Coronary heart transplant recipient’s journey: From affected person to advocate

Glen Kelley’s journey as a coronary heart transplant recipient got here full circle at this time in Prague, as he addressed attendees of the Annual Assembly and Scientific Classes of the Worldwide Society for Coronary heart and Lung Transplantation (ISHLT), together with members of his personal care groups.

As a highschool senior exterior of Peoria, Illinois, Kelley was recognized with stage-4 Hodgkin’s lymphoma and underwent eight months of chemotherapy and radiation. After 10 months in remission, the most cancers returned, and he acquired a bone marrow transplant. Along with his most cancers as soon as once more in remission, he completed faculty and went on to take pleasure in a particularly lively life for the subsequent 17 years, snowboarding, biking, climbing mountains, and even operating marathons.

Then out of nowhere, Kelley suffered a coronary heart assault at 36. Docs discovered his proper coronary artery practically utterly blocked and positioned three stents to prop it open. Over the subsequent decade, his ailing coronary heart would require extra stents, valve replacements, and never one however two coronary artery bypasses on the College of Minnesota Medical Middle in Minneapolis. By 2015, Kelley was in coronary heart failure -; most probably the results of the radiation he acquired in his teenagers.

He was positioned on the transplant listing and finally transferred to Baylor College Medical Middle in Dallas, the place he acquired a brand new coronary heart in 2016. An unusually lengthy and tough restoration interval adopted, throughout which he suffered kidney failure, a fungal an infection, and two bouts of organ rejection. In 2019, he acquired his second organ transplant, a kidney not directly donated from his youngest son.

I had help alongside the best way from my physicians and healthcare suppliers to volunteers on the help group Second Probability for Life. I do not assume my outcomes would have been practically as profitable with out the help I acquired all through my journey.”

Glen Kelley, coronary heart transplant recipient

Regardless of all his well being issues, Kelley led a profitable profession in IT and advertising and marketing, together with 17 years at IBM. Nevertheless it was by his experiences as a affected person that he realized his true calling.

“My metrics changed from how well I did at my day job to how many patients I could help,” he stated. “Patients became my currency.”

Kelley devoted himself to supporting sufferers coping with superior coronary heart illness by in-person and telephone visitation and help teams, in the end serving as president of Second Probability for Life for 4 years. Throughout his tenure, the group created an alliance with the worldwide group Mending Hearts, the world’s the most important peer-to-peer coronary heart affected person help group with 115,000+ members.

With Mended Hearts, Kelley had a chance to proceed working in affected person schooling and help -; and to turn out to be extra concerned in advocacy and laws on the state and federal ranges. As we speak, he serves because the group’s Affected person Voice and Advocacy Chief.

“Working in advocacy allowed me to help not one but thousands of patients at a time,” he stated.

As we speak, Kelley fills his days with telephone calls to sufferers, in-person visits, and advising. In his new function as Affected person Advocate Trustee on ISHLT Basis Board of Trustees, Kelley will assist to make sure the Basis agenda addresses points that matter most to sufferers with superior coronary heart and lung illness.

His highest calling but could also be serving the US’ new Organ Procurement and Transplantation Community (OPTN). Created final fall by a bipartisan legislation, OPTN is charged with revamping the nation’s organ transplant system. Kelley was elected thoracic affected person consultant to OPTN’s Board of Administrators.

“Patients always need support, whether they know it or not, at some point in their journey,” stated Kelley. “This motivates me to do the work I do. I want to empower patients through support and education and teach them how to self-advocate.”