{"id":3373,"date":"2014-03-03T14:11:18","date_gmt":"2014-03-03T19:11:18","guid":{"rendered":"https:\/\/www.med.unc.edu\/surgery\/spotlight-on-17-year-old-patient-waiting-for-a-heart-transplant\/"},"modified":"2020-12-10T07:43:48","modified_gmt":"2020-12-10T12:43:48","slug":"spotlight-on-17-year-old-patient-waiting-for-a-heart-transplant","status":"publish","type":"post","link":"https:\/\/www.med.unc.edu\/surgery\/spotlight-on-17-year-old-patient-waiting-for-a-heart-transplant\/","title":{"rendered":"Spotlight on 17 Year Old Patient Waiting for a Heart Transplant"},"content":{"rendered":"
\n

Courtney, 17, is like most teenagers. She likes to spend time with her friends. She enjoys playing the piano. She loves her 1-year-old rat terrier puppy. She hopes to get into her dream college and start life as an independent young adult.<\/p>\n

But Courtney also deals with health concerns most teenagers never think about\u2014not least of which is a question important to her immediate future: when am I going to get my heart transplant?<\/em><\/p>\n

A lifetime journey<\/h3>\n

Courtney was born at a community hospital in Tarboro, N.C. in 1996. A few days after her parents, Debi<\/strong> and Scott<\/strong>, took her home from the hospital, they noticed her breathing was loud and that she had difficulty eating and breathing at the same time.<\/p>\n

\u201cWe took her to the pediatrician, and they sent her to Pitt Memorial Hospital in Greenville,\u201d says Debi. \u201cThey heard some murmurs in her heart and at that point, the pulmonologist at Pitt referred her to the pediatric pulmonology and cardiology team at UNC. It wasn\u2019t a big emergency at that point. There was no NICU or PICU. It was just a watch her and wait kind of thing.\u201d<\/p>\n

Courtney was diagnosed with an atrial septal defect, a congenital heart defect that’s commonly called \u201ca hole in the heart.\u201d The pediatric cardiology team at UNC repaired it in May 1997, but in January of 1998, Courtney went into heart failure.<\/p>\n

\u201cThe doctors in the PICU back then just did everything in their power with medicines and treatments to keep Courtney\u2019s heart going without having to transplant,\u201d says Debi. \u201cAnd because of the doctors and the therapies and, of course, prayer, her heart regained function.\u201d<\/p>\n

In the years since, Courtney has been a frequent visitor to N.C. Children\u2019s Hospital, visiting pulmonologists, cardiologists, audiologists, neurosurgeons and neurologists, endocrinologist, orthopaedists, geneticists and even dentists. But it wasn’t until the summer of 2013 that her condition became more serious once again.<\/p>\n

In June, Courtney was admitted for surgery to replace the mitral valve in her heart. Cardiothoracic surgeon, Michael Mill, MD<\/strong>, didn\u2019t have to perform a full replacement, however, and was instead able to fix her existing mitral valve.<\/p>\n

\u201cWe went home,\u201d says Debi. \u201cCourtney started applying for jobs. She got her driver\u2019s license. She turned 17. We thought she was on her way to having a bright future.\u201d<\/p>\n

As summer wore on, however, Courtney wasn’t feeling quite herself.<\/p>\n

\u201cSometime in August, she started getting really tired again,\u201d says Debi. \u201cWe went to her doctor here [in Nashville, N.C.], and they sent us to Chapel Hill. Lo and behold, she was in heart failure.\u201d<\/p>\n

Courtney was admitted to pediatric intensive care, her family devastated as they watched her condition deteriorate by the day. Desperate to save her life, Courtney’s medical team at UNC tried something they don’t often attempt with pediatric patients: they implanted a left ventricular assist device (LVAD).<\/p>\n

Usually a treatment reserved for adults, the LVAD, a pump that keeps Courtney’s left ventricle functioning, is a temporary solution until Courtney can get a heart transplant. Adults can live with LVADs for up to two years.<\/p>\n

\u201cIt was a big moment for everyone,\u201d remembers Debi of the successful surgical procedure. \u201cIt was a big moment for us as parents, because she survived as a result of this pump. We were all celebrating, but I was more focused on celebrating the fact that they had saved my child.\u201d<\/p>\n

Courtney’s doctors were impressed with the bravery she showed in the face of such a serious a situation.<\/p>\n

\u201cThe evening of her surgery, she woke up calmly, her breathing tube in place, and asked for a pen and paper,\u201d remembers Courtney’s cardiothoracic surgeon, Jennifer Nelson, MD<\/strong>. \u201cOn that paper, the first thing she wrote was, ‘Thank you. Courtney’. I still have a picture of that note. Every time I look at it, I am blown away by her bravery.\u201d<\/p>\n

\u201cIt made me cry. It made her mom cry. It was awesome,” adds Courtney’s crical care doctor, Benny Joyner, MD<\/strong>.<\/p>\n

\u201cWithin a week, she was sitting up, attempting to eat, and within a month, she was walking.”<\/p>\n

Courtney\u2019s LVAD is connected to her at all times. It hooks up to a controller that functions using batteries or an electrical outlet. Courtney puts the machine in a backpack that she takes with her everywhere she goes.<\/p>\n

\u201cShowers are difficult. Getting from point A to point B is more difficult,\u201d says Debi. \u201cBut at the same, we\u2019re so thankful. I\u2019m just so glad she had an option.\u201d<\/p>\n

\u201cIt\u2019s hard going through all of this,\u201d says Courtney. \u201cI\u2019m missing a lot in my personal life. I could have done more extracurricular activities if it wasn\u2019t for this health stuff. I wish I could spend more time with my friends.\u201d<\/p>\n

But, says Debi, even though it\u2019s hard for Courtney, the family maintains a positive outlook on her medical challenges.<\/p>\n

\u201cWe could have a poor-me attitude or sulk about it,\u201d says Debi. \u201cBut Courtney\u2019s been dealing with something all the time, for the past 17 years.”<\/p>\n

\u201cCourtney is no ordinary young lady,\u201d adds Dr. Joyner. \u201cHer journey has been a difficult one, with time spent in and out of the hospital for a variety of ailments. But all the while she’s maintained a stellar school record and a love for math.\u201d<\/p>\n

\u201cCourtney is one of the most gracious, kind-hearted, ‘glass-half-full’ patients I have ever cared for,\u201d adds Dr. Nelson. \u201cIt was incredibly inspirational to see Courtney improve after receiving her VAD. Watching her get up to walk after weeks of struggling just to turn in bed was a great moment for our whole team. Before long, her mother showed us videos of Courtney dancing along with Dance, Dance Revolution in the hospital. It was hard to hold back tears.\u201d<\/p>\n

The road ahead<\/h3>\n

Unfortunately, Courtney\u2019s heart journey, which began at UNC almost two decades ago, won\u2019t end with her transplant at N.C. Children’s Hospital. The family\u2019s insurance company won\u2019t cover the transplant in-network at UNC. It comes as a hard pill to swallow for the family.<\/p>\n

\u201cOur relationships at N.C. Children\u2019s are priceless,\u201d says Debi. \u201cWe know the campus with our eyes closed. We\u2019re so comfortable her medical team. We trust them. They\u2019ve known Courtney for 17 years, and they would do anything to keep her alive.\u201d<\/p>\n

\u201cI have a great bond with my nurses\u201d adds Courtney. \u201cI\u2019m Facebook friends with a lot of them, and we have great relationships with each other.\u201d<\/p>\n

Debi especially appreciates how the Children’s Hospital staff treats the whole patient, rather than just the diagnosis.<\/p>\n

\u201cIt\u2019s so wonderful what they do to engage their patients,\u201d says Debi. \u201cThere are so many things Courtney has to look forward to instead of just dreading all the tests and blood draws. It makes a big difference, they treat her on a personal level\u2014and they take care of the family. We’re important to them, too.\u201d<\/p>\n

\u201cThey made sure we knew where to get food, and they made sure to take care of her brother and us. Even if it\u2019s just bringing us an extra cup of ice cream that they have in the freezer, they always took care of us.\u201d<\/p>\n

As Courtney faces a heart transplant at a different hospital, her mom feels sure that, despite leaving the comfort of N.C. Children\u2019s Hospital, the staff at the new hospital will grow to love Courtney, too.<\/p>\n

\u201cThe transplant process is moving along,\u201d says Debi. \u201cIt\u2019s not an emergency. Courtney could live with the LVAD for up to two years, but we know Courtney is ready to put this whole thing behind her.\u201d<\/p>\n

And even with the transplant, Courtney’s heart journey won’t be over.<\/p>\n

\u201cWe know that a transplant isn\u2019t a fix-all. It has to be cared for with medicine, procedures, tests,\u201d says Debi. \u201cWe\u2019ve been educated pretty well about it. But we have no choice. It will give her another 15 years or more to reach her goals. We know that a new heart doesn\u2019t last forever, but we’ll get to that when we get there. Right now, we want her quality of life to be the very best possible.\u201d<\/p>\n

In the meantime, as Courtney waits for her new heart, she looks forward to the future it will provide.<\/p>\n

\u201cI just want to be able to finish high school and go to college,\u201d says Courtney. \u201cI want to become a teacher at the deaf school. I love sign language\u2014I taught myself using YouTube and books.\u201d<\/p>\n

As they reflect on Courtney\u2019s heart journey to-date, the family is filled with gratitude.<\/p>\n

\u201cWe thank everyone at the hospital for everything they\u2019ve done,\u201d says Debi. \u201cCourtney wouldn’t be alive without that heart working for her.\u201d<\/p>\n

 <\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

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