Strength in Vulnerability: CHD Patients Turn Caregivers

(00:00:00) Strength in Vulnerability: CHD Patients Turn Caregivers
(00:00:05) Intro & Guest Introductions
(00:03:11) Donna: From Patient to Parent-Caregiver
(00:05:04) Dillon: Fatherhood & Jackson's Diagnosis
(00:06:03) Karen: Caring for Two with Parkinson's
(00:07:35) Balancing Own Health with Caregiving
(00:11:53) Karen's Medical Advocacy: The Decision Tree
(00:14:53) Does Patient Experience Help or Hurt as Caregiver?
(00:20:15) What Healthcare Teams Should Understand
(00:24:41) Advice for CHD Adults Becoming Caregivers
(00:31:42) Audience Q&A: Having Children with CHD
(00:37:16) UK Healthcare Challenges & Annie's Caregiver Journey
(00:40:06) Generational Progress in Cardiac Care
(00:42:31) Frank Jaworski: A Healthcare Professional's Perspective
(00:45:00) Co-Producer Reflections
(00:54:44) Biggest Takeaways & Closing

The day you realise you’re booking more appointments for someone you love than for your own heart can feel like crossing an invisible line. We sit with that role reversal and get specific about what it looks like when adults with congenital heart disease become caregivers while still managing lifelong cardiac care, including adult congenital heart disease follow-up, medications, fatigue, and the mental load that never really shuts off.

We’re joined by Donna Giles, who lives with a complex single ventricle and Fontan circulation while advocating for her two adult children with cerebral palsy, and she shares the slow shift from “parent” to “carer,” plus the hard work of letting a care team step in. Dillon Wheatley, a CHD survivor and father, walks us through the heartbreak of a prenatal diagnosis, the terror of newborn open heart surgery, and how hands-on hospital education made home care possible. Karen Krymski reflects on years of caregiving for loved ones with Parkinson’s disease, the discipline of medication management and speaking up, and what happens when grief and stress collide with congestive heart failure risk.

Across their stories, we keep coming back to caregiver burnout, advocacy, emotional intelligence in healthcare, and the single best piece of advice: don’t try to walk this road alone. If you’ve ever been the patient and the caregiver, you’ll hear your own thoughts out loud, and you’ll leave with practical language for asking for support. Subscribe, share this with someone who’s carrying a lot, and leave a review so more CHD families can find these conversations.

Here is the link to Dillon Wheatley's book
Here’s Donna’s Substack--Life and Other Stories

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