This Thing Called Life

EP 94: Uniting for Hope: The Merger Transforming Organ, Eye and Tissue Donation

"Uniting for Hope: The Merger Transforming Organ, Eye and Tissue Donation”

We're thrilled to be back after our summer break, kicking off with exciting news about a transformative merger aimed at enhancing access to life-saving transplants. In this episode, hosts Andi Johnson, Julie Bergin, and Barry Massa delve into the merger between Kentucky Organ Donor Affiliates (KODA) and LifeCenter Organ Donor Network. Both organizations have a rich history of excellence in organ donation advocacy, and together they will rebrand as “Network for Hope.” This partnership will harness their combined strengths to bolster advocacy and community outreach efforts.

Join us as Julie and Barry share their inspiring personal journeys and reveal how their leadership has shaped this merger, paving the way for a brighter future for organ recipients in need of support. Don’t miss it!

Episode Highlights:

• Andi Johnson introduces guests Julie Bergin and Barry Massa and the upcoming merger of KODA and LifeCenter.
• Barry explains the merger journey, starting with their initial meetings at airports heading to national conferences, and the proximity of each organization.
• The conversation about the future of organ procurement organizations eventually led to discussions about merging the two organizations.
• The boards of both organizations were supportive of the merger.
• Julie shares her experience as a new leader in the industry and the support she received from Barry.
• Julie highlights the synergies between the two organizations, even before the merger conversation began.
• Barry discusses the smaller size of LifeCenter compared to other organ procurement organizations and the potential for both organizations to flourish together.
• Andi asks about the challenges faced during the merger process.
• Barry discusses the unique nature of organ procurement organizations and the need to work through nuances.
• Julie talks about the challenge of change and the importance of reassuring staff that the changes are for the betterment of the mission.
• Andi asks about the meaning of "Network for Hope" and its significance.
• Julie explains the importance of the word "network" in "Network for Hope," highlighting the collaborative nature of the mission.
• Barry adds that the name "hope" is crucial, as it represents the hope brought to donor families and recipients.
• Andi asks what advice Barry and Julie have for other OPO’s who are aiming for the same goal of merging.
• Barry says it is important to pick the right partner.
• The guests share their own experiences about some of the donors who have benefited from the gift of donation.
• Both Barry and Julie highlight the importance of community engagement and meeting people where they are.
• Julie brings up the special team that supports donor families.
• She also stresses the importance of one-to-one connections and providing resources for staff to better connect with families.
• Julie shares a personal story.
• Barry discusses the importance of providing emotional support.
• Resilience is a leader's responsibility and emotional support is crucial for staff to continue to work effectively.

3 Key Points:

1. Andi Johnson and guests Julie Bergin and Barry Massa discussed the merger between Kentucky Organ Donor Affiliates and LifeCenter Organ Donor Network.
2. Barry and Julie discuss the unique nature of organ procurement organizations and the need to work through nuances. They also talk about the challenge of change and the importance of reassuring staff that the changes are for the betterment of the mission.
3. They (Barry & Julie) express optimism about the future of Network for Hope and the importance of everyone working together to achieve their goals.

 

Tweetable Quotes:

1. “Barry was somebody who I was able to lean on as a new leader in this industry…” - Julie Bergin
2. “So I think we realized that there was synergies there, even before the conversation turned to to merge our organization.” - Julie Bergin
3. “We see an opportunity to really do things better…” - Julie Bergin
4. “None of us do everything exactly the same…” - Barry Massa
5. “Change in general is really hard for people, and our staff have had to deal with constant change, or the assumption that it's going to change, that has been a huge challenge, helping to inform them, reassure them, guide them.” - Julie Bergin
6. “I think that's the thing that people probably fear most, is losing that culture that each had. And yeah, it's going to change a little bit, but it's going to be better in the long run, right?” - Barry Massa
7. “Our whole job is to come to where they are, you know, see what their needs are, and to work with them to to allow donation to happen and still be respectful and mindful of the needs that they have as individuals.” - Julie Bergin

Resources:

https://getoffthelist.org/

https://lifepassiton.org/

https://lifepassiton.org/board-of-directors-leadership/

https://www.facebook.com/LifeCenterOH

https://www.youtube.com/user/LifeCenterOH

https://aopo.org/

This Thing Called Life Summer Hiatus: Keep up the spirit of compassion even in our absence!

This Thing Called Life Podcast will be on a summer hiatus returning this fall.  The essence of our mission remains. When we return, you can expect more powerful organ, eye, and tissue donation stories from the donors, recipients, families, and frontline healthcare workers.

While we're on this break, if you or someone you know is seeking information about organ, eye, and tissue donation, I strongly encourage you to visit lifepassiton.org. It’s a rich source of resources, stories, and opportunities for you to make a difference.

Remember, every act of giving, no matter how small, has the potential to change a life. Even in our absence, let's continue to spread the word, encourage others to register as donors, and keep the spirit of "This Thing Called Life" alive and thriving.

 

Thank you for your unwavering support, understanding, and compassion for us and our guests throughout this journey.

Until we meet again, take care of yourselves and each other.

EP 93: The Family Genetics that impacted the Liver health of Tony Burdette

Episode 93: Family Genetics That Lead To The Need For a Liver Transplant For Tony Burdette

 

On this episode of This Thing Called Life, Andi will speak with Mr. Tony Burdette, who will discuss his involvement with organ donation. Tony's life was saved in August 2019 via a liver transplant. His father passed down a genetic disease called alpha-1 antitrypsin deficiency to him. He was diagnosed in the early 1990s, with symptoms including exhaustion and low platelet counts. Tune in for his great story.

 

Episode Highlights: 

• Tony had never given much thought to organ donation, but sometimes it takes a crisis to bring it to the forefront of your mind.
• Tony's father underwent a liver transplant in 1997, but it was a painful experience since, after 14 hours, the surgeons came out and told them that he probably wouldn't survive. But, happily, doctors were able to get it to work sufficiently, and he received a second transplant two days later. 
• The hereditary condition does not impact everyone. They can live perfectly well without it. However, something triggered Tony's liver in early 2019, and his liver began to fail rapidly.
• Tony had all the excess fluid in his body, common for people with liver failure. So, he had to have the procedure called a thoracentesis, and over seven months, he had to have that procedure done 52 times.
• Tony couldn’t keep having these procedures every other day. So at the University of Cincinnati Medical Center for evaluation at the Transplant clinic, he was put on the list rather quickly around the beginning of May and received his liver on August 3rd, 2019.
• It was a quick illness for Tony and a painful one, but thankfully his transplant and the surgery were very successful. He was discharged from the hospital just five days later without any complications.
• Tony has a brother. He obviously has the deficiency, but he hasn’t had any symptoms so far. He is under the care of a GI, and they are keeping close tabs on him.
• Both of Tony’s children have a deficiency as well, and they are under the care of the liver transplant team at children just out of precaution. The doctors check them every year and have liver scans done to keep a check on them and make sure everything is ok.
• About three weeks after Tony’s transplant, he received two letters in the mail from elementary-age girls who wrote him a letter and said that they just wanted to let him know that he had received their mother’s liver.
• Tony has studied music at the University of Cincinnati College-Conservatory, one of the greatest in the world, and it is such an honor to be accepted there.
• Tony is the artistic director of an organization called Aviva Voices Choral Organization. It’s an organization that he founded, and it provides high-quality community choirs for children, youth, and adults.
• The program’s cornerstone is the brand new work for a course and orchestra called the breath of life, and it was written actually before the pandemic.
• Often, being open with what you are going through can impact other people. When Tony was going through all this, we posted periodically about this on social media as encouragement for people.
• Tony encourages people to not be afraid no matter what you are going through in life. Be open, share, and find people that you can talk to and know that your story can impact people.

 

3 Key Points:

1. Alpha-1 antitrypsin is an enzyme and it is created in the liver. The deficiency is that the enzyme gets trapped in the liver and creates a deficiency in the lungs. But when that enzyme gets trapped in the liver, it can cause liver damage.
2. Tony has spent his whole career serving as a professional musician, singing professionally with opera and orchestras around the country, and doing a lot of conducting with choirs and teaching singing.
3. Tony’s concert’s date is Saturday, April 30th, the last day of the month and the last day of donating life month. The concert is taking place at Christ Church Cathedral, which is a huge, beautiful venue.

 

Tweetable Quotes:

• “The dichotomy of organ donation is that, a life has to be lost in order to give life, but it’s also a beautiful thing of sacrifice.” - Tony
• “You never know how donation and transplantation will work, but Tony thinks it’s probably healing in many ways for both the donor family and the recipient.” – Andi
• “One of our core values is to be able to use the power of music to shed light on important things, and when we started this organization, we said that we wanted to have at least one concert once a year.” – Tony
• “Creating a free concert is based on the theme of life, the celebration of life, and use it woven together with stories. And the interesting thing about it is to bring awareness and make people aware of the power of organ donation.” – Tony
• “We are a core organization, and we specialize in classical music. You don’t have to be affected by classical music or anything because there will be various music.” - Tony

 

Resources Mentioned:

• LifeCenter | Website | Facebook | Instagram | YouTube|  Twitter
• Andi Johnson  website |LinkedIn 
• Organ Donation Website
• https://www.vivavoices.net/about/
• https://www.facebook.com/tony.burdette.5

EP 92: Nuevo nombre, misma pasión por salvar vidas

This episode of TTCL will feature an interview with Julie Luebbers on La Mega.  The monthly interview will provide the Spanish Community with information about "Network For Hope" (New Name, formally Life Center, but the same passion for saving lives) and the incredible miracles that happen with Organ, Eye, and Tissue Donation.

EP 91: A Calling To Find A Kidney Donor For All In Need

A Calling To Find A Kidney Donor For All In Need

 

Darcy Gibson and Andy Johnson discuss the challenges faced by kidney transplant recipients and their families. In this episode they shared their experiences highlighting the importance of storytelling and education when raising awareness about kidney disease, emphasizing the impact of personal stories on building empathy and creating a sense of community. 

Episode Highlights:

• Andi Johnson introduces Darci Gibson and the non-profit organization “Off The List”.
• “Off the List” aims to support individuals on the kidney transplant list and their families through their journey of waiting for a kidney and provide them with tools and resources to help them share their stories to find donors
• Darci shares what motivated her to start this non-profit and the passion behind the project.
• Darci tells us that her father needed a Kidney transplant, so she leveraged her background in Marketing to share her family story and get the word out about his need.
• Andi shares the importance of taking action and control over one's health, particularly for those with kidney disease or type 2 diabetes.
• Darci highlights the need for creating awareness and conversations around these conditions, as people often accept them as their fate without realizing they can take action to prevent or manage them.
• Darci shares an "aha" moment about the number of young people calling for kidney transplants, highlighting the need for early education and resource sharing.
• Darci offers encouragement to frustrated dialysis patients, emphasizing hope and support from others, including the possibility of finding a living donor.
• Andi asks how many families are “Off The List” helping now, and Darcy shares that they are currently working with 80 families.
• For those who want to contribute, the easiest way would be to go to their website https://getoffthelist.org/ 
• There are programs through the National Kidney Registry where you can donate a kidney. It's called their advanced Donation Program, and you can designate up to five people in your family should they ever need an organ donation.

 

3 Key Points:

1. Darci Gibson tells us about their non-profit organization called ‘Off The List’ and shares how she was pushed into that journey by her own experiences.
2. She also highlights the importance of early education for the next generation to help prevent kidney disease and to have the strength to believe that they could still take steps to manage it.
3. Darci offers words of encouragement to a frustrated dialysis patient, emphasizing hope and support from others, including the possibility of finding a living donor.

Tweetable Quotes:

• “... You have to share personal information. And that's hard to do, as humans, it's hard to ask people for help. And so I felt like there was a gap there that we could help fill and partner with the transplant centers and dialysis and nephrology to be able to just really dig in and personally with families through that and give them the tools.” - Darci Gibson
• “We just want them to know that we're here.” - Darci Gibson
• “And it's interesting how when I look back now, all of those things, was preparing me to do this. I mean, there was a reason and a purpose and that's why God was preparing me for this work.” - Darci Gibson

Resources:

https://getoffthelist.org/

https://lifepassiton.org/

https://lifepassiton.org/board-of-directors-leadership/

https://www.facebook.com/LifeCenterOH

https://www.youtube.com/user/LifeCenterOH

https://aopo.org/

EP 90: A Wife's Incredible Gift Of Life For Her Husband

In this episode of This Thing Called Life, Andi talks with Marty and Bonnie Garneret. Bonnie is not only Marty’s wife but also his kidney champion.  Marty and his wife have been married for 42 years this month, and he says that he married an angel without wings.  They share their special journey and you are not going to want to miss it!

EP 89: April Is National Donate Life Month - Creating Awareness Of The Need To Register For Organ, Eye and Tissue Donation

Community Heroes is a special extension of This Thing Called Life’s podcast. In this series, we talk to community leaders, share important information about organ and tissue donation, and honor those who have been instrumental in saving lives through the gift of donation.  In this episode, we talk with Lincoln Ware from WDBZ the Buzz of Cincinnati talk station.

 

 

Resources:
https://lifepassiton.org/
https://www.facebook.com/LifeCenterOH
Life Center Phone # 513-558-5555

EP 88: Azul y Verde; Mes de Donar Vida (Green and Blue; Donate Life Month

This episode of TTCL will feature an interview with Julie Luebbers on La Mega.  The monthly interview will provide the Spanish Community with information about Life Center and the incredible miracles that happen with Organ, Eye, and Tissue Donation.

EP 87: Coach Darryn Chenault's Kidney Transplant Journey

Coach Darryn Chenault's Kidney Transplant Journey

 

It's April so it's time to celebrate the tremendous generosity of those who have saved and healed others as organ eye and tissue donors. Today we introduce Coach Darryn Chenault, to share his Transplant Journey and discuss how he broke the cycle of not communicating about Kidney Disease in his family. 

Episode Highlights:

• Andi introduces Coach Darryn Chenault and how she heard his story on TV 
• Darryn shares with us his love for being on the field coaching and how one day there was a change in how his body responded to high-energy activities.
• Darryn explains how he thought it was a hereditary disease, ignoring the risk and thinking he was young and healthy.  Darryn eventually figured he would have to take meds like he had witnessed with his dad, but when he got COVID, it took his Kidney Issues from Stage 2 to Stage 5.
• Darryn shares that since he was “That Guy” a police officer, a hero to his family, and someone who works out every morning, he didn’t want to feel like he was not in control.
• Going through the struggles of his disease, Darryn had a hard time adjusting to not being “Out and about”, that’s when he decided that he needed a Kidney.
• Darryn shared how he was saved by a friend who advertised to the community that he needed a kidney transplant.
• Darryn’s nephew, Arryn, called and said he was a match and wanted to donate his kidney.
• Darryn’s family encouraged him to receive this gift.
• Andi and Darryn discuss the issue that Black families have with higher rates of kidney disease and diabetes, which can lead to the need for dialysis and transplants.
• Darryn suggests a lack of education, on the topic, prevents black families from stepping up at the same rate to be living donors.
• Darryn's actual birthday is April 9 but now he tells people that his new birthday is June 6, his Transplant Date, because he got more time.
• Darryn and Arryn have a unique bond after sharing this kidney transplant experience, inspiring others at family gatherings.
• Darryn extends gratitude for his ability to spend time with family and enjoy activities they couldn't do before, while also acknowledging the importance of self-care and education for transplant recipients.

3 Key Points:

1. Coach Darryn was always there for his players and the community, he was someone everyone looked up to. Being on the receiving side was an adjustment requiring him to have new routines and acceptance of the gift of life.
2. Coach Darryn shares his wonderful gift of receiving the Kidney Transplant from his nephew Arryn on June 6, and how their bond got even stronger and inspired other people in their family.
3. Darryn shares gratitude for being able to spend time with family and enjoy activities they couldn't do before, while also acknowledging the importance of self-care and education for transplant recipients.

Tweetable Quotes:

• “ Because here I am thinking I'm the guy like I work out in the morning. Good kids are looking up to me. I'm a police officer. I'm a superhero to my kids and my family. so to speak. I just wanted to be that guy.” - Darryn Chenault
• “And that's what I learned throughout this whole process that I needed to lean on my family.“ - Darryn Chenault
• “I mean, it was it was a tough ride, but we did it.” - Darryn Chenault
• “Black families have higher rates of kidney disease and diabetes, which many times lead to needing dialysis and a transplant yet we do not as a community… as a race, we don't step up at the same rate to be living donors as white people” - Andi Johnson
• "We gotta open up our heart and let them help us." - Darryn Johnson

Resources:

https://lifepassiton.org/

https://lifepassiton.org/board-of-directors-leadership/

https://www.facebook.com/LifeCenterOH

https://www.youtube.com/user/LifeCenterOH

https://aopo.org/

EP 86: World Kidney Day Reminds Us How We Can Help Others In Need.

Community Heroes is a special extension of This Thing Called Life’s podcast. In this series, we talk to community leaders, share important information about organ and tissue donation, and honor those who have been instrumental in saving lives through the gift of donation.  In this episode, we talk with Don Juan Fasho from 100.3 Cincy's R&B station.

 

 

Resources:
https://lifepassiton.org/
https://www.facebook.com/LifeCenterOH
Life Center Phone # 513-558-5555