Matt Johnson was diagnosed with congenital heart defects shortly after birth. He battled heart issues throughout his life, undergoing numerous surgeries and never knowing what it was like to be healthy and feel good. He received a heart transplant at UMMC in 2018 at the age of 34, which has finally allowed him to live a normal life. He and his mother, Jane Johnson, a Board member of Second Chance for Life, share their perspectives on this transformative journey.
Matt Johnson: Living My Life to The Fullest
Prior to my transplant, I lived a life burdened by limitations - mostly physical. For anyone who has met me post-transplant, I bet they could never imagine Matt Johnson not living life to the fullest, or being told he cannot do something. For many who knew me pre-transplant, they would tell you that is exactly what I did. What they didn’t know is that I was fighting twice as hard and hid my emotions to prove that I could be that person. To be the person I wanted to be.
From the moment I took my first walk down the hall of the ICU post-transplant I could feel a difference. I felt what “normal” felt like for the first time in 34 years. For the first time, I was healthy. And for the first time, my family and I knew it was true. Pushing that wheelchair (because they made me use it), with wires and tubes hanging out of me looking like something you would see behind your mid-90s TV/Stereo console, I was on Cloud 9. I never wanted that feeling to end. And I haven’t let it end.
Transplant has provided me with a quality of life that I once worried I may never have the privilege of experiencing. With a tremendous amount of love, prayer, support from my family and friends, and of course the selfless decision of my donor and their family, I have been blessed with so many opportunities since receiving my heart in November of 2018. Family traditions have carried on, and new experiences are continuing to bring joy and happiness into my life. None more notable than marrying the girl of dreams and starting a life together. All possible only by way of this incredible journey. It’s not easy and it’s not quick, but the ups and downs and emotional tests have made me a better person. Sure, this second chance at life comes with some limitations, but none compared to the newly found expectations.
Jane Johnson: Reflections Of a Mother And Caregiver
Our lives changed forever on April 23, 1986. Matt was four months old and was failing to thrive after presumably delivering as a healthy newborn. We were referred to a pediatric cardiologist at Minneapolis Children’s Medical Center, and by the end of the day learned that Matt had complex congenital heart defects. His first surgery occurred 4 days later after stabilizing his heart failure.
For the next 32 years we would experience multiple surgeries, heart caths, pacemaker procedures, and cardioversions as Matt began to experience rapid heart rates due to his enlarging heart. Transplant became apparent when he experienced a cardiac arrest while waiting for a flight home from Sacramento, California following a friend’s wedding. An AED and three nurses waiting at the adjacent gate saved his life.
Matt entered the hospital on February 23, 2018, to wait for his heart. Nine months later, on November 16, 2018, he was successfully transplanted, and has been leading an amazingly healthy life since. He married the human resources person at his job who arranged his leave of absence and disability benefits.
Caregiver implies many tasks inherent in fulfilling this role. Getting to appointments, giving meds, and advocating for Matt for others to understand his limitations are some of my most memorable tasks. Learning to be present is what I remember most and still strive for, as the role of caregiver is forever. Caregiver can imply responsibility, obligation, and accountability, but what I have learned as important and productive is to inspire hope. I learned early that I had to be hopeful for Matt, my family, and me to take this journey. As a result, my faith grew immensely, and subsequently became life changing for me. I treasure the memories of successes as well as the dark moments because each reminds me of the multiple blessings we have received over the years. Outcomes may not unfold as we wish, but looking for the meaning in the experience can be healing.
Matt has never complained about his condition. He has not allowed it to define him or limit him. He faces every day with courage and grace and continually inspires our family and others to meet the challenges of life with hope and appreciate the gifts that challenges may deliver.