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Perspective


Monica Horn, RN, CCRN-K, CCTC
Mhorn@chla.usc.edu

Jacqueline Szmuszkovicz, MD
Jszmuszkovicz@chla.usc.edu
Children's Hospital Los Angeles
Los Angeles, CA, USA



Recently, a colleague shared that during a heart transplant information session a family member of a transplant candidate exclaimed in frustration, "You medical people just don't understand how this feels!" Such expressions of despair may happen at any time throughout the transplant process: at the time of a devastating diagnosis of a life-threatening condition for which the only intervention left to offer is transplant, while waiting many months for a donor organ, during surgical procedures or when dealing with complications of "transplant life" in spite of strict medical adherence. The distress can be overwhelming. Transplant teams must have the resource structures to reach out with supportive care and therapeutic direction for transplant families to develop the skills to navigate the twists and turns of life.

As medical and nursing professionals, we all realize our own families have no immunity to medical problems either.

links imageMitchell was born March 24, 2006. He seemed like a beautiful normal baby with an older brother and two loving, caring parents, Marnie and David. Having an episode of viral bronchiolitis at 17 days of age, he developed a chronic cough with wheezing unresolved by steroids and bronchodilators at 6 months of age. A chest x-ray showed cardiomegaly, so an echocardiogram was obtained which showed a shortening fraction of 15%. Mitchell's mother, a pediatrician, knew all too well what this meant as they began further medical investigation.

The baby was admitted to a pediatric hospital near his home by a cardiologist for heart failure support, and began a workup and treatment for myocarditis. Within a week with some of his workup studies still pending, his heart failure support was increasing, so he was transferred to Children's Hospital Los Angeles and listed for heart transplant for dilated cardiomyopathy on November 21, 2006. He underwent more testing including a cardiac catheterization to assess his pulmonary vascular resistance, during which he had several episodes of supraventricular tachycardia requiring adenosine administration.

The next day was Thanksgiving Day in the ICU marked by careful fluid management, enteral nutrition optimization and heart failure medication adjustments. Comfort measures were attempted frequently for heart failure associated liver enlargement, diaphoresis and feeding intolerances.

Christmas Day was a Monday. The cardiologist rounded noting multiple inotropic infusions and a diuretic drip as well.

A fever marked New Year's Day 2007, another Monday. Cultures were drawn and empiric antibiotics started. When his blood pressures began to dip a bit, an epinephrine infusion was added. His PICC line was changed.

By mid-January, he had been intermittently febrile with increasing tachycardia and tachypnea and periods of "semi-duskiness" and cool extremities. The PICU and his family had seen two other patients receive heart transplants while they also waited for a suitable donor. Days and nights were filled with the family's efforts to provide as much comfort as possible for their baby to cope with the extreme discomforts of heart failure, paired with the fear of the possibility of not receiving a donor heart in time

On February 6, 2007 with four inotropic infusions supporting him, a suitable donor was finally identified! Vaughn Starnes, MD and his team performed the heart transplant surgery. Within about three weeks after transplant, Mitchell was discharged home at last!links image

This year, 2017, marked Mitchell's 10 year heart transplant anniversary! He has been quite active as seen on his "Heart Day" anniversary card photo collage.

Coincidentally, around the time of Mitchell's 10-year celebration, his uncle, a cardiac surgeon, was called away to work to perform a heart transplant.

Along with our career and personal experiences, our perspectives may also mature. Much has been published about promoting clinical empathy while limiting self-disclosure in our interactions with patients. Whether or not we share small parts of our life experiences with others, empathy will not only make us better people, but also allow us to be better medical and nursing professionals in our daily practice...because we actually do understand. ■

Disclosure Statement: The authors have no conflicts of interest to disclose.




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