Transposition of the Great Arteries: My Blood Flows Backwards

03/13/24 • 52 min

Like many babies born with transposition of the great arteries, Amelia was born blue. Her blood was not circulating to her entire body because the two main arteries leading blood away from her heart were switched, sending blood in the wrong direction. She was immediately helicoptered to a larger hospital to undergo surgery to restore blood flow. Over 30 years later, Amelia is still managing the side effects of her congenital birth defect. On this episode of the Major Pain podcast, Amelia discusses living with transposition of the great arteries. In 1988 the prevailing corrective surgery was called a Mustard procedure, which restores oxygenated blood to the whole body. Babies born today will have a different procedure that switches the great arteries to flow normally. That makes Amelia's heart exceptionally rare, since there aren't many patients her age who underwent a Mustard procedure. In high school her doctors wanted to perform the switch surgery, and put a band on Amelia's heart to strengthen it in preparation. Unfortunately, this band caused more harm than good, eventually calcifying and limiting her blood flow before it was removed 15 years later without having the switch surgery done. During the years when Amelia's blood flow was limited she was constantly exhausted and her hands were often blue, but her doctors brushed off her complaints as normal for someone with a congenital heart defect. This added to the compounding medical trauma of her many surgeries (including three open heart procedures), eventually leading to a diagnosis of complex post-traumatic stress disorder (CPTSD). As an adult, Amelia was also diagnosed with autism, endometriosis and obsessive-compulsive disorder (OCD). Finally receiving these diagnoses has been deeply affirming, opening the door to better Amelia's understanding of self. Listen to Amelia's amazing story on this podcast episode! You can connect with her online at https://lnk.bio/Ameliablackwater Our host Jesse and his longtime partner Andi just got engaged! They tell the story on this month's bonus episode over on Patreon. Head to https://www.patreon.com/majorpainpodcast to gain access to the bonus podcast when you subscribe to support the creation of Major Pain.

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Unpacking the Rage of 15 Years Living with Chronic Pain

MaKenzie has received a slew of chronic pain and chronic illness diagnoses over the years, including Chiari malformation, lupus, Sjogren's disease and Hashimoto's syndrome, but she isn't focused on her diagnoses. She's focused on managing the daily impact of her symptoms and the emotional toll this journey has taken. She says, "The damage of living a life like that for the better part of 15 years takes a toll on you mentally, emotionally, spiritually, physically, it's been a long, long road." In this episode of the Major Pain podcast, MaKenzie walks us through her journey and the recent changes that have allowed her to begin healing. She tells us about receiving brain surgery at 21 years old for a severe Chiari malformation that was pushing her cerebellum down 32mm. She also discusses the rheumatologist who didn't read her chart to realize she'd tested positive for lupus, and how her faith and parenting has been tested by this journey. Thankfully, MaKenzie is now in the hands of a functional medicine team that is finally helping her to heal. Her experiences have pushed her to become a social media advocate for other chronic illness and chronic pain patients. Connect with MaKenzie online here: https://stan.store/hopeforhealingwithmakenzie

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The College of Adaptive Arts Is Providing Continuing Education for Adults With Disabilities

DeAnna Pursai and her sister Angel describe themselves as a package deal. A foundational experience growing up in rural Indiana was when DeAnna went off to college, but Angel was left behind due to her disability. After age 22, adults with disabilities age out of national education programs in the US. This was devastating for Angel, who's only option was to attend a day program that was more like a nursing home than a college experience. The bullying Angel experienced at this day program caused trauma that still haunts her. DeAnna lived these experiences vicariously through her sister, and made it her mission to provide ongoing education to adults with disabilities. DeAnna co-founded the College of Adaptive Arts with Dr. Pamela Lindsay, which is now in its 15th year of operation. This college provides an equitable, lifelong college experience to adults of all abilities who historically haven't had access to college education. CAA offers 1-hour classes in 10 schools of study including visual arts, business, communication, science, technology and more, both online and in-person at their campus in Saratoga, CA. Students need only a desire to learn to earn full credit. While they do graduate and receive a diploma, students are encouraged to re-enroll and keep learning as long as they have interest. In this episode of the Major Pain podcast we sit down with DeAnna and Angel to learn about the College of Adaptive Arts. Angel shares what it felt like to be left behind when her sister went off to college, and her pride that she has helped create this path to continued education. Angel's favorite classes are adaptive guitar, computers and clay animation, and she even shares some freestyle rapping. DeAnna discusses the history of CAA, and how Angel has been her inspiration. Her vision for the future is to apply this teaching model as a layer of education at all college campuses, building a global infrastructure of lifelong learning for adults who traditionally haven't had access. Learn more about the College of Adaptive Arts or donate to support this program at https://www.collegeofadaptivearts.org/