This Thing Called Life

EP 100: Network For Hope Community Breakfast - An Annual Event Celebrating Those Impacted By, And Community Advocates For, Organ, Tissue & Eye 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://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/

EP 99: Community Heroes - Gratitude From Those Affected By Organ, Tissue, and Eye 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, Tissue, and Eye donation, and honor those who have been instrumental in saving lives through the gift of donation.

 

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/

EP 98: Breath of Hope: Navigating the double lung transplant journey

Welcome to today’s episode of This Thing Called Life, where we explore the evolving landscape of organ, tissue, and eye donation. Join us as we chat with Andi Johnson, featuring Jennie Wright, a double lung transplant recipient, and her daughter, Siri Imanin. 

Jennie, diagnosed with sarcoidosis and pulmonary hypertension, waited a year to be listed for a transplant and another two years to receive the lungs. She recounts the challenges, including antibiotic-resistant infections and the emotional toll on her family. Siri shares how her mother's journey influenced her music and activism, emphasizing the importance of organ donation education in the Black community. They discuss the need for proactive health awareness and the impact of supportive networks on their recovery.

 

Episode Highlights:

• Andi Johnson introduces the mother-daughter duo Jennie Wright and Siri Imani, and asks Jennie to share her transplant journey
• Jennie shared that she had sarcoidosis, and as a result, her lungs were severely damaged, which caused pulmonary hypertension. So before the donation, she had a backpack that had oxygen and a fanny pack that had a heart pump.
• It took a year to get Jennie listed and two years before she got her transplant
• Jennie recounts the emotional and physical challenges, including contracting antibiotic-resistant infections and the decision to postpone the transplant due to her condition.
• Andi asks about the support journey for both mother and daughter
• Siri, Jennie’s daughter answers that she was happy once everything was settled because she recalls the long period where her mother’s life felt limited and the journey they had to go through in organ donation.
• Andi asks Siri, who is an artist, creator, activist, & cultivator, how the journey influences her music and the work that she does from a creative standpoint.
• Siri answers that it influenced everything and that she grabs inspiration from her mother and grandmother in every way. Siri shares that when they first got the diagnosis, she documented and made music about it.
• Andi asks Siri to share her favorite memory with her grandmother
• Andi asks what they would like to share with others, particularly in the black community, after just living through this experience.
• Siri shares her personal journey of overcoming misinformation and distrust, emphasizing the need for education and awareness.
• Andi questions what they would like to say to their donor family.
• Jennie expresses her deep gratitude to the donor family for their selflessness and the opportunity to continue living.
• Jennie and Siri discuss the activities and experiences they can now enjoy, such as walking and attending events.

3 Key Points:

1. Jennie shared that she had sarcoidosis, and as a result, her lungs were severely damaged, which caused pulmonary hypertension. So before the donation, she had a backpack that had oxygen and a fanny pack that had a heart pump. It took a year to get Jennie listed and two years before she got her transplant because there were certain conditions to be met for her to get the transplant.
2. Siri, Jennie’s daughter recalls the long period where her mother’s life felt limited and the journey they had to go through in organ donation. Siri is also an artist, creator, activist, & cultivator, and she found inspiration in her mother’s journey.
3. Siri shares her personal journey of overcoming misinformation and distrust, emphasizing the need for education and awareness. The conversation touches on the historical context of distrust in the medical system within the Black community and the importance of updating that narrative.

Tweetable Quotes:

1. “...with that waiting process, the stars have to be perfectly aligned, because you have to be, to be at the top of the list, you got to be the sickest of the sick, right? But you can't be too sick.” - Andi Johnson
2. “My faith helped to sustain me, and I feel like God showed me a moment on the other side of this. And I just kind of held on to that.” - Jennie Wright
3. “I think a lot of our work with people experiencing homelessness just came from the understanding early that life could take you anywhere, no matter what type of person you are, no matter where you come from, you can place where you just need people.” - Siri Imani
4. “I was always planning on making sure, like, people knew who my mama was, people knew who my grandma was, and really remember because they made it clear who they were in their lifetimes.” - Siri Imani

 

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/

EP 97: ¡LifeCenter ahora es Network For Hope!

LifeCenter ahora es Network For Hope! (LifeCenter now is Network For Hope!)
This episode of TTCL will feature an interview with Julie Luebbers on La Mega.
This monthly interview will inform the Spanish Community about Network For Hope and
the incredible miracles that happen with Organ, Eye, and Tissue Donation.

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

EP 96: "Second Chances: A Teen's Journey from Cardiac Arrest to a New Heart"

In this heartfelt episode of This Thing Called Life Podcast, host Andi Johnson sits down with Mario Jarrett and his mother, Kesia, to discuss Mario's incredible journey following a cardiac arrest at just 16 years old. They share the challenges and miracles that shaped his need for a heart transplant, highlighting the unwavering love and support that surrounded him throughout this life-altering experience. Mario's story is a testament to resilience, faith, and the determination to embrace life fully. Join us as they delve into the power of hope and the importance of striving for personal growth every day. Don’t miss this inspiring conversation!

 

This episode is dedicated to Mario’s Heart Donor Amanda and her family!

Episode Highlights:

• Mario Jarrett shares what led to his need for a Heart Transplant. 
• Mario was a high school Athlete participating in Baseball, Football, and Track & Field.
• Mario’s cardiology team thought he suffered mini heart attacks over a period of time without knowing it.  Mario indicated he felt like he was just dehydrated.
• In May of 2021, while preparing for the state track and field competition, he went into cardiac arrest.
• Doctors told Mario and his family that he needed to have a heart transplant.
• Mario received a heart transplant at Children's Hospital in Cincinnati on July 26, 2021.
• Mario talks about how his Faith helped him get through his Health Crisis.
• Kesia Jarrett, Mario’s mom, shares her gratitude for the donor's family, health providers, pastoral family, and all the family and friends who were there for her family.
• Kesia reveals that Mario’s Doctors thought his health issues were stemming from Asthma but never expected it was his heart.
• Kesia remembered her spiritual nudge to seek a specialist for Mario.
• Kesia shares her family's motto to Live life and remember to help others in any way you can.
• Andi encourages Mario and Kesia to continue to share their story because it will help many understand the need for Organ Transplants. 

 

3 Key Points:

1. Even young athletes can experience health conditions, that require the need for an Organ Transplant.
2. Remember self-care if you are a caregiver for someone going through a health issue.
3. Share your gifts and create access and awareness of necessary resources for those in need, because, in the blink of an eye, it could be you.  And always remember we are meant to be in community with one another. 

 

Tweetable Quotes:

• “Step out of your comfort zone every day.” - Mario Jarrett
• “I am grateful for every opportunity that we get to spread more light and awareness for individuals to consider being a donor for children like Mario.” - Kesia Jarrett
• “I am not bitter.  I know it happened for us…not to us.” - Kesia Jarrett
• “Stay in the space of understanding that even though you are going through this journey it is not the end… until it is.” - Kesia Jarrett

Resources:

https://getoffthelist.org/

https://www.networkforhope.org/

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

https://www.facebook.com/NetworkForHopeOPO

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

https://aopo.org/

 

EP 95: The future of Organ, Tissue, and Eye donation could be changing, With CEO of Gift of Life Michigan and new President of AOPO Dorrie Dils

Welcome to today’s episode of This Thing Called Life, where we explore the evolving landscape of organ, tissue, and eye donation. Join us as we chat with Dorrie Dils, the CEO of Gift of Life Michigan and the new President of the AOPO.

In this episode, Dorrie and Andi Johnson delve into Dorrie’s journey as a female CEO in the transplant field, discussing the challenges and triumphs she’s faced along the way. They’ll also highlight the significant increase in donations following expanded donor criteria, reflect on Dorrie’s impactful speech, and uncover the steps that led her to this pivotal role. Don’t miss this insightful conversation!

Episode Highlights:

• Dorrie Dils, president and CEO of Gift Of Life Michigan and the new president of the Association of Organ Procurement Organizations, shares her experience in her inaugural year as president. 
• Dorrie shares that she has been in this field for 33 years, and there's been tremendous pressure from Congress, the White House, and outside entities to drive donation forward.
• There have been concerns due to change in metrics which may cause a rise in decertified OPO’s and what that will do for patients who are waiting and for donors and donor families who wish to donate. 
• There has been a lot of change but Dorrie shares that she feels better today than ever before.
• Dorrie shares that the other big thing, which can't be denied, is just the massive increase in donations after circulatory death or ECD.
• Andi asked Dorrie what other positions she has worked in the OPO, Andi wanted to take a minute to have Dorrie share, as a woman in this field, what she did to reach her position of leadership today.
• Dorrie shares that she was in Critical Care Nursing, then a Donation Coordinator, and at times needed to be in hospital development, PR and Public Education.  Leadership opportunities led her to becoming procurement director then Chief Clinical Officer, before becoming the president, and CEO.
• Dorrie talks about her speech and what motivated her to talk about correlating the Barbie Movie (2023) and the need to be perfect in the transplant world.

 

3 Key Points:

1. President and CEO of the Gift Of Life Michigan and the new president of the Association of Organ Procurement Organizations, Dorrie Dils shares her experience in her inaugural year of presidency, and the challenges due to changes.
2. Dorrie shares that the other big thing, which can't be denied, is the massive increase in donation after circulatory death or ECD.
3. Dorrie shares her years of experience, the steps that she had to take before stepping into her leadership role as a woman CEO, and the role of her deep passion for her working field. 

 

Tweetable Quotes:

• “I've been in this field for 33 years, and it truly is the biggest change I've ever seen in our work, and there's been tremendous pressure from Congress and the White House and outside entities to drive donation forward, which has been a good thing.” - Dorrie Dils
• “We have in the world, have the best system for organ transplantation. And I think sometimes that gets forgotten.” - Andi Johnson
• “But I think the biggest ‘aha’ moment is just how I've always been a hard worker. I've always felt in control of my success.” - Dorrie Dils
• “This field has evolved so much, and one of the things that I really hope will be my legacy is the evolution of how women are seen and treated in this field.” - Dorrie Dils

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 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.