Podcast Summary: Juicebox Podcast #1680

Episode Title: After Dark: Islet Cells and Second Chances
Host: Scott Benner
Guest: Robin
Date: November 13, 2025

Overview

This episode features Robin’s extraordinary, multidimensional journey through type 1 diabetes, misdiagnoses, tumultuous relationships, motherhood, and ultimately, a pioneering islet cell transplant procedure. Robin’s story is one of remarkable resilience, touching on trauma, survival, personal reinvention, and the hopeful frontier of diabetes research. Both host and guest maintain a conversational, candid, and sometimes darkly humorous tone throughout, making the story as engaging as it is powerful.

Key Discussion Points & Insights

1. A Confusing Diagnosis: From HIV Scare to Undiagnosed Type 1

• Misguided Medical System:
  • At age 22, newly pregnant, Robin was told her initial HIV test was "slightly positive," sparking months of anxiety despite a low-risk background.
    • Notable quote:

      “I don't think I've ever had to scrape my jaw up harder off a floor.” – Robin [03:45]

  • Over three months, repeated inconclusive HIV test results tormented her, exacerbated by her family history (her biological father died of HIV).
  • Ultimately, after CDC-recommended viral load tests, she was cleared, but remained traumatized by the ordeal.
• Delayed Diabetes Diagnosis:
  • Robin’s extremely high blood sugars during pregnancy were consistently noted in labs but never directly addressed by her OB for months.
  • Only after the HIV scare ended did her doctors mention “something else” – high sugars, probable gestational diabetes, but still not a clear type 1 diagnosis.
    • Quote:

      “[The doctor said]…we can't really tell you that you have diabetes because you are pregnant again.” – Robin [10:14]

2. Dangerous Early Management and the First Pregnancy

• Ineffective Treatment:
  • Robin was given glyburide (a type 2 diabetes medication), which caused wild blood sugar swings and pass-outs. She was eventually hospitalized and put on insulin.
  • Her first child was born healthy but “big,” likely due to unmanaged blood sugars during pregnancy.
• Persistent Medical Confusion:
  • Postpartum, symptoms of exhaustion, numbness, and constant fatigue were blamed on new motherhood and presumed type 2 diabetes instead of investigating further. Multiple providers missed the actual diagnosis.
  • Ultimately, a newly graduated physician finally tested for autoantibodies and confirmed type 1 diabetes (GAD65 positive).

3. Life with Type 1 Diabetes and Relationships

• Motherhood:
  • Robin had five biological daughters, and after various marriages/partnerships, is a stepmom in a blended family of seven girls.
    • Funny aside:

      “With seven, you got a broke bestie every day of the week. If you need to go to Starbucks every day, nobody’s gonna tell you no.” – Robin [13:41]

• First Marriage:
  • Ten-year marriage ended due to husband’s late-onset bipolar disorder. His illness led to neglect, cheating, and, devastatingly, use of her diabetes as a tool for abuse.
    • Chilling detail:

      “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.” – Robin [24:39]

• Second Marriage:
  • Robin fled for safety and remarried, but her second husband struggled with severe alcoholism, infidelity, and emotional/physical abuse.
  • He eventually asked Robin to leave when her lab tests suggested kidney failure:
    • Notable quote:

      “Yeah, I don’t want to be with someone sick. You need to leave.” – Robin [37:51]

4. Resilience, Leaving Abuse & Turning Points

• Motherhood Remains Central:
  • Despite trauma, Robin remained committed to her children and their well-being.
• Decreasing Kidney Function – Then a Reprieve:
  • After a period of declining kidney function (GFR under 40), her kidney health returned to normal after leaving her ex-husband. Robin speculates this might have been “her kidneys telling her to leave.”
• Rebuilding Life and Seeking Medical Advances:
  • Robin builds a new life with her now-fiancé, Steve, describing their friendship-turned-romance as her first relationship built on genuine personal choice rather than escape:

    “This is my best friend. We stay up late at night talking.” – Robin [42:30]

5. The Islet Cell/Transplant Chapter — "Second Chances"

• Referral and Research Entry:
  • Her long-time endocrinologist suggests she might be a candidate for a pancreas or islet cell transplant, referring her (loosely) to Dr. Piotr Witkowski at University of Chicago, a leader in islet cell transplantation.
• Cernova Clinical Trial (Phase II — Islet Cells in Abdominal Pouches):
  • Undergoes rigorous testing and becomes eligible. Phase II offers less risk and focuses on efficacy.
  • Pouches (resembling hernia meshes) are implanted in the abdomen to house islet cells from donors, with hopes they'll secrete insulin.
  • Post-transplant, her blood sugars stabilize: highs dramatically reduced, no more dangerous lows.
• Setback and Success:
  • After a bout of pneumonia and sepsis, anti-rejection medications had to be reduced, resulting in rejection of the initial islet cell batch.
  • October 9, 2024: Receives a direct portal vein liver islet cell transplant.

    “I woke up not diabetic. That was wild.” – Robin [55:54]

• Aftercare & Life as Non-Diabetic:
  • Now almost a year into her islet cell transplant, Robin takes minimal immunosuppression (monthly IV of Belatacept, low-dose Tacrolimus).
  • Her A1C is currently 5.1; she’s taken no insulin since the procedure.
    • Quote:

      “Sleeping through the night, not worrying my kids were going to find me dead in the morning – that’s what changed my life.” – Robin [57:01]

  • Continued self-monitoring (still wears Dexcom) reflects lingering anxiety from years of diabetes.

6. Reflections and Realities of Transplant Life

• The Realities of the ‘Cure’:

  • The transplant is transformative but not a “miracle cure”: immune suppression has risks, there’s still worry of graft failure, and ongoing vigilance is required.
    • Quote:

      “It’s not an end-all, be-all, but I would do it a thousand times over.” – Robin [72:07]

  • If the islet cells eventually fail (as sometimes happens), she’ll “just be diabetic again,” as with other failed organ grafts.

• Daily Impact:

  • Mentally, the biggest change is freedom from life-threatening lows and constant calculations.
    • Quote:

      “Do I want to spend my day fighting these highs and lows? … That kind of stuff has been…life altering.” – Robin [58:29]

• Gratitude and Moving Forward:

  • Robin expresses immense gratitude for the care at University of Chicago and for “her win from the universe” after years of trauma.

    “I feel like it’s more of a fate situation. … Maybe this is the blessing I get from dealing with those two ex-husbands.” – Robin [74:18]

  • She’s remarrying, working in a supportive job, and remains vigilant about her health and that of her children.

Notable Quotes & Memorable Moments (with Timestamps)

• On the trauma of being misdiagnosed:

  “It didn't matter because I was so scarred by this. I never got another HIV test until my fifth kid was born, and they wouldn't give me my child until I took it.” – Robin [08:04]

• On dangerous management and feeling medically invisible:

  “My sugar was super high. ... I was passing out.” – Robin [11:04]
  “They kept telling me…maybe it is type two, I don't know.” – Robin [16:27]

• On diabetes and shame:

  “I just couldn’t fathom attaching these things to me... I thought the pump was really scary.” – Robin [19:49]

• Re: abusive ex manipulating her diabetes:

  “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.” – Robin [24:39]

• On being asked to leave due to illness:

  “Yeah, I don’t want to be with someone sick. You need to leave.” – Robin [37:51]

• On awakening non-diabetic after islet cell transplantation:

  “I woke up not diabetic. That was wild.” – Robin [55:54]

• Robin’s perspective on post-diabetes life:

  “Everyone always asks you, what are you going to eat? … What I cared about was…not worrying that my kids were going to find me dead in the morning.” – Robin [57:01]

• On the anxiety that remains:

  “I spent 18 years diabetic and there’s a lot of anxiety that surrounds that…What if it comes back?” – Robin [71:16]

• On finally feeling like she got her “win”:

  “I do feel like the universe owed you a win. That’s for sure.” – Scott [74:33]

Important Timestamps

• Diagnosis Confusion & HIV Scare: [02:47]–[09:29]
• Pregnancy, Diabetes Mistreatment: [10:05]–[12:17]
• Motherhood, Marriage 1 and Trauma: [13:35]–[25:37]
• Marriage 2, Abuse, Leaving, and Kidney Function Crisis: [27:25]–[40:33]
• Starting Over and the Islet Cell Research Entry: [43:10]–[45:45]
• Cernova Trial, Complications, and Portal Transplant: [47:40]–[55:54]
• Living Post-Transplant – Wins and Ongoing Realities: [56:00]–[73:28]
• Endings, Gratitude, and Hope for the Future: [74:14]–[75:13]

Final Thoughts

Robin’s journey is equal parts harrowing and hopeful—a testament both to the failures and redemptions of medicine, the deep and tangled effects of chronic illness on personal relationships, and the disruptive promise of emerging diabetes technology. Her story resonates as a message of survival, informed self-advocacy, and the potential literal "second chances" modern science may offer people with type 1 diabetes. The episode’s open, raw, sometimes humorous dialogue makes her lessons especially accessible for those struggling not just with diabetes, but with being “seen” as a whole person.

For listeners:
If you want to learn more about islet cell transplantation or Robin’s doctors, check out Dr. Piotr Witkowski at University of Chicago Medicine.

Host’s signoff:

“I do feel like the universe owed you a win. That's for sure.” – Scott [74:33]

[End of summary]