A Heart for Ryan

My name is Ryan. I am 22 years old. I live in Illinois. I am a fan of the New England Patriots and the St. Louis Cardinals, don’t hold that against me. I am a chef, self taught and an avid lover of all things food. I am passionate about cooking and feeding my friends and family. The kitchen is my domain.
I am also about to embark on the biggest challenge in my life. I will be waiting in St. Louis at the Children’s Hospital for a new heart. I am excited at the thought of having a successful transplant and finally getting on with my life. I have been waiting a long time for this.
My story ~
I was born with a complex congenital heart defect that resulted in multiple cardiac surgeries from birth. My first few operations were performed in Chicago then several operations thereafter at Mayo Clinic in Minnesota. Because of some of the surgeries I had, I ended up being diagnosed with PLE (protein losing enteropathy) and things became more difficult for me. There is no cure for PLE. The usual course of treatment is a new heart. By 2008 I was listed for a transplant at Mayo Clinic. And so I waited patiently for that call. It never came. By 2016 my active status listing was being removed and the surgeons at Mayo were no longer on board with transplanting me, I was too high risk. At this point my only option was to see if other transplant facilities felt the same way or was there someone still willing to perform this procedure. My doctor at Mayo reached out to the physicians at Children’s in St. Louis and they were willing to evaluate me for transplant. After a week long evaluation process they gave me the thumbs up. I will be admitted next week (April 2017) to St. Louis Children’s Hospital and I will be able to transfer all of my waiting time that I accumulated while being listed at Mayo. My wait will be short this time, different status, different facility, lots of time accumulated & more potential offers available. I plan on fishing on the lake in Northern Wisconsin in July so I am counting on St. Louis to pull through (no pressure).
I have a wonderful support system around me, my parents, Bill and Jannel H. and brother, extended family and close friends that I value very much. My mom, Jannel will wait with me in St. Louis and my dad, Bill will be at home and continue to work where he teaches high school. He will join us in St. Louis when a donor becomes available. Unfortunately, my mom was not able to keep her job given the length of absence she needed in order to care for me. While the financial aspect of all of this is daunting, the stress and emotional burden on my family is often times just as difficult. Insurance helps, but does not cover everything. We also need to be able to cover travel expenses back and forth, lodging, food, and many more visits back to St. Louis post transplant for follow up care.
If you wish to donate, I thank you from the bottom of heart, truly. While my life has been complicated to say the least, I believe that things happen when they are supposed to happen. And maybe I was not supposed to be transplanted years ago. Maybe everything was leading up to this moment, this hospital, this donor, this surgeon on this particular day.