More than three hundred people, including patients from across central Florida and as far away as Georgia, came out to walk in support of people living with congenital heart disease or defects. According to Brigitte Tibben with Team FMC, a program of the Florida Medical Clinic Foundation of Caring, the walk raised MORE THAN $35,000 to fund research as well as programs that will help raise awareness and provide much-needed services for patients and their families.
“This is the fifth year we have hosted the walk, and we are so grateful to see it getting bigger and bigger every year,” Tibben said. “A lot of people are not aware of this condition, and we want to help people better understand both the condition and the people who live with it.”
COMPASSION & UNDERSTANDING
Dr. Hector Fontanet, MD FACC, a cardiologist and congenital heart disease specialist with Florida Medical Clinic in Land O’ Lakes, explained that, though there is currently no permanent “fix” for this condition, patients born with malformed hearts can still live rich, full lives. “When a person is born with a congenital heart issue, we know that, in many cases, medical treatment can repair certain defects, temporarily restore normalcy and make huge improvements in a patient’s longevity and quality of life.”
Dr. Fontanet said treatment for congenital heart defects could not be classified as a cure, but, instead, as a repair. “Many of these individuals have had procedures that allow them to live a perfectly normal life. They can absolutely function at the highest level and be productive members of society. We know firefighters, EMTs, doctors, engineers, teachers, nurses, people in just about every profession, who are living well with congenital heart defects.”
“People need to know this, to meet these people and help break down these biases,” Dr. Fontanet added. “Will there be life interruptions? Absences from work? Sure, but employers who understand the nature of this condition will respond with compassion, allowing people to deal with the infrequent medical procedures related to this condition.”
That’s not to say congenital heart defect patients are looking for special treatment. They want compassion, not pity.
CLOSING THE GAPS
Dr. Fontanet said one of the most difficult challenges faced by congenital heart patients is what happens when they reach adulthood. “These patients are left in limbo. They cannot get benefits because they have not worked, and they have also dealt with being uninsurable. The Adult Congenital Heart Association (ACHA) is a spoke organization for individuals who have to confront all the issues that come with their medical condition.”
Dr. Fontanet is one of a small team of specialists, including member physicians from Florida Medical Clinic and Pediatric Cardiology Associates, working to build community awareness and to provide services, in some cases extensive pro bono work, in order to help patients living with CHD.
“The Florida Medical Clinic Foundation of Caring has been extraordinarily helpful in getting people to come out to our events. I cannot tell you how appreciative our organization is of that work and the Foundation’s commitment to be a leading voice for these patients in our community,” Dr. Fontanet said.
DECIDING TO LIVE
LeeAnne Zarowski is an intensive care nurse at Tampa General Hospital. She was born with a congenital heart defect, and has learned to embrace all that life offers, despite her condition. Yes, she must live with the condition every day of her life, but for LeeAnne, the key word is to LIVE!
LeeAnne has endured multiple open heart surgeries with good humor and determination. “When you are diagnosed with a congenital heart defect, you learn that there is nothing, currently, that can be done to correct that condition. But there is nothing in that diagnosis that says you can’t live life to the fullest. So many people allow this condition to hinder them. They become ‘cardiac crippled,’ staying inside and artificially limiting themselves.”
“Go out and play, be a kid and do what you can do. Live life to the fullest.”
LeeAnne said her parents taught her not to let her condition define her. “My parents told me, ‘go out and play, be a kid and do what you can do. Live life to the fullest.’ I’m thankful for that.”
Today, LeeAnne is involved in the ACHA as an ambassador, representing the organization at events, going to heart walks and hoping to serve as a living example of what is possible with the right care and the right attitude.
It has not always been easy. When LeeAnne was diagnosed at the age of two, the doctors could not tell her parents very much about her condition. “At that time they just told them ‘we don’t know what the problem is. Go home and pray.’ We know so much more now, but it is still very scary. People fear the worst.”
LeeAnne said she loves working with the ACHA to offer guidance and direction for people who often don’t know where to begin. “We offer them encouragement, talk to them about what to expect as they age, and just by coming out the walks and other events we show them that they really can have a future, a fulfilling life.”
That’s not to say there are not dark times, fears, setbacks and uncertainties. “It’s difficult not to get away from the depressions. We all know what will happen down the road, so you have to remind yourself to live life to the fullest now. Yes, you struggle, but you keep fighting.”
“Everywhere you look there is life, in every sense of the word.”
Dr. Fontanet said it is encouraging to see so many people coming out to the heart walks. “We have children under the age of two all the way up to adults in their fifties. Parents who are living with the condition come with their healthy children. Other parents come with their children who are just beginning to experience life as a congenital heart defect patient. Everywhere you look there is life, in every sense of the word. Children and parents of patients see for themselves that they can anticipate a bright future, families of their own. A normal, productive life.”
Those interested in learning more about Congenital Heart Disease are encouraged to CLICK HERE or to contact Florida Medical Clinic at any of their local cardiology offices:
2100 Via Bella Blvd. Ste. 202
Land O Lakes 34649
601 5th Street S Ste. 711
St. Petersburg, FL 33701
3003 West Martin Luther King
Tampa, FL 33607
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