Help Chris Get a Second Heart Transplant

Hi, my name is Chris Johnson, and I’m a 45-year-old heart transplant recipient facing transplant rejection and heart failure — 22 years after receiving my first heart transplant in 2002.

Now, I’m fighting for my life again, hoping for a second heart transplant at the University of Chicago — one of the leading heart transplant centers in the country. A retransplant after over 20 years is complicated enough that we may need to go out of state if UCM is unable to take on the surgery. This journey has been incredibly hard on our family physically, emotionally, and financially. There are a lot of medical and financial hurdles to cross so I can be listed for a chance at another heart.

My family means everything to me—my spouse and our three children, who are 17, 8, and 4. We've been doing our best to stay strong through the hills and valleys of life, especially now as our oldest gets ready to attend Illinois State University. Currently, we’re in need of financial assistance.

In early 2024, I was diagnosed with heart failure (for a second time with the first being prior to my first heart transplant in 2002). Despite two decades plus of properly taking anti-rejection meds, my transplanted heart has become stiff with scar tissue. In late 2024, during the holidays, I became hypoxic at home caring for my youngest child and was hospitalized and treated for an irregular heartbeat (a fib) and heart rejection. My health and strength continued to decline and then in late January 2025 I got influenza A and endured a two-month long hospital stay to recover. Unfortunately, while hospitalized, my heart rate continued to dip into the 40s and would no longer function the way it would before the damage from influenza. It was necessary for me to have a permanent pacemaker implanted but a few days after the surgery, I suffered from a critical bleed near my femoral artery that led to hemorrhagic shock and fully coding. I am left with a retroperitoneal hematoma that is measured at 9.5 x 6.5cm. Fortunately, the size of the hematoma eventually tamponed off the bleed while I waited for proper medical care.

Unfortunately, I am still in constant abdominal pain, and still without much feeling or function in my right leg due to nerve compression by the large retroperitoneal hematoma. While I am working hard in PT and OT to regain strength and whatever function remaining, we are now modifying our world to be accessible to me with a walker. I've missed my children's activities that require walking since I'm not strong enough to use my walker long distance and I don't have a wheelchair. We are also now traveling 8 hours round-trip for specialist appointments, treatments, and procedures to test for and treat transplant rejection in order to get me medically stable and strong enough to be listed for a heart retransplant.

On top of everything, while I was hospitalized, our home suffered serious water damage when a frozen pipe thawed and burst above our kitchen ceiling. The damage was extensive, and my family was without water for a month during initial clean up and repairs. This caused my spouse to not only travel to and from the hospital with our kids but also to and from hotels every couple of days while trying to continue consistency in our kids’ lives during a traumatic chapter. Near the end of my recent hospital stay, my spouse was unable to take leave and lost her full-time job. We are now without any income.

I am home, alive, and thankful to be able to mobilize a bit still with a walker. There is a long road to recovering enough to be listed for a new heart. We're still trying to recover from all of this, while also preparing for my son to start college and making ends meet for our younger kids. While we have been extremely lucky to have family that has helped us during this time, it’s simply not sustainable for our family of 5 to lean so heavily on our loved ones.

This GoFundMe is to help us cover the following needs at this critical time:

• Medical expenses for treating rejection of transplanted heart

• Medical expenses for treating life-altering retroperitoneal hematoma

• Medical equipment and additional physical therapy expenses not covered by insurance

• Travel expenses (rental vehicle and hotel) for transplant recipient procedures, transplant evaluations, and follow up appointments

• Mortgage, utilities, and other immediate basic living expenses for our family while my spouse and I are out of work during this medical crisis

• Emergency home repairs not covered by insurance

• Initial expenses for our oldest to study psychology at his dream university in August 2025

Any donation, no matter the size, brings us one step closer to stability on the short timeline we are working with — and hopefully, to become medically stable enough to be relisted for a second chance at life with a new heart.

Thank you for taking the time to read our story. If you’re not able to donate, please consider sharing this with others who might be able to help. Every bit of support means the world to us and will make a huge difference to our lives.

With Love and Gratitude,

Chris, Kathryn, & Family