This Thing Called Life

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

Tuesday Sep 09, 2025

EP 125: Mes de la Herencia Hispana: Honrando el Pasado, Inspirando el Futuro (Hispanic Heritage Month: Honoring the Past, Inspiring the Future)

Tuesday Sep 09, 2025

This episode of TTCL will feature an interview with Luis Santiago from NFH on La Mega.
This monthly interview will inform the Spanish Community about Network For Hope and the incredible miracles that happen with Organ, Tissue, and Eye Donation.

Resources:
https://getoffthelist.org/
https://www.networkforhope.org/
https://www.networkforhope.org/about-us/
https://www.facebook.com/NetworkForHopeOPO
https://aopo.org/

Tuesday Sep 02, 2025

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

Tuesday Sep 02, 2025

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

Alport Syndrome Impacts More Than Just the Kidneys. 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.
Living Donation Changes Lives. 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.
The Emotional Toll Is Real, But So Is Resilience. 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:

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

Tuesday Aug 26, 2025

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

Tuesday Aug 26, 2025

"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.

✨ Episode Highlights

Andi introduces Markeyah Lewis and invites her to reflect on how they first met four years ago, during her battle with lupus.
Markeyah shares her inspiring story of resilience and hope amid life-altering circumstances.
She describes undergoing hemodialysis during her senior year of college.
Her mother, although not a direct donor match, was determined to help.
Markeyah explains how Advanced Kidney Donation allowed her mother to donate to another person—making Markeyah a priority on the transplant list.
In 2022, her mother donated a kidney to a stranger named Charlie, with whom they still keep in touch.
Andi and Markeyah discuss the importance of honoring the gift of life after a transplant.
Markeyah offers heartfelt advice for those battling chronic illness, emphasizing the importance of a strong support system.
They explore the role of faith in navigating health struggles and finding purpose.
Markeyah shares her deep gratitude for her mother’s selfless act.
She opens up about her pregnancy journey, which was unexpectedly smooth despite the risks associated with lupus and kidney disease.
Markeyah also details her mother’s donation journey and her current health.
She expresses thanks to their medical team and looks forward to becoming an occupational therapist.
The episode concludes with Markeyah reflecting on her first Mother’s Day.

📝 Key Takeaways

Markeyah's story sheds light on the power of organ donation and the impact of Advanced Kidney Donation. Her mother’s courage to donate a kidney to a stranger not only saved a life but also gave Markeyah a new beginning.
Despite the challenges of chronic illness, Markeyah’s journey illustrates the importance of faith, community, and perseverance.
Her experience of motherhood and her educational pursuits underscore the promise of living life fully post-transplant.

📢 Tweetable Quotes

“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.”

Markeyah Lewis

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

Markeyah Lewis

“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.”

Markeyah Lewis

“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.”

Markeyah Lewis

Resources:

Wednesday Aug 20, 2025

EP 123: Mes Nacional de Concientización sobre la Donación de Minorías

Wednesday Aug 20, 2025

Tuesday Aug 05, 2025

EP 122: "The Gift of Life: A Conversation with Dr. Alex Ancheta, Transplant Surgeon"

Tuesday Aug 05, 2025

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

Meet Dr. Alex Ancheta. Andi welcomes Dr. Ancheta, a transplant surgeon at UK HealthCare's Transplant Center, who shares his career journey from EMT to physician, and what drew him into transplant surgery.
The Rewards and Challenges of Transplant Surgery. Dr. Ancheta opens up about the emotional rewards of helping save lives, while also reflecting on the ethical and logistical challenges of organ donation—such as finding suitable matches and ensuring fair allocation.
The Role of AI and Data. He discusses how artificial intelligence and advanced data systems are helping improve organ allocation and streamline transplant logistics.
Patient Stories and Lifelong Impact. Andi and Dr. Ancheta discuss how patients’ courage and gratitude inspire their continued work. Dr. Ancheta shares that his responsibility doesn’t end after surgery—it continues as patients live on with their new organs.
Restoring Faith in Humanity. Dr. Ancheta reflects on the power of witnessing anonymous organ donation, saying that moments like these reaffirm his belief in the goodness of people.
Clarifying Misconceptions Around Registration. He debunks a common myth: registering as an organ donor doesn’t guarantee donation. Only a small percentage of people become eligible at the time of death, but registering still matters.
Addressing Mistrust and Misconceptions. Dr. Ancheta talks about the mistrust in underserved communities, and how open dialogue, education, and firsthand stories from organ recipients can begin to rebuild understanding and hope.
Breaking Down Barriers to Transplant Evaluation. Together, Andi and Dr. Ancheta discuss the importance of making transplant evaluation more accessible, including the role of support groups and education in guiding patients through the process.
The Power of Living Donation. Dr. Ancheta shares how he encourages kidney patients to consider living donation as a life-extending option, and highlights the incredible stories of connection between donors and recipients.
A Memorable Reunion. Witnessing a transplant recipient meet the donor’s family—an emotional and unforgettable exchange that shows the far-reaching impact of one person’s decision.
Looking Ahead. The episode wraps with a discussion on how technology continues to transform organ transplant practices, from evaluation to recovery.

📝 Key Takeaways

Transplant Surgery Is More Than a Procedure—It’s a Lifelong Commitment. Dr. Ancheta emphasizes that his role extends far beyond the operating room. The relationships with patients and their stories continue long after surgery, making the work deeply personal and meaningful.
Misinformation Is One of the Biggest Barriers to Donation. Many people misunderstand what it means to register as an organ donor. Dr. Ancheta advocates for open, honest education and cultural sensitivity, especially in underserved communities.
Technology Is Advancing the Future of Transplant Care. AI and data analytics are helping make the organ allocation process more efficient and equitable, bringing hope to patients waiting for life-saving transplants.

📢 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:

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

Tuesday Jul 22, 2025

EP 121: Preguntas Comunes (Common Questions)

Tuesday Jul 22, 2025

Tuesday Jul 08, 2025

EP 120: The Dual Role of Advocacy in Organ Donation with Hannah Boylan, Family Support Supervisor at Network for Hope

Tuesday Jul 08, 2025

🎙️ 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

Introducing Hannah Boylan: Hannah shares how she discovered her calling during a clinical ethics lecture and transitioned into organ donation work during the height of the pandemic.

The Power of Bioethics in Real Life: Her background in Bioethics allows her to step back, analyze difficult situations, and support families with clarity and compassion.

Understanding Dual Advocacy: Hannah explains the critical need to balance the needs of donor families and patients on the transplant waitlist—both of whom deserve care, attention, and respect.

Writing About Moral Distress in the Field: Hannah discusses her published work addressing the emotional toll and moral complexities faced by those in organ procurement—an area often left unspoken in bioethics literature.

Behind-the-Scenes at Network for Hope: Andi and Hannah talk about the collaboration between organ procurement organizations and hospitals, how and when Family Support teams get called in, and the sensitive timing involved.

Compassionate Keepsakes for Donor Families: From teddy bears and heartbeat recordings to Medals of Honor, Hannah shares how these items help families process their grief while celebrating the heroic choice of donation.

Honor Walks: Some hospitals line the halls with electric candles and staff members during an Honor Walk, paying silent tribute as the donor is moved toward the operating room—a deeply moving moment of collective respect.

Misinformation and Myths About Donation: Hannah discusses the widespread misunderstandings about organ donation and urges the importance of education and transparency in order to empower families to make informed decisions.

📝 Key Takeaways

Dual Advocacy Is Critical: Organ donation professionals must walk a fine line between supporting grieving donor families and honoring the urgent needs of those on the waitlist. Both require empathy, ethics, and balance.
Memory-Making Matters: Keepsakes like heartbeat recordings, Medals of Honor, and Honor Walks offer comfort and help transform a painful moment into a lasting, meaningful tribute.
Education Is Empowerment: Combating myths and misinformation ensures that families can make donation decisions rooted in truth, compassion, and clarity, not fear or misunderstanding.

📢 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:

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

Tuesday Jun 24, 2025

EP 119: "Bridging the Gap: The Power of Organ Donation in Kentucky"

Tuesday Jun 24, 2025

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 tranplants, 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

Andi Johnson welcomes guest Shelley Snyder, who shares the mission and outreach of Donate Life Kentucky Trust.
Shelley explains how the organization supports every aspect of the donation journey:
➤ Those waiting for transplants
➤ Recipients of life-saving organs
➤ Families of heroic donors
She proudly highlights partnerships with Network for Hope and the Kentucky Transportation Cabinet, with Commissioner Matt Cole serving as board chair.
Shelley details key programs:

Scholarships for youth
Support for children on transplant waiting lists
Financial aid for transplant recipients and donor families

The Transplant Patient Assistance Fund (est. 2001) has provided over $800,000 in care-related expenses.
The Donor Family Support Program has distributed approximately $100,000 in aid, covering needs such as hotel stays, meals, and living essentials.
Shelley clarifies the distinction between the work of Organ Procurement Organizations (OPOs) and the Trust’s role in wraparound support and community outreach.
Her personal story includes:

The sudden loss of her father, Dennis Evren, whose tissue donation restored sight and helped someone walk.
Her mother’s successful surgery was thanks to donated tissue.

Shelley shares touching stories, including:

A family who lost a daughter and the life-changing impact of her donation.
Jonathan is a transplant recipient, turned powerful advocate.

She emphasizes how circuit court clerks were instrumental in founding the Trust, and how public speaking, community engagement, and media partnerships fuel the mission.
The impact of media portrayals, such as Grey’s Anatomy and The Pit, on raising awareness is explored.
Shelley highlights multiple ways people and businesses can support:

Sponsorships
Third-party fundraising
One-time and recurring donations

She also introduces the “Gift of Life Stories” section on the website, a collection of inspiring personal testimonies.
The episode closes with a heartfelt encouragement to register as an organ donor and get involved in this life-giving mission.

📝 Key Takeaways

The Donate Life Kentucky Trust supports not only organ donation education but also provides real-life aid to those on the transplant journey.
Through philanthropic support, the Trust has helped provide over $900,000 in aid across programs for recipients and donor families.
Shelley’s personal experience—from the loss of her father to her mother’s surgery—deeply informs her work and passion.
The organization was founded by circuit court clerks and continues to rely on that community involvement to grow its reach.
You can make a difference by registering as a donor, sharing the message, or supporting the organization financially.

📢 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.”

- Shelley Snyder

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

- Shelley Snyder

“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.”

- Shelley Snyder

“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. “

- Andi Johnson

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

- Shelley Snyder

“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.”

- Shelley Snyder

“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.”

- Shelley Snyder

“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.”

- Shelley Snyder

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

- Shelley Snyder

Resources: