When the Provider Becomes the Patient: Marisa Nally’s Story
By Marisa Nally, APRN-NP, FNP-C
I am a nurse practitioner who knows firsthand what it is like to be a congenital heart patient at Lurie Children’s Hospital. In addition to being a former cardiac patient, I am also a member of the hospital’s Cardiology Electrophysiology (Heart Rhythm) team.
I was born three months premature, weighed under two pounds, and was diagnosed with a bicuspid aortic valve (BAV) soon after birth. BAV is an abnormally formed heart valve, the most common congenital heart defect, occurring in about 1% of the population. While BAV does not always require surgical intervention, patients diagnosed with BAV should be followed closely by cardiac specialists. I developed aortic stenosis, a narrowing of my aortic valve, in childhood which required multiple medical and surgical interventions. I underwent three major open-heart surgeries, at 9, 13, and 17 years old, to repair and eventually replace both my aortic and pulmonary valves.
In 2021, 15 years after my last open-heart surgery, I found myself increasingly short of breath. I noticed small but significant changes that left me feeling breathless and exhausted, even with low exertion activities. After extensive cardiac and pulmonary testing, my medical team determined that one of my heart valves was failing and I was deemed a candidate for a transcatheter pulmonary valve replacement. When I found out I could have this innovative procedure done at Lurie Children’s – even as an adult – my decision was immediate. As a nurse practitioner at Lurie Children’s, I have experienced and seen the exceptional care and meticulous thought that is put into every patient’s care and procedure. Between the cutting-edge technology, progressive interventional team, and distinguished doctors, all made what could have been a difficult decision an easy one for me.
Dr. Paul Tannous and Lurie Children’s Cardiac Catheterization Interventional team used the vessels in my legs to access my heart and insert a new heart valve through a cardiac catheterization procedure, miraculously all while my heart was still beating. I was in the hospital for less than 24 hours and was feeling better than I had in years after just a few days of recovery. Less than six months after my transcatheter pulmonary valve replacement, I went to California and hiked through the Redwood Forest, something I never could have done before my valve replacement. As I took in the beauty of the forest surrounding me, I could not help but feel overwhelmed with gratitude for Dr. Tannous and every single member of the cardiac team at Lurie Children’s.
I am extremely fortunate to have family and friends who have always prioritized my physical and psychological health. I actively encourage all of my patients to seek out the same kind of support, if not from their family and friends, then from a professional mental health provider. I feel strongly it is important for patients to talk about the fears, worries, and complicated feelings associated with cardiac issues, and sometimes they are not directly related to the medical procedures. For example, as a child one of my biggest concerns was how my scar would heal and how it made me look different from my friends. Today, I wear my scar with pride as a badge of courage, and I know it is largely because of the support and understanding I received as a child.
It is important for me to give back so I look for opportunities like this feature to share my story. I was influenced by the nurses who cared for me over the years. Specifically, my mother is a pediatric nurse and I grew up admiring her and appreciating the care she provided to all of her patients. I was also majorly influenced by a nurse who took care of me as a child when I was recovering from one of my major surgeries. She openly shared her own experiences having multiple open-heart surgeries in the past. Whether I am participating in an annual heart walk, speaking on a patient panel, offering words of support, or caring for a patient, I strive to bring encouragement and hope to everyone who crosses my path.
I am incredibly proud to be a nurse practitioner at Lurie Children’s and will be forever grateful to Dr. Tannous and his incredible team for giving me my quality of life back. I am looking forward to the future and to the many cardiac advancements on the horizon that will benefit me and my current and future patients.
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