My name is Ava Kaufman, and my doctors didn’t think I would be alive today. I defied the odds after being listed for – and receiving – an experimental heart transplant.

Before my transplant, I was a healthy mother and businesswoman who loved to dance. I randomly noticed a rash appearing on my hands and shins, so I went to the dermatologist. They told me that I had psoriasis, but it was steadily getting worse and led to highly elevated muscle enzymes. They sent me to a rheumatologist for a muscle biopsy, where I fell unconscious.

I was rushed to Cedars Sinai, where I was immediately put on life support. I was lucky enough to live five minutes away from the hospital. If I hadn’t, I may not have had access to the lifesaving treatment I needed. The doctors determined that I had a rare autoimmune disease, dermatomyositis.

This disease significantly deteriorated my heart, something the doctors had never seen before. My only chance at survival, which the doctors thought was slim, was to receive a heart transplant. While on my deathbed, I made a promise with God that if I survived – if I was able to spend more time on Earth with my daughter, Jade – I would give back to my community for the rest of my life. I was fortunate enough to receive a heart transplant in time to save my life. Coincidentally, the procedure happened on my birthday.

To uphold the deal I made with God, I founded Ava’s Heart, a nonprofit that gives critically needed assistance to organ transplant recipients who cannot access or afford it. The transplant journey doesn’t end once a patient has been matched with an organ. Recipients are greeted with mounting costs, seemingly endless tests, and logistical hurdles before, during, and after transplantation.

Beyond the match: Transplant housing posing a barrier

To even qualify for a transplant, patients must live near or be able to travel to a major hospital or transplant center where the surgery would be performed. If they can’t find arrangements within a 30-minute distance, for example, they won’t be able to receive the transplant they desperately need. Through my own journey, I discovered that if a patient can’t afford to be near their transplant center for at least three months post-transplant, they can’t move forward with the procedure.

Post-transplant housing is not covered by insurance, and very few hospitals provide it. During my recovery, I connected with families who were sleeping in their cars in the parking garage of transplant centers for months because they couldn’t afford local housing costs, as well as those who, unfortunately, returned home without their transplant.

I made it my mission to locate housing options in Los Angeles to help ease the burden for transplant recipients, from paying for hotel rooms to renting homes for them to live in while receiving post-transplant treatment. There’s a need to address inequities within the transplant community and make transplantation more accessible and logistically feasible so patients can receive the critical care they need.

Organ donation saves lives.

As more patients are added to the transplant list every year, the demand for organs is outpacing the current supply. An essential step in shortening the supply and demand gap is to encourage organ donation; it’s one of the most touching ways to give back. By donating an organ, you’re giving someone, like me, a second chance at life.

At 75 years old, I regularly reflect on the nearly 16 years since my procedure, and I am so grateful that my transplanted heart is healthy and that I’m fortunate enough to tell my story today. With increased organ donation, we can enhance the chances of giving patients hope. As I tell others, souls go to heaven, organs don’t.

Ava Kaufman is a patient advocate.