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Playing Around at Work

Fiona Kishundyal is the proud leader of the stroke support group at Morton Plant North Bay.

Fiona Kishundyal is the proud leader of the stroke support group at Morton Plant North Bay. The group is open to the community.

Fiona Kishundyal didn’t set out to lead a stroke survivor group at Morton Plant North Bay. A recreational therapist at the hospital, Fiona seemed to be the natural choice, but she was concerned her shyness would prevent her from being an effective leader. She decided if she could provide the education and support these individuals and their families deserved, she could overcome the shyness issue to make a difference in their lives.

As a recreational therapist, Fiona utilizes a wide range of interventions and techniques to improve the physical, cognitive, emotional, social and leisure needs of her patients. Fiona shares her philosophy on playing hard at work:

Why is supporting heart health so important to you?

In my job and with the stroke support group, I know how important taking care of yourself can positively affect your health. I exercise and eat right, which are the keys to a healthier lifestyle.

What has been the most surprising thing you’ve learned about yourself leading a stroke support group?

Before I became the leader of the support group, I didn’t think I could do it because I am pretty shy. By sharing my life and my story, along with providing the support for my stroke survivors and families, I came out of my shell. I didn’t realize what a difference you can make in someone’s life. Leading this group has further given me a purpose in what I do. Putting a smile on my patients’ faces makes my day.

What is the biggest misconception about stroke?

People don’t understand or recognize the signs at an early stage, the FAST (face, arm, speech and time) signals that can truly make a difference in recovery. I want to educate others on these signs and symptoms so we can prevent more serious after-effects.

How do you use your position as a recreational therapist at Morton Plant North Bay to help stroke survivors?

I put more fun into coping with their situation. As a recreational therapist, I work with stroke survivors and caregivers to help them learn to reintegrate in the community. Recreational therapy is playing your way to recovery. Using games to build life skills is a great deal of my job to enhance a patient’s health, functional abilities, independence and quality of life. For example, if they need to gain function in their hands, we do arts and crafts. If they want to work on making a meal, we cook. Making therapy fun can lead to a life of no limitations.

What is your WHY?fiona and family

My family. Knowing anything can happen in life, I am blessed. Also, I want to spread awareness to decrease the after-effects of stroke.

Mia’s Heart Is the Best Valentine

Mia Cervoni is thriving since her heart transplant.

Mia Cervoni is thriving since her heart transplant.

This is Congenital Heart Defect (CHD) Awareness Week. For Priscilla Cervoni, she knows about the #1 birth defect all too well.

Priscilla and her husband Kevin are the parents of three children—Kylie, six years old; Mia, 14 months old; and Gavin, who was stillborn at 29 weeks. Priscilla and Kevin were unaware Gavin suffered from a congenital heart defect beforehand. When they were told the likelihood was only 3% that another child would have the same defect, Priscilla and Kevin felt somewhat confident their next pregnancy would have a positive outcome. Imagine their dismay when again at 29 weeks, they were told their unborn child suffered the same defect, Dilated Cardiomyopathy. Priscilla graciously answered my questions surrounding Mia’s progress.

After you discovered that Mia had CHD just as Gavin, what followed?

For 10 weeks, we had fetal Echocardiograms and I received medication. At 39 weeks, I had a C-Section. Mia spent two weeks in the hospital, then we treated her condition for six weeks with various medications. In December 2013, Mia had heart failure, and in January 2014, Mia was listed for a transplant.

I can’t imagine what was going through your mind. Can you put it into words?

I was completely devastated; I was angry. I kept saying that I could not bury another child. What got me through this was that I had a healthy child at home who I needed to stay positive. Once we got to All Children’s Hospital, we had so much faith in them, and I just knew they were going to do anything they could to save her. From the housekeepers to the doctors, everyone was incredible.

What was the process for the transplant?

The goal was to make sure Mia sustained her functions until we had an organ donor. Our transplant cardiologist, Dr. Asanthe-Korane, kept telling us to hang in there and that it was going to happen. We waited 139 days. We received a call on May 17 with the news that we had an organ donor, and on May 19, Mia had the transplant. Immediately after the transplant, she had two cardiac arrests and was on life support for over three days. She stayed in All Children’s Hospital for two months. Once Mia was released from the hospital, we moved to a hotel for another month so we would be close by. We were so fortunate that we had the support of Children’s Organ Transplant Association to offset some of the living costs.

You finally came home with Mia in late August. How has your daily life been since then?

We had to adjust to being home. Mia has been in the hospital a few times since, but they were relatively short stays. She is growing like a weed and is almost 20 pounds now.

What has been the biggest surprise since Mia has been home?

Big sister Kylie shares a special bond with Mia.

Big sister Kylie shares a special bond with Mia.

It is amazing to watch her development and just having her home. But there has been a hurdle in balancing in that we have Kylie, a healthy six-year-old, and Mia, a 14-month-old who has limitations in where she can go. Especially now with flu season, I can’t take her around any crowds.

What do you want people to know about CHD?

It can happen to anyone. We never thought this could happen to us again. I want people to realize that when you don’t have your children vaccinated, it can severely affect a child with CHD. And I want people to know more about CHD and not turn a blind eye. We need more funding for genetic testing.

What is your WHY?

Gavin is my why, and what we’ve been through with Mia.

Tampa Bay Heart is a blog series sharing the WHY of heart disease and stroke survivors, volunteers, medical professionals, partners and supporters. This week’s focus is on Congenital Heart Defect Awareness.

He May Have a Heart Defect, But This Little Boy Is Just Perfect

Look at Michael go! You'd never know he had open-heart surgery two months ago.

Look at Michael go! You’d never know he had open-heart surgery two months ago.

A common characteristic of a newborn can be heavy breathing. It can also be a sign of a congenital heart defect.

When Michael Lester was born via an emergency C-section and was in NICU, mom Jamie noticed her son’s breathing was very heavy. She just felt something wasn’t right. On the fifth day of being in NICU, a nurse noticed a heart murmur. After an Echocardiogram, it was discovered that Michael had a relatively large hole in his heart.

Fast forward to one year, and Michael was getting along splendidly, acting like a typical, rambunctious boy. At his one-year doctor appointment, the hole had yet to close, so on December 4, 2014, Michael underwent open-heart surgery.

Jamie opened up about life with a child with a congenital heart defect.

What happened during that first year of Michael’s life?

After we discovered the hole in his heart, it was wait-and-see. In many cases, as a child grows, the hole closes up. When Michael was six months, the doctors felt it was closing, and he seemed to be doing better. He was even taken off Lasix, a diuretic he had been on since birth due to his breathing problems. By the time he was a year old, you would have never known he had a heart problem. Then, it was determined that the hole had indeed not closed and was affecting his growth.

I’ve spoken to several families about their positive experience at All Children’s Hospital. How would you describe Michael’s stay there?

I was never aware such an amazing hospital was in our own backyard. Their equipment and capabilities are top-notch. The staff truly wants to help, to the point where Michael had his own nurse for the first couple of days. You are treated as if you’re the only patient there. Every morning, a team of doctors and nurses came to check on his progress.

What a beautiful family the Lesters make!

Mom Jamie, Dad Michael and Son Michael make a beautiful family.

What message do you wish to convey to other parents going through a similar situation?

I had no idea how common congenital heart defects were and how often they go unnoticed. If you have an instinct that something isn’t quite right, be persistent and ask questions. The only way I got through this was trying to stay positive, knowing how strong my little boy was and having an amazing team of doctors.

How are things today for 16-month-old Michael?

Things are basically back to normal. We do not have to see the cardiologist for six months. No one would know Michael had open-heart surgery unless they saw the scar on his chest. He’s even learning sign language!

What is your WHY?

Michael and my family are my why. I want to spread awareness and increase discussion of congenital heart defects. This is the most common birth defect, and there must be more research.

Tampa Bay Heart is a blog series sharing the WHY of heart attack and stroke survivors, volunteers, medical professionals, partners and supporters. This week’s focus is on Congenital Heart Defect Awareness.

This Little Spitfire Will Warm Your Heart

Aemelia Bills is a spitfire, according to mom Leather.

Aemelia Bills is a spitfire, according to mom Leather.

Aemelia Bills appears to be a healthy, 18-month-old girl who has what her mom Leather refers to as “spitfire tendencies.” You’d never know that when Aemelia was just five days old, her parents Leather and Gary didn’t know what the future held. At Aemelia’s first check-up, her pediatrician noticed her deep breathing, and instead of just chalking it up to what can be a normal characteristic of newborns, she ordered an Echocardiogram. Afterward, Leather remembers the exact time of 8:21 p.m. when the call came instructing her to be at All Children’s Hospital the following morning.

What transpired over those next few weeks is something no parent or child should have to go through. Leather graciously agreed to talk with me about Aemelia and Congenital Heart Defect (CHD) Awareness Week.

Tell me about learning of Aemelia’s cardiac malformation.

Aemelia was born with an isolated ventricular inversion, with blood entering her heart through the wrong chambers. Her bottom ventricles were flipped. She had two holes in her heart, and she had a double outlet of her right ventricle. My husband and I were told that Aemelia may not survive. I walked out of the hospital thinking, I am going to lose my daughter. The next day, our cardiologist, Dr. Freire, called and said, ‘We have a plan.’ We were introduced to a cardiac surgeon, Dr. Quintessenza. He told me he was going to fix my daughter. And he did.

So Aemelia underwent two surgeries in one week?

We had to wait a while for Aemelia to get bigger. We went every week, and then one Thursday we went in and she had the Senning procedure. The same week, she had Pulmonary Artery Banding. Because of the extent of what was needed, open-heart surgery was required. Aemelia had these two surgeries in one week. Then at 13 months, Aemelia had another Pulmonary Arterial surgery. Right now, we’re discussing the option of installing a pacemaker into her, but it would have to be placed in her abdomen, because her chest wall isn’t big enough at her age.

What is life like on a daily basis?

Aemelia gets winded easily. I have watched her fall and stop breathing. I live with the fear of what if someone hits her hard? Is her heart going to literally tear? I have fears that I never in my wildest dreams ever thought I would. I need to get to the place where I let her be a normal 18-month-old and to just be a kid, but it’s hard.

Is Aemelia in a play group or class?

She comes to my son’s school with me a couple of times a week to play with the Pre-K class. I don’t send her to daycare because they do not carry the paddles needed if she goes into cardiac arrest.

Aemelia is a blessing to dad Gary, mom Leather and big brother Gary Tre.

Aemelia is a blessing to dad Gary, mom Leather and big brother Gary Tre.

I’ve been told you’re very outspoken about CHD awareness. What does that mean to you?

I owe my child’s life to my pediatrician for being so knowledgeable and going beyond the expected. She could have just thought it was a heart murmur and not done anything further. I owe All Children’s Hospital for saving my baby. If it weren’t for them, I don’t know where we would be. When you walk in, they know your name. You are not just another patient. They are my family.

Eighty-five percent of all birth defects are heart-related. It is the #1 birth defect that kills babies. There needs to be mandatory Pulse-Ox testing (to monitor the oxygen flowing to the blood) performed from the time a baby is born until he/she goes home.

What is your WHY?

My daughter and all the babies who have passed away. If I was doing this just for my daughter, that would be selfish. One day I will help make it mandatory in Florida for the Pulse-Ox testing. If I can help someone catch this to be prepared, that is my why.

Tampa Bay Heart is a blog series sharing the WHY of heart attack and stroke survivors, volunteers, medical professionals, partners and supporters. This week’s focus is on Congenital Heart Defect Awareness.

Striking Back at Heart Disease

Josh and Stephanie Andre make for an adorable son-and-mom team.

Josh and Stephanie Andre make for an adorable son-and-mom team.

Stephanie Andre was 16 weeks pregnant and on a business trip in San Diego when she got the news. Her triple-screen blood test showed elevated results, which indicated a possible birth defect. What made matters worse was that she had to wait until she was 18 weeks along for an ultrasound to show further findings. After several tests to determine what was the potential heart defect, Stephanie and her husband Chad were told it was a matter of wait-and-see until delivery.

At just over 38 weeks, Stephanie developed pre-eclampsia and went into labor a few days later. When Josh was born, he was immediately given medication so he could breathe properly after birth. The Andres finally were able to hold their son for the first time five days later.

Stephanie and Josh took turns telling me about what life is like now, 10 years later.

An avid baseball player, Josh combined his love for the sport with his desire to help others with heart disease.

An avid baseball player, Josh combined his love for the sport with his desire to help others with heart disease.

Stephanie, tell me about discovering Josh’s congenital heart defect.

We had no idea what the defect was going to be. Not knowing what was wrong was very frustrating and it could have been several things–holes in the heart, a condition where only half the heart works, the need for a heart transplant. We were living in Washington, D.C., so when we were told to go to All Children’s Hospital in Philadelphia at 32 weeks, we knew it very serious.

Twelve hours after Josh was born, he had open heart surgery, where the doctors performed a regular bypass as well as frozen bypass for 45 minutes to fix a number of problems, including holes in the heart and issues related to his aorta. They essentially had to take his heart apart and put it back together. Since then, he’s had two more surgeries, one at eight months and one at four years old. He has an artificial conduit, made of bovine tissue, that must be replaced to adapt to his growth and age. He’s due for another one in the next 12 to 18 months.

Stephanie, how did Strike Out CHD come about?

Josh starting participating in the Jump Rope for Heart at his school in first grade. Before that, we didn’t really have any involvement with the American Heart Association. In that first year, Josh raised $300, more than anyone else in his school, and he’s been doing it every year since, raising somewhere between $1,000 and $1,700. But Josh wanted to do something more. He has been playing baseball since he was four years old, so that was really his inspiration. Josh came up with the name “Strike Out CHD.” The website is strikeoutchd.org. We will soon be registering it as a nonprofit. Josh has spoken at his school about the organization and raising money, and he’s been a Survivor Honoree at The AHA-Tampa Bay Heart Ball.

Josh, what is your ultimate goal with Strike Out CHD?

I want to raise money for research to help other kids like me. I also want kids to have more hope. If I can survive, they can too.

Stephanie, how did you come to chair the community teams for the Heart Walk?

I had already been involved a bit with the AHA and had mentioned that I wished there was a “home” for community teams at Heart Walk; they already had a central location for corporate teams. Also, there really wasn’t a method for community teams to effectively participate. There wasn’t a contact person for the teams, and I spoke up to give feedback about that. From there, I was asked to spearhead the community teams committee, which I am doing again for 2015.

Josh, what do you think about your mom chairing this committee?

It’s really nice. The more my mom spreads the word, the more money can be raised and maybe someday they’ll find a cure, so more kids will survive and not have to go through what I’ve gone through. I think it’s really cool.

Stephanie, how does the family spend the weekends?

We’re at the baseball field quite a bit. Josh doesn’t let anything hold him back. He’s a great ballplayer. Josh’s day-to-day life is like any kid’s. You’d never know he has the history he has.

Josh, what are your favorite things to do?

I have three things. 1. I love to play baseball. 2. I like playing video games. 3. I like hanging out with my friends.

Chad, Josh, Stephanie and Emma Andre at the AHA Heart Walk.

Chad, Josh, Stephanie and Emma Andre at the AHA Heart Walk.

 Stephanie, what is your WHY?

Josh is my why. He’s the reason for everything.

 

Tampa Bay Heart is a blog series sharing the WHY of heart attack and stroke survivors, volunteers, medical professionals, partners and supporters.

 

 

 

Holding the Sugar Is the Sweetest Reward

Ann Shuck proudly displays her Top Walker recognition at the 2014 American Heart Association Heart Walk.

Ann Shuck proudly displays her Top Walker recognition at the 2014 American Heart Association Heart Walk.

Ann Shuck lived on sodas and other sugary drinks, and she kept a salt shaker in her office desk at Raymond James. A self-proclaimed “couch potato,” Ann thought cancer would be the health concern she would face one day due to her family’s history.

On April 7, 2014, Ann discovered stroke became her greatest concern. She wanted to share her story, as in her words, “If I can change one person’s life by admitting what I did wrong, then it is worth it.”

Tell me about your life prior to your stroke.

I probably drank 60 ounces of soda a day. I had high blood pressure for 25 years, but I thought since I took my medicine, it was well-controlled. I loved salt and led a sedentary life. My only exercise was chasing the grandkids. My husband Jerry continually tried to get me to eat healthier and exercise, but I didn’t listen.

Now tell me about the day your life changed.

I was on the phone and I couldn’t focus on what was being said. I attempted to walk to the restroom, but I walked into a wall, as my left leg didn’t go around it. My manager was standing right by my desk, which in itself was very unusual.  My manager told me I was going to her office, and she didn’t back down when I replied that I just needed to rest a bit. She called 911. They did the FAST test (face, arm, speech and time), and the symptoms were all there. I always had the fear of being rolled out on a stretcher somewhere, but this time humiliation was the furthest thing from my mind.

I have to tell you that despite the circumstance as to why I was there, St. Anthony’s Hospital was a wonderful experience. Someone was with me at all times. When I came in, my entire left side was not working. I admit I was scared. No one in my family had suffered a stroke. But the doctor came in and said, “You are going to be fine. The medicine is going to dissolve the clot.” It took 18 hours, but then I was able to move again.

When you are asked about your stroke, what do you say?

I tell people I am a walking miracle. I do not have any residual side effects. Thank God I was at work and that my manager just happened to be by my desk and refused to listen to me. That day, all things happened for a reason.

Since your stroke, what has changed?

I am concerned that it could happen again, but I’m doing all that I can so that it doesn’t. I haven’t had a soda since April 7, and now I drink only water with lemon. I have lost 34 pounds, and I walk two-three miles every day. And I threw away the salt shaker.

What message do you want others to learn? 

Take charge of your life. Don’t be like me. It truly can happen to anyone. I thought the only people who suffered strokes were in poor health, such as obese or elderly people. I had to learn the hard way. I guess Someone up there told me I needed a life lesson.

If you could have one “do-over,” what would it be and why?

I would have changed my lifestyle much sooner. I would have listened to my husband when he tried to get me to eat healthier and exercise!

Two Raymond James coworkers show their "backing" of Ann.

Two Raymond James coworkers show their “backing” of Ann.

How do you spread the word about heart disease?

The CEO of Raymond James, Paul Reilly, was the American Heart Association Heart Walk Chair this year. My team walked together in support of me and wore shirts with my name. I have spoken at several events, including the Raymond James Lunch-and-Learn on stroke awareness.

What are your favorite relaxation places in the Tampa Bay area?

I love to visit with my grandchildren at their school. I walk at Walsingham Park in Largo, which has a six-mile path.

Who do you want to meet to tell your story?

I’ve already met him, but I’d love to talk again with Steve, my ICU nurse. When Steve gave me a ton of literature about stroke, my daughter said I needed to start exercising soon. Steve replied, “Not soon. She is going to start walking today.”

What is your WHY?

My family and my friends. When I was lying there, unable to move, I knew I had messed up. My husband and I were going to travel. I wanted to do so many things with my two children and four grandchildren. My manager, the one who took the first steps, took charge of her life by losing 60 pounds and taking up kickboxing. All of this is my why.

Tampa Bay Heart is a blog series sharing the WHY of heart attack and stroke survivors, volunteers, medical professionals, partners and supporters.

She’s No Longer on the Sidelines

Annemarie's new lease on life includes the peaceful, energetic activity of longboarding.

Annemarie’s future is a peaceful, wide open road ahead, thanks to her life-saving heart transplant.

Annemarie Ward has a new lease on life, literally. Years ago, she was a teenager “sitting on the sidelines” at her sister’s games, wanting to join in the fun. Having been diagnosed with heart disease at age seven, Annemarie received that new lease on life at age 18 with a heart transplant. Now, the 21-year-old is able to enjoy a variety of activities, including her newfound passion of longboarding.

Tell me about your diagnosis of heart disease at age seven?

I was walking my dog with my mom one morning before school, and I collapsed. The doctor told my mom I could have died due to the trauma of the fall. I was diagnosed with hypertrophic cardiomyopathy, and I was implanted with a defibrillator and a pacemaker. The defibrillator was to control my heart from beating too fast; the pacemaker when it was too slow.

I was not allowed to play sports, so I missed out on a lot of normal childhood activities. My sister played volleyball and soccer, and I wanted to do the same. Because of my heart condition, I was constantly told no.

Then you received a heart transplant at age 18?

Yes, the muscle around my heart was getting thicker and thicker, so I was put on a list at age 17 to receive a transplant. The doctors said I was getting to a dangerous state, so I received the transplant at 18.

How do you live your life today since the transplant?

Annemarie (on the left) loves to longboard with her college roommate Cassandra.

I exercise, and I want to do more than I do now. This may sound funny, but I need to learn how to exercise correctly and not overexert myself. I’m still building my endurance, and I really enjoy longboarding. I am pursuing a degree in social work at Southeastern University. My goal is to work in a hospital to help educate others and just be there to listen, letting them know they’re not alone.

I try not to dwell on what I call my missed childhood. I have a strong faith, and I know that He will provide for what I need. He has a plan for me, and He knows the outcome.

What message do you want others to learn?

Disease does not define who you are. Just keep fighting. If you give up, what’s the point? You have to be a genuine believer in hope.

How are you involved with the American Heart Association?

I advocate for AHA through events like the Heart Walk. I was also a representative at this year’s Heart Ball.

What impact do you have with fellow students at Southeastern University?

I tell people my story. I’m in no position to tell people how to live their life, but I try to lead by example.

What trait do you most admire about yourself? 

I can make people laugh, and I bring them joy. I’m a loyal friend who is there for others.

How do you live a healthy life?

I’m learning constantly about ways to eat healthier and know what my heart deserves. It has been an interesting process to discover side effects from medicines, so I continue to learn to adapt.

What is your WHY?

I want there to be a cure for heart disease. I want people to experience this amazing life and world.  

Tampa Bay Heart is a blog series sharing the WHY of heart attack and stroke survivors, volunteers, medical professionals, partners and supporters.