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Caregiver Perspective: Divide and Conquer, A Father Shares The Journey

Caregiver Perspective: Divide and Conquer, A Father Shares The Journey

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 In this episode, we talk with David Hartley, PhD, MPH, who shares his deeply personal experience as both a caregiver and a scientist. David is chair of the board for Engraft, a learning network focused on improving outcomes in transplant and cellular therapy through collaboration and shared data. While he brings professional expertise in infectious diseases and epidemiology, our conversation centers on his journey as a father navigating his son Devin's stem cell transplant at age 13.We begin by discussing Devin’s sudden diagnosis after months of unexplained symptoms. Despite initial medical dismissal, David’s persistence—fueled by his medical background—led to a hematologist visit that quickly changed everything. From that point, their lives became dominated by a rapid series of decisions leading to a bone marrow transplant at a center hours from home. With a second child, sick parent, and full-time jobs, David and his wife adopted a "divide and conquer" strategy: she managed Devin’s care in-hospital, while he held down things at home.Throughout, David stresses the overwhelming nature of transplant. It’s relentless and multifaceted—emotionally, logistically, and financially. His wife tracked medications, schedules, and insurance battles. One notable success was avoiding a lawsuit thanks to her meticulous record-keeping and strong communication with their insurance provider. David’s role included managing home infusions and learning as much as possible about the transplant process to mitigate risks, particularly infections. They juggled roles and adapted constantly, ensuring redundancy in caregiving in case one of them became unavailable.We delve into the emotional toll and the universality of caregiver fatigue. David admits to not managing his own stress well, noting long-term impacts. He discusses a study linking chronic stress to telomere shortening (he explains what that is- see below for the link), highlighting the physical consequences of caregiver strain. Still, he emphasizes the importance of accepting help and finding moments for self-care, however small.David shares powerful insights on advocacy, highlighting it as a team effort rather than a confrontation. He and his wife advocated for Devin’s pain management, educational access, and protection from medical errors. He stresses the value of caregivers’ unique skills and the importance of focusing on the outcomes that matter most to each family—whether clinical or social.Later in the episode, David offers a scientist’s perspective on the variability in patient outcomes and the limitations of statistics in predicting individual experiences. His reflections underscore the complexity of transplant medicine and the value of shared data systems like Engraft. He also reminds us not to panic over single research findings, advocating for a balanced, critical view of medical literature.We close with the good news: Devin is now a healthy, wise young adult. David expresses deep gratitude to the care teams and support networks that helped them through. His story is a testament to resilience, collaboration, and the essential role of caregivers in the transplant journey.Engraft: www.engraftlearningnetwork.orgTriage Cancer: https://triagecancer.orgAARP article about Telomore: https://www.aarp.org/health/conditions-treatments/elizabeth-blackburn-stress-dna-hd/Thanks to our Season 17 Sponsors:Leukemia and Lymphoma Society (LLS): https://lls.org/and Incyte: https://incyte.com/ National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.nbmtLINK Website: https://www.nbmtlink.org/nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

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