HelpHOPELive would like to thank Elizabeth D. Shore, MSW, CSW, Social Worker for the Cardiac Transplant and Mechanical Circulatory Support Programs at Thomas Jefferson University Hospital for this special guest blog post in honor of American Heart Month.
This month marks the 50th year of American Heart Month. It’s a chance to pause and consider heart health and the miraculous advances in detection and treatment of cardiac disease. Heart disease includes diseases of the blood vessels, such as coronary artery disease; heart rhythm problems (arrhythmias); heart infections; and heart defects at birth (congenital heart defects). As a social worker for the cardiac transplant and mechanical circulatory support programs at Thomas Jefferson University Hospital, I have first-hand experience with many options for end-stage heart failure, and would like to share my insights on the current treatment options most commonly pursued in the United States.
Heart transplantation continues to be the “gold standard” treatment for end-stage heart failure, and a large number of patients live for 20 or more years after their transplant according to a study published in the February issue of Annals of Thoracic Surgery. Both in quality of life and longevity, physicians and patients alike turn to cardiac transplant as their ultimate goal. However as I write this, across the United States the organ transplant waiting list includes 12,313 candidates according to the US Dept. of Health and Human Services, while each day only about 79 people receive organ transplants. As a result, an average of 18 people die each day waiting for transplants that don’t take place because of a shortage of donated organs.
To combat the shortage of donor hearts, a durable device was needed that would close the gap between death from end-stage heart failure and time spent waiting for a donor organ for transplantation. In 2001, the FDA approved the first generation of Left Ventricular Assist Devices (LVADs) as a bridge to transplant, thus allowing patients to not only survive until transplant, but to thrive! In the past 13 years these devices have gotten smaller and perform better, allowing patients to lead essentially normal lives until a suitable donor becomes available. Continued refinement in LVAD therapy is underway with great promise for minimal lifestyle limitations right around the corner. At the same time, work continues with the public to raise organ donation awareness and expand donor pools to increase the frequency of transplantation.
Patients and families needing and living with cardiac transplants or LVADs face tremendous medical expenses even when they have medical insurance. More often than not, patients are requiring both LVADs and a transplant, in effect doubling the duration of treatment and recovery and thus the associated costs of care. Families are finding that they are in need of community support and access to funds raised more than ever as part of the LVAD and cardiac transplant preparedness plan.
As a social worker in this field for 20 years, I have been amazed by the advances in technology that not only save lives but improve the quality of life as well. The incorporation of LVAD therapy has been a game changer for patients in desperate need of heart transplantation. Unfortunately, the insurance industry had not expanded coverage sufficiently to relieve the financial toll this double therapy places on patients and families. The saving grace to what could be a financially devastating experience is the opportunity to integrate fundraising as part of the battle against heart disease. The results of such efforts which enable patients and families to lean on community support to meet uncovered medical expenses related to transplantation are not just necessary but truly heartwarming.