This episode of TTCL will feature an interview with Luis Santiago from NFH on La Mega.

RegisterMe.org/NetworkforHope

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

📝 Key Takeaways

📢 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

"Full Circle: Interview with Markeyah Lewis on Life, Lupus, and the Gift of a Kidney"

Markeyah Lewis was diagnosed with Lupus, leading to early kidney failure. When her mother wasn’t a direct transplant match, they turned to Advanced Kidney Donation—a life-changing decision that helped Markeyah receive her transplant in 2022. Now a mother and soon-to-be Doctor of Occupational Therapy, Markeyah shares her powerful story of resilience, motherhood, and the miracle of second chances.

“I believe it's called advanced kidney donation, where she is not able to donate to me, but she is able to donate to someone else who is in need of a transplant, and that essentially makes me a priority.”

“So your mom affectionately named her kidney that she donated brown sugar. Yes. So brown sugar is doing well with Charlie.” 

“And so I think that is like the biggest promise that I can keep, again, to my donor and their family and myself, is just to continue to live my life fully.”

“It was often hard for me to imagine what my life would be like, not on dialysis or, you know, not battling a chronic illness. And it may seem simple, but really truly, just don't give up.”

Resources:

https://getoffthelist.org/

https://www.networkforhope.org/

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

https://www.facebook.com/NetworkForHopeOPO

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

https://aopo.org/

This episode of TTCL will feature an interview with Luis Santiago from NFH on La Mega.

RegisterMe.org/NetworkforHope

Title: "The Gift of Life: A Conversation with Dr. Alex Ancheta, Transplant Surgeon"

🎙️ Episode Summary

In this inspiring episode, we sit down with Dr. Alex Ancheta, a transplant surgeon at the UK HealthCare Transplant Center. Dr. Ancheta shares his journey into the world of transplant surgery, from his educational path to the personal motivations that drew him to this life-saving field. He opens up about the emotional and professional drive behind his work, as well as the vital importance of clear and compassionate communication, especially when addressing generational concerns surrounding organ donation. Join us for a powerful discussion on what it truly means to give, receive, and advocate for the gift of life.

✨ Episode Highlights

📝 Key Takeaways

📢 Tweetable Quotes

“People who have organ failure from different causes, and being able to see the transformation that you can make the difference in their lives and how much, how much it changes them.”- Dr. Ancheta

“I think transplant as a specialty is a fairly young specialty, and, you know, dealing with the immune system compatibility, there's, you know, such an incredibly complex field that there's still, honestly, a lot to discover.” - Dr. Ancheta

“I think AI can be very useful in helping us to analyze the, you know, the outcomes data and the allocation processes. So I think that's going to be one of the biggest roles that AI is going to help us in determining how we can always, how we can improve the way that we're allocating organs, so how we can improve the way that we're assessing donors.” - Dr. Ancheta

“So it's very gratifying to see you know someone who's had a transplant 10 years ago, and they tell you about their life and the family that they've started…” - Dr. Ancheta

“It requires, you know, a lot of stars to align to be able to donate.” -  Dr. Ancheta

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

This episode of TTCL will feature an interview with Luis Santiago from NFH on La Mega.

RegisterMe.org/NetworkforHope

🎙️ Episode Summary

In this heartfelt and eye-opening episode, host Andi Johnson sits down with Hannah Boylan, a Family Support Supervisor at Network for Hope, to explore the delicate and vital world of organ donation. Hannah offers a behind-the-scenes look at how her team supports families during one of the most difficult moments of their lives—navigating the decision to donate a loved one’s organs.

With a background in bioethics, Hannah shares how she became involved in this work during the COVID-19 pandemic and how her training helps her think clearly through emotionally complex situations. The episode dives deep into the concept of dual advocacy—supporting both donor families and recipients—and emphasizes the importance of accurate information, compassionate care, and honoring each donor’s legacy.

Listeners will gain a new appreciation for the unseen emotional and ethical work that goes into organ donation and walk away with a better understanding of how memory-making items like heartbeat recordings, Medals of Honor, and Honor Walks play a crucial role in healing and closure.

✨ Episode Highlights

📝 Key Takeaways

📢 Tweetable Quotes

“ It's an honor to work with people who're having the worst day of their life, right? And they're able to step away from that grief for a moment, and they're thinking about those people on the wait list…” - Hannah Boylan

“And I think to do this work, you have to be thinking about the recipients on the wait list, but you also have to know that you're providing that comfort to the donor families that you're working with.” - Hannah Boylan

“I think also, when I go into this ethics training, that it changes my mindset. I can separate myself from the situation and look more objectively. If I break down the problems and think about ethical principles that I've been trained in, and that helps me, even if it doesn't give me a clear answer, it lets me think about things in a little bit of a different way, which I find really helpful.” - Hannah Boylan

“Donation is so rare, right? We think that's important to highlight, I think that's something that people don't realize.” - Hannah Boylan and Andi Johnson

“I think donation can be scary. It's a big decision. It's a decision that can't be taken lightly. Families deserve to make the decision that's best for them, but they deserve to have that right information.” - Hannah Boylan

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

Title: "Bridging the Gap: The Power of Organ Donation in Kentucky"

🎙️ Episode Summary

In this powerful episode, host Andi Johnson sits down with Shelley Snyder, Executive Director of Donate Life Kentucky Trust, to explore the life-changing impact of organ donation across the Bluegrass State. Together, they discuss how the organization supports those waiting for transplants, honors donor families—true heroes in the community—and works to educate Kentuckians on the critical importance of registering as organ donors. Shelley shares heartfelt stories and explains how Donate Life Kentucky fills the gaps in care, awareness, and advocacy, one life-saving conversation at a time.

✨ Episode Highlights

📝 Key Takeaways

📢 Tweetable Quotes

“Our real focus is on supporting all areas connected to donation and transplantation, so those who are on the waiting list, those who have received the precious gift of life and those incredible heroes and their families who gave.”

“I should say, and the registry is so key, as you know, to ensuring that lives are saved. “

“I've always said, If I ever win the lottery, all my money would go to helping these incredible, heroic donor families who have given the gift of life at the worst time in their lives.”

“I say that with the OPOs, because there's a clear distinction of what our role and responsibilities are. So it's just it's great to have that partnership with the trust. “

“I just, I love this mission so much. It's been a part of my life since I was 17 years old.” 

“His gift of tissue is going to help someone walk. And we learned later that he gave sight to a 22-year-old and a 29-year-old.” 

“People can be organ donors and save a life, and we need to get the word out. And so they started doing that through driver's license, accepting the $1 donations, and that went into a trust, and that's what our organization was founded on, and that was in 1992.”

“We find that public speaking is really, really impactful, because we are able to share the facts and talk directly to people and open the door.” 

“We rely on businesses and individuals to work with us to make all of these programs possible. And we have a wonderful team.”

Resources:

Donatelifeky.org

https://getoffthelist.org/

https://www.networkforhope.org/

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

https://www.facebook.com/NetworkForHopeOPO

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

https://aopo.org/

This episode of TTCL will feature an interview with Luis Santiago on La Mega.

Spreading Realistic Positivity: David Galbenski’s Mission to Champion Living Donation

When David Galbenski received a life-saving liver donation from his brother-in-law, it was more than a second chance—it was a call to action. In this powerful episode, David shares his personal journey from transplant recipient to national advocate for living donation. Discover how his gratitude turned into purpose through the creation of the Living Donor Awareness Games, a movement spreading hope, education, and inspiration across the country. Tune in to hear how one extraordinary act of generosity is now saving countless lives.

✨ Episode Highlights

📝 Key Takeaways

“Well, the Reds have been a tremendous partner in launching Living Donor Awareness games that we've been doing now for three or four years.”

“And so what we loved about that was baseball was this perfect vehicle, yes to allow living organ donation to come to life. And then here's the beauty of living organ donation yes tied to baseball, another great metaphor, the ultimate double play.”

“I really leaned in my faith on this journey…”

“So I call it Realistic positivity, right? Let's embrace life with everything, but let's make sure we're confronting the facts right, acronym head-on, right. But then doing it with optimism, absolutely, doing it with faith, doing it with a desire to say, when I get through this, I'm going to pay it forward.”

“And they surveyed 10s of 1000s of people to say what would be the biggest overall kind act that someone could do. The number one overall act of kindness, out of 1692 acts that they surveyed, was giving and becoming a living donor for a friend.”

Resources:

https://getoffthelist.org/

https://www.networkforhope.org/

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

https://www.facebook.com/NetworkForHopeOPO

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

https://aopo.org/