.

7.)  Soak in the bath:

  • After a long day at the office, taking the time to wind down reduces stress hormones and will boost your immunity.

8.)  Cook your favorite meal:

  • Cooking for yourself helps you to become mindful of how you are nourishing your body.

9.)  Get 6-8 hours of sleep:

  • Not getting enough sleep can lead to hypertension and heart disease.

10.) Find quiet time to read your favorite book:    

  • Expanding your imagination is a great tool for reducing stress. The power of your imagination (through visualization) can produce calming, healing responses in your body.

11.) Book that vacation you always dreamed of…and don’t feel guilty: 

  • Taking “time-out” from your daily routine and doing something adventurous is good for your soul. It’s healthy to take a break from the grind.

12.) Spend quality time with loved ones: 

  • Love is all we need.  Spending time with loved ones lowers blood pressure.

13.) Find a fun dance class to set yourself free: 

  • Dancing is a great way to let loose and burn calories; and a great cardiovascular workout.

dancing

14.) NO SMOKEY:

  • Smoking is a major cause of coronary artery disease in men and women.

You can visit my website at www.divinelifestyles.com and my facebook page at https://www.facebook.com/divinelifetara?ref=tn_tnmn

@divinelifetara

“Health brings freedom very few realize, until they no longer have it. Without your health, you have nothing.”

-Tara Magalski

From My Heart to Yours: An Introduction

When you envision your senior year of high school, heart disease doesn’t exactly come to mind. It isn’t supposed to happen when you’re 16, co-captain of your tennis team, and have never spent a night in the hospital. It shouldn’t happen when you don’t drink, smoke, do drugs, or have high cholesterol.  But even without the typical risk factors, heart disease knows no rules, and it happened to me when I least expected it.

While out at dinner with my parents, the world suddenly started spinning and I thought I would pass out. There were pressure pains in my chest and neck and it felt like my arms were made of lead. When the dizziness subsided, I assumed it was an allergic reaction to the food, a minor passing episode. Until an ambulance took me to a local hospital and a cardiologist said the dreaded words:

“Massive heart attack.”

A blood clot had lodged in the artery leading to the left side of my heart was completely blocking blood flow. I had a 20-30% chance of dying right then. At a second hospital, I was crashing. My lungs were filling up with fluid, and the Last Rites were said for me because I wasn’t expected to live through the night.

Doctors managed to stabilize me in time to take me to a third hospital in hopes of having a heart transplant as a last resort. With a critical shortage of organs and tens of thousands of people waiting, no hearts could save me. They implanted a then-experimental Left Ventricular Assist Device (LVAD) to pump the left side of my heart via battery power while I waited in hope for a transplant. Additional complications forced doctors to amputate my left leg in order to save my life.

Jessica Hospital Post Transplant

It was time to reclaim my life and face a new reality. After six weeks in the hospital, I returned to school and kept myself as busy as possible with classes, friends, and school activities. Nine months later, just days before my graduation ceremony, I received my second chance at life: a heart from an 18 year old named Shannon. Three months later, I was able to start Princeton University on time, and I went on to work in the organ donation field to help the many others still in need of a life-saving organ.

When Michelle and Yuki were co-founding Harboring Hearts, I became an original founding member and now serve on the Board of Directors. Harboring Hearts’ mission resonated deeply with me, thinking back to the many sleepless nights my parents spent by my side. They didn’t miss one night, often sleeping in my hospital room, and their support made such a huge difference in my recovery.  There are so many other families in need of the emotional and financial assistance that Harboring Hearts provides. I’m honored to share my story in an ongoing blog series to help give voice to the patient experience and address different topics that we often face. I look forward to getting to know you in the coming months!

Lopez Family NYP

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SPOTLIGHT ON: MIKELLE KENNEDY

What is your current role at Harboring Hearts?

I handle all the office administration, manage our social media platforms and website development, and I am also in charge of HR.  Needless to say, I wear many hats here at Harboring Hearts, but that is one of the reasons why I love working here!
  • Favorite food:  steak and au gratin potatoes
  • Favorite travel destination: Maldives
  • Favorite book: Harry Potter Series
  • Favorite music: instrumental movie soundtracks
  • Favorite movie: Pride and Prejudice
  • Favorite way to relax: shopping, a hot bath and watching a movie…in that order

Recap of Recent Community Events, & How You Can Get Involved!

Harboring Hearts was able to help make February a little sweeter for over 450 pediatric patients and their families at two New York City hospitals through our Community Events initiative. These events create a warm, welcoming atmosphere, solidarity, and network of support for pediatric cardiac patients and their families.

On February 14th, Harboring Hearts participated in a community event at Montefiore Medical Center. The Grand Hall of the Bronx facility was home to shiny red heart balloons, Valentine’s cards, toys and board games, an information booth about Harboring Hearts, and more. Fun music played as children danced, had their faces painted, and ate a warm meal sponsored by Harboring Hearts. Many doctors, former patients, social workers, and caregivers attended as well.

 

Pediatric heart patients and families gathering together at Montefiore.

 

Parachute Fun!

 

Shayla Frandsen, Gacia Tachejian, and Michelle Javian at Montefiore Community Event

 

On February 19th, Harboring Hearts was at Mount Sinai Hospital participating in our second community event of the month. It was called a community event, but it was more like a party! Pediatric cardiothoracic surgery and interventional patients and their families enjoyed a variety of activities, booths, decorations, games, and music. Harboring Hearts donated and served delicious food to attendees, and we were even able to meet up with former beloved patients and friends!

 

Michelle Javian with a cute heart patient.

 

Gacia Techejian, Shayla Frandsen, and Michelle Javian at Montefiore.

 

Co-founders Michelle Javian and Yuki Kotani reunite with a family Harboring Hearts has recently helped.

 

Shayla Frandsen & Mikelle Kennedy at Mount Sinai Hospital community event.

 

Ira Parness, MD, and Chief of Division of Pediatric Cardiology said of the Mount Sinai event, “We had a huge and HAPPY crowd of children and families today . . . It was heartwarming that so many patients took out time from their busy lives to attend this party. There was a sense of joy and gratitude as the patients and their parents embraced their caregivers at Sinai.”

Many thanks to all of you for joining with us to help give back and make a difference in the lives of these families! We would not be able to participate in events like these without your continued contributions and support. If you’re interested in learning more about how you can volunteer at our next community event, please email us at info@harboringhearts.org.

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