Three Young Adults. 22 Years.

Interview with Jill Woodworth, mother of 4, three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, frustrating, heart-breaking, and inspiring. Silos and boundaries,  crossing the threshold, primary physician,  autonomy, self-management. One of the scenarios with the most boundaries, cracks, and thresholds is where young adults with complex medical conditions transition from pediatric to adult care. “If there’s any communication, that has to go through me. Unfortunately, I have to network that system and that’s just really cumbersome.” “I can also help other people that have questions about how to transition. I’m certainly not an expert. But boy, it is something that I wish I always say do it the earlier the better. The earlier you can think about it the better.” “He’s learning. Like I taught him to get his own meds, you know, it’s kind of meeting each one of them where they are and what they can do. But it’s hard.”

Throughout my 45-year career in health care, I’ve been attracted to boundaries, the cracks between those boundaries, and have found myself drawn to welcoming people as they cross the threshold between those boundaries and cracks. Healthcare professionals often refer to silos. The silo of cardiology, the silo of surgery – silos by specialties. Then the silos of setting – hospital, home, clinic, long term care, emergency care, intensive care. Then the silos of professions – doctors, surgeons, nurses, therapists, then “other” professionals – social workers, acupuncturists, chiropractors. So, you see where I’m coming from when I say boundaries and cracks. Well, I’m a fixer by nature.  Not the Michael Cohen variety of fixer but making it better. And the opportunity for better can be found at boundaries and cracks. These boundaries are never going away. It’s a product of specialization. To be an expert in something you need boundaries. “My specialty is within these boundaries.” Therefore, fixing can be found when we treat boundaries as thresholds and welcome people across thresholds.

In my experience, one of the scenarios with the most boundaries, cracks, and thresholds is where young adults with complex medical conditions transition from pediatric to adult care.

So, welcome to the Health Hats podcast series about young adults transitioning from pediatric to adult medical care. In this series, I will interview young adults with complex medical conditions, their parent or guardians, point-of-care clinicians caring for these young adults, and whoever else I find of interest in this fascinating, frustrating, heart-breaking, and inspiring world.

My first interview of the series is with Jill Woodworth, a mother of four who has three children with Tuberous Sclerosis. Tuberous Sclerosis Complex or TSC is a genetic disorder that causes tumors to form in various organs, primarily the brain, eyes, heart, kidneys, skin and lungs. It’s also the leading genetic cause of both epilepsy and autism. I met Jill through her podcast, TSC Talks. I reached out to her and we set up a two-way interview. You can find Jill’s interview of me on her website. It’s Episode 28, Ripple. You can find these links in the show notes.

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Episode Notes

PREFER TO READ, HARD OF HEARING, OR DEAF?

Find full transcript here

Time-stamped sections

Series introduction. 1

Podcast introduction 2:32. 2

Episode introduction 03:04. 2

Please contribute 04:01. 2

One Parent. Three Young Adults. 22 Years.  04:28. 2

Silos and boundaries 04:48. 3

Transitioning? The earlier the better 09:56. 4

Primary physician who knows you best? 12:52. 5

Autonomy. Meet them where they are 12:52. 6

Is there hope for the system? 18:01. 7

How do you find a minute? 20:06. 8

Your own health 21:40. 8

Fascinating, frustrating, heart-breaking, and inspiring 23:45. 9

Follow my blog and podcast 24:11  9

Links

Tuberous Sclerosis Alliance

TSC Talks Jill Woodworth’s podcast

Episode 28, Ripple Jill Woodworth interviews Danny on TSC Talks

Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer

Photo by pawel szvmanski on Unsplash

About the Show

Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, old, white man with privilege, living in a food oasis, who can afford many hats, and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once.  We will listen and learn about what it takes to adjust to life’s realities in healthcare’s Tower of Babel.  Let’s make some sense of all this.

My guests and I reflect on what works for people, professionals, and communities in their journeys toward best health: learning, making choices, communicating, and adjusting to realities. We can range from personal, clinical, technical, entrepreneurial, organizational, to whatever interests me at the moment. Join the ride!

Readers of Health Hats, the Blog, we will publish a Podcast in at least two of each month’s weekly posts. To subscribe go to the blog https://www.health-hats.com/

The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. Material on this site created by others is theirs and use follows their guidelines.

Creative Commons Licensing

The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. Material on this site created by others is theirs and use follows their guidelines.

Danny van Leeuwen

About Danny van Leeuwen

Patient/Caregiver activist empowering people as they travel toward best health

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