The Heart-transplanted Child`s Diaries at the Primary Community Clinic

Background: Pediatric heart transplantation has become more acceptable; however, unexpected death may occur while the transplanted-child at home.

At this study, we aim to disclose the diary of two heart-transplanted children, after discharge to their residence home, and follow the path of handling them at peripheral-community-clinics, and the way the primary care physician (PCP) copes with dilemmas and difficult decisions, in times, the transplant cardiologists were not available.

Relying on his general education, regarding this fraught with risks medical situation, the PCP has his own means, for disclosing related clinical signs of allograft rejection or dysfunction, which had evaded his attention in random visits.

Method and Results: we collected data from files of three transplanted-heart-children, between the years 2005-2018. For one patient, we recorded 122 Scheduled visit every month, and 402 incidental ‘non-scheduled’ visits. Only 8% of all visits culminated in initiated referrals to heart-transplantation center.

Conclusions: The PCP can withhold vain referrals to specialized centers, without negatively affecting prognosis. We have learnt, retrospectively, that there are two reasons why incidental visits frequently leave out critical information for the PCP. First, when parents of the heart-transplanted kid refrain from telling about pointing events of rejection or dysfunction; and second, is that important information might evade the PCP’s attention in the rush of work. We have solved this issue by the option of “Scheduled Visits Every Month” [the SVEM], a medico-legal indispensable means for disclosing signs of rejection and dysfunction, in addition to being a legal document.

Keywords: Congenital heart disease. Heart failure. Heart transplantation. Implanted-heart rejection. Sudden death after heart transplantation. SVEM.