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