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

This Thing Called Life

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/