Juicebox Podcast: Type 1 Diabetes
Episode #1680 – "Islet Cells and Second Chances"
Host: Scott Benner
Guest: Robin
Date: November 13, 2025
Episode Overview
This moving episode centers on Robin’s 18-year journey with type 1 diabetes, interwoven with her experiences of misdiagnosis, personal hardships, and eventual participation in a groundbreaking islet cell transplant clinical trial. Robin’s story illustrates the complexity of life with type 1 diabetes, the resilience required to cope with chronic illness alongside personal adversity, and hope offered through medical innovation. Listeners also gain a candid look at stigma, mental health challenges, and the transformative power of supportive care and research breakthroughs.
Key Discussion Points & Insights
1. A Wild Diagnostic Odyssey
- Initial Diagnosis Missteps (02:47–13:23)
- Robin was diagnosed with type 1 diabetes at age 22 during her first pregnancy, but the process was prolonged and confusing.
- Doctors initially believed she had HIV due to a series of false positive tests, leading to three months of stress and anxiety while pregnant.
- Despite consistently high sugar in her urine, medical staff didn’t promptly address or communicate the diabetes risk.
- Eventually, due to recurrent highs and lows and inability to stabilize her sugar with oral meds, she was hospitalized and (unofficially) treated as type 1 with insulin.
- Quote
“They told me that these bands came back positive. … They said, well, we think you’re going through seroconversion, which is that you just contracted HIV… I was freaking out... I had everyone I ever even kissed get tested…”
— Robin (04:52)
2. Postpartum Dismissal & Struggle for Proper Care
- Systemic Misunderstanding (16:27–19:39)
- After delivery, Robin's diabetes was still poorly recognized and dismissed as type 2 or gestational. She was repeatedly misdiagnosed and undertreated.
- Persisting symptoms (fatigue, numbness) were dismissed by providers.
- Finally, a fresh-out-of-school GP ran the right tests and diagnosed her as GAD65 positive—Type 1.
- Quote
“I had a physician’s assistant... she also treated my mom... she said, ‘You’re probably type two, you’re a little overweight.’ I’m like, ‘I just had a baby six weeks ago.’”
— Robin (16:41)
3. Managing Diabetes while Navigating Personal Trauma
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Marital Crisis and Diabetes Management (20:21–31:57)
- Robin’s first husband was later diagnosed with bipolar disorder, which led to marital breakdown, infidelity, and abuse—including tampering with her insulin pump to assault her.
- Divorce was prolonged and complex, with Robin facing emotional and physical abuse.
- Subsequent relationship was also abusive; her second partner was verbally and physically abusive and struggled with alcoholism.
-
Quote
“He would turn off my insulin pump and let my blood sugar go high and then record himself sleeping with me so that I wouldn’t wake up... It was an awful, awful situation.”
— Robin (24:39)
4. The Impact of Chronic Illness Stigma
- Struggles with Disclosure & Self Image (49:05–49:58)
- Robin felt embarrassment and stigma about her diabetes, often hiding her condition at work and in relationships.
- She associated diabetes with decreased attractiveness and acceptability in romantic and professional settings.
5. Medical Innovation: Islet Cell Transplant
-
Turning Point – Seeking a Cure (43:23–56:56)
- Robin’s endocrinologist recommended she seek evaluation at the University of Chicago for potential transplant or clinical trial.
- She connected with Dr. Piotr Witkowski, transplant surgeon and islet cell research pioneer.
- After extensive screening, Robin enrolled in the phase II Cernova islet cell pouch trial, involving multiple abdominal surgeries to implant islet cells.
- Initial pouches stabilized her sugars; a subsequent intravenous liver portal transplant (Oct 9, 2024) led to full insulin independence.
- Currently, Robin maintains normal blood sugars on minimal anti-rejection medication, travels monthly for IV infusions, and reports a transformative impact on her quality of life.
-
Quote
“They took islet cells and stuck them in my liver vein portal, and I woke up not diabetic. That was wild.”
— Robin (55:51)
6. The Psychological Shift and Its Everyday Rewards
-
Freedom from Daily Fear (57:01–59:12)
- The greatest transformation wasn’t diet, but release from the mental burden and fear of hypoglycemia—able to sleep without worry, live actively, and parent without constant diabetic interruptions.
-
Quote
“What I cared about was going to bed and not hearing a beep, sleeping through the night, not worrying that my kids were going to find me dead in the morning.”
— Robin (57:01) -
Robin still wears a CGM out of caution. She acknowledges ongoing anxiety about the possibility of graft failure, but says the benefits far outweigh this uncertainty.
7. Candid Discussion of Graft Risks, Trade-offs, and the Future
-
Managing Expectations (70:02–72:46)
- As with all transplants, there is risk of cell “burnout” and need for repeat procedures. Research is progressing, but this is not a universal or permanent cure for all.
- Robin remains pragmatic but hopeful, seeing her path as a hard-won second chance.
-
Quote
“It’s not an end-all, be-all, but what I will say is I’d do it a thousand times over again.”
— Robin (71:55)
8. Building a New Life
- A Supportive Relationship and Stability (41:32–66:12)
- Robin meets a supportive partner, Steve, blending their families (7 girls among them), and moves forward with optimism.
- She describes a respectful, open dynamic and continued commitment to advocating for her kids’ health.
- Robin’s experience is ultimately one of resilience, hope, and new beginnings.
Notable Quotes & Memorable Moments
-
On Medical Gaslighting and Being Dismissed:
“I would stand in this drive through... and literally fall asleep... I was freezing to death... I probably went to my doctor, the urgent care, the hospital, probably 30 times. Like, no joke.”
— Robin (16:27–17:14) -
On the Mental Burden of T1D:
“It's embarrassing listening to your pump beep. You're in a meeting, you know when your pump's going off and you know they're like, ‘What is going on over there?’”
— Robin (58:51) -
On the Meaning of the Transplant:
“Now, later on, after being a year out, I can eat things that I would have never ate. I didn't eat mashed potatoes in 10 years, but I was like, these are pretty good.” — Robin (62:44)
-
Scott’s Take on Robin’s Journey:
“The universe owed you a win.”
— Scott (74:33)
Important Timestamps & Segments
- 03:45–08:18: HIV testing misadventure & psychological toll
- 10:14–13:23: Delayed diabetes diagnosis during pregnancy
- 16:27–19:39: Postpartum health crisis, provider dismissals, and proper diagnosis
- 20:21–26:10: Marital breakdown, abuse, and diabetes mismanagement
- 29:09–36:03: Second abusive marriage; relationship to diabetes and self-worth
- 37:03–40:48: Sudden kidney scare leads to partner rejection and new beginning
- 41:32–43:10: Meeting current partner; finding genuine support
- 43:23–56:56: The transplant journey: screening, surgery, and recovery
- 57:01–59:12: Psychological benefits beyond food—freedom from fear
- 70:02–73:28: Addressing risks of graft failure, the reality of “cures”
- 74:14–75:13: Fate, perseverance, and hope for others
Tone & Language
The conversation is frank, emotionally honest, and often peppered with humor despite painful content. Robin shares her story without self-pity, focusing on the realities of both her health and relationships, seeking to educate and give hope. Scott’s responses are empathetic, supportive, and laced with light-hearted asides to balance the weight of the narrative.
Conclusion
Robin’s journey with type 1 diabetes is as much about surviving the unpredictability of life—misdiagnosis, stigma, and abuse—as it is about chronic illness. Her participation in islet cell research signals not only hope for her, but for many who feel trapped by diabetes and its burdens. Her story is a testament to perseverance, the lifesaving importance of compassionate medical care, and the promise still unfolding in diabetes research.
Resources Mentioned
- Dr. Piotr Witkowski, University of Chicago: Islet cell and pancreas transplant research
- TrialNet: For screening relatives of type 1 diabetics
- Cernova Pouch Trial: Innovative islet cell delivery method
- Contact details in show notes for those interested in exploring clinical trials
For more episodes and resources, visit JuiceboxPodcast.com