Thank you for this newsletter! I was born with Tetralogy of Fallot and was “lost to care” until my 30th birthday when I was told that not only was I NOT actually cured as a child, but that I would need several more heart surgeries in my life…starting right away! I had a valve placement in 2008 and will likely need a replacement in the next few years. Back when I was 30 I was stunned that so many people like me were told that they were fixed as kids and could live a normal life, only to have a health crisis as an adult and learn otherwise. Keep up the great work! We need more information out there like this to help people get the care they need, both medically and emotionally.
Absolutely loved our conversation and I keep hearing the same from listeners!
Thank you for this newsletter! I was born with Tetralogy of Fallot and was “lost to care” until my 30th birthday when I was told that not only was I NOT actually cured as a child, but that I would need several more heart surgeries in my life…starting right away! I had a valve placement in 2008 and will likely need a replacement in the next few years. Back when I was 30 I was stunned that so many people like me were told that they were fixed as kids and could live a normal life, only to have a health crisis as an adult and learn otherwise. Keep up the great work! We need more information out there like this to help people get the care they need, both medically and emotionally.
Reading this newsletter for the last six months has been eye-opening. This was another illuminating conversation. Thank you, Leigh and Virginia!