This Thing Called Life

EP 124: One Family, Three Transplant Journeys: Life with Alport Syndrome

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Title: One Family, Three Transplant Journeys: Life with Alport Syndrome

 

🎙️ Episode Summary

In this heartfelt episode of This Thing Called Life, host Andi Johnson speaks with Amanda and Hunter, a mother and son living with Alport Syndrome—a rare genetic disease that affects just 1 in 50,000 live births. Their story is one of resilience, family strength, and the life-changing power of organ donation.

Amanda and Hunter share their family’s long history of transplants and the challenges of living with this condition, which impacts not only the kidneys but also the ears and eyes, leading to hearing and vision loss over time. From Amanda’s first transplant on New Year’s Day 2015, to Hunter’s sudden kidney failure at age 20, to Caitlin’s emergent transplant journey—this episode paints an intimate picture of how one family continues to navigate illness, hope, and healing together.

Most importantly, Amanda and Hunter underscore the critical importance of organ donation and living donors, emphasizing how education and awareness can make a profound difference for families like theirs.

 

✨ Episode Highlights

  • Introducing the Guests: Andi welcomes Amanda and Hunter, who both live with the rare genetic disease Alport Syndrome.

  • What is Alport Syndrome?: Amanda explains that it affects type four collagen in the kidneys, also present in the ears and eyes, leading to kidney failure, hearing loss, and vision loss over time.

  • A Family History: Amanda recounts her lifelong connection to the disease, being diagnosed in infancy, and how her grandparents also faced kidney disease.

  • Amanda’s First Transplant: At age 31, on New Year’s Day 2015, Amanda received her first kidney transplant after traveling to Arkansas when a match was found through the University of Kentucky.

  • 10 Years of Health, Then Rejection: The transplant allowed her to live relatively healthy for a decade, until October of last year, when she was diagnosed with chronic rejection. Her kidney function has now dropped to 9%, and she is preparing for dialysis access surgery.

  • Hunter’s Journey: Diagnosed young, Hunter went into kidney failure suddenly at age 20. Now on hemodialysis, he shares the physical exhaustion and emotional toll of treatment while awaiting a kidney transplant.

  • Milestones Interrupted: Hunter turned 21 while on dialysis, reflecting on the difficulty of celebrating life milestones while facing health challenges.

  • Caitlin’s Emergent Case: Amanda’s daughter, Caitlin, experienced a different path, requiring an emergent ICU stay. She had a tunnel calf, placed her GFR, and got down to four or five before she started dialysis.

  • Facing Uncertainty: Hunter opens up about the mental and emotional strain of waiting for a transplant, but finds reassurance in his family’s shared experiences.

  • Searching for Hope: Amanda, Hunter, and Caitlin are currently seeking a living donor, while also remaining on the waiting list.

  • The Power of Living Donation: Amanda discusses how living donors have transformed her family’s story and recalls the touching moment she received a letter from her donor.

  • Holding on to Dreams: Hunter shares his hope to return to his passion for music, which has been put on hold due to his health.

  • Closing Gratitude: Andi thanks Amanda and Hunter for their openness and for shining a light on the life-saving importance of organ donation.

    •  

    📝 Key Takeaways

    1. Alport Syndrome Impacts More Than Just the Kidneys
      2. The disease affects collagen in the kidneys, ears, and eyes—causing kidney failure along with hearing and vision loss. Families living with Alport face a multifaceted battle that extends beyond dialysis and transplants.

    2. Living Donation Changes Lives
      3. Amanda and her family’s story highlights how living donors can provide not just organs, but hope, extra years of health, and renewed possibilities for families facing genetic diseases.

    3. The Emotional Toll Is Real, But So Is Resilience
      4. From Amanda’s transplant journey to Hunter’s daily dialysis struggles, the episode underscores both the emotional challenges of waiting for a transplant and the strength families draw from one another while navigating uncertainty.

       

      📢 Tweetable Quotes

       

      “Alport Syndrome is a relatively rare genetic disease. I think it affects my daughter has all the stats, like one in 50,000 live births, about 200,000 people across the United States. It affects the type four collagen in the kidney, which is also found in the ears and the eyes. So, along with deterioration of the kidneys, it also causes hearing loss, vision loss over time.” - Amanda 

       

      “So I got the call. We were getting ready to have dinner for New Year's Eve, and I got a call from UK (University of Kentucky) saying we have a match out of Arkansas. I went to the hospital by myself, and they did all of my testing, and then everything was perfect. Somehow it was kind of miraculous, and they did the transplant the next day.” - Amanda

       

      “I noticed kind of recurring symptoms…They did a biopsy at that point and showed signs of just chronic rejection, which the average lifespan is about 10 to 12 years for a kidney, so they really couldn't find a cause for it. They just said it was chronic.” - Amanda

       

      “Well, it was kind of just out of nowhere, when it first happened, when I first knew I was going into kidney failure. It was literally just no warning, in one day. It's like a switch flipped, and that was just the case.” - Hunter

       

      “It leaves you pretty drained… once you're off of it, the rest of the day, you're pretty much useless. It just saps everything out of you; you're not really left with much energy. So usually it's just getting off dialysis. If I have anything that needs to be attended to, I'll just do it real quick and then just go home and breathe, you know, fall asleep immediately.” - Hunter






      Resources:

      Donatelifeky.org

       

      https://getoffthelist.org/

      https://www.networkforhope.org/

      https://www.networkforhope.org/about-us/

      https://www.networkforhope.org/stories-of-hope/

      https://www.facebook.com/NetworkForHopeOPO

      https://www.youtube.com/@NetworkforHope.

      https://aopo.org/

      RegisterMe.org/NetworkforHope

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