When young hearts fail: Amanda's story
Amanda Fuller talks about her heart failure the way most people talk about the weather.
That's because for Fuller, 28, congestive heart failure has been a fact of life for five years.
Fuller was born with a rare condition known as transposition of the great vessels — a congenital heart defect in which the aorta and pulmonary arteries change the way blood circulates through the body and reduce oxygen flow.
Today, standard newborn screenings can detect the low oxygen levels that may indicate a heart defect, and corrective surgery can treat the condition within the first days of an infant's life.
However, in Fuller's case, even though she displayed tell-tale symptoms, it took a few weeks to diagnose her heart defect and find the right surgeon to correct it.
"I was blue when I was born," Fuller says. "My family and doctor flew from San Jose, California to Boston. I was the twenty-sixth patient to survive this kind of surgery, when I was two-and-a-half months old."
The procedure placed a pacemaker in Fuller's heart and saved her life. It managed her heart condition until 2010, when she began showing signs of class III heart failure.
Fuller underwent another surgery, this time to replace the pacemaker with an implantable cardioverter-defibrillator, which better managed her heart's rhythmic abnormalities.
Her cardiologist, Tony Kim, MD, says it's uncommon for someone Fuller's age to have class III heart failure. He says his patient is okay at the moment but it's likely her disease will progress.
"Heart failure is a condition that gets worse over time, so eventually she may need therapies beyond medication," Dr. Kim says.
If that happens, he and the dynamic team at the Heart Failure Clinic at MultiCare Tacoma General Hospital will help take care of Fuller. Resources include support groups, social workers, pharmacists, surgeons, cardiologist, heart failure nurses and palliative care physicians.
"Together, we treat patients as holistically as we can," Dr. Kim says. "If we need support from other disciplines, we call on them. Our motto is to provide hope for patients with failing hearts."
Fuller has more than hope for her future. Every February, which is National Heart Month, she is inspired to paint her nails to help start conversations about congenital heart defects.
She wants people to know young people have heart problems, too, and says she thinks about the need to raise awareness more than she thinks about potentially needing a heart transplant.
"I've had a heart problem and pacemaker my whole life," Fuller says. "I'm alive; that's what matters. If someday I need a heart transplant, then bring it."
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About The Author
Jen Rittenhouse is the social media manager for MultiCare and Mary Bridge Children's Hospital. She writes stories that connect people with hospitals, health care and each other. You can reach her at [email protected].
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