Ava’s Story

Ava's Heart / Ava’s Story

Ava Kaufman

Ava’s Heart Founder & Executive Director

I'm Ava, and I have the heart of a 17 year old boy. Nine years ago I was a perfectly healthy businesswoman and mother, and in great shape. I’d been a jazz dancer for Gloria Gaynor, dancing for years around the globe. I still took class, and was strong and fit. Until I wasn’t.

What started as a simple rash was actually a rare auto-immune disease. The disease I had is called Dermatomyositis. It is a connective-tissue disease that destroys muscles. Frequently affecting the skin and muscles, it is a systemic disorder that can also affect the joints, esophagus, lungs, and heart. It went misdiagnosed, and continued advancing, so that in short order it destroyed all of my well-honed dancer’s muscles. For three months I had visited the dermatologist complaining of itching on my fingers, back, eyelids and shins. No blood tests were taken, which likely would have offered a proper diagnosis.

During the last two weeks of those three months, I went from being a ‘super woman’ to needing a walker, I went from 105 lbs to 200 lbs, and finally, my body just gave out and shut down. I was on my way to a doctor’s appointment when I fell down, unconscious, was rushed to the hospital and within hours put on life support – an ECMO machine, an LVAD, and a pump. My illness had come on so quickly that there wasn’t time to prepare for anything. I have one vague memory of being taken to the hospital, and then I have no memory of my 11 year old daughter, my family and friends; nothing.

The heart is a muscle, and the disease had destroyed my heart. The only thing that would keep me alive was a new one. In what can only be described as a series of miracles, the transplant team at Cedars Sinai Medical Center decided to give me a chance and put me on the list. They knew it was a long shot that I might live. In fact, many never believed I would live long enough to get a new heart, much less live through the ordeal, or ever walk again. It was a total experiment.

A special thank you to my donor family.

Some things in life are just meant to be. In ten days, on my real birthday, I received a new heart. For two months I lay in an induced coma. The first time I opened my eyes and heard I’d had a heart transplant, I thought they were joking; there was no way. How could that be possible? Until then, transplant had been a dot on my driver’s license. I’d never really thought about it. I had certainly never actually considered the idea of someone’s death being able to give life, causing grief and happiness in the very second that it occurs.

At some point in the hospital post-surgery, I could not move at all. I was trapped in my own body, a childhood fear realized. Being unable to move, I was truly ready to let go. In the midst of my coma, I had felt as though I was sitting in the middle of the palms of two large hands, sure they belonged to God. But I couldn’t leave my child behind. Nor did I want to survive if it meant being unable to play with her. So it was there at that moment that I made a promise. If I could get back to being my daughter’s mom again and to being able to dance again, I would spend the rest of my life giving back.

After volunteering in the transplant centers, I began to observe significant gaps in available post-transplant services. Thus I began Ava’s Heart.

As you can see my story was quite dramatic; many are. I was fortunate enough at the time to have great insurance and to live near an amazing transplant center. I left the hospital in four months in a wheelchair, my money embezzled by business partners, newly divorced and almost broke. But I had my child and I had my life.

Never give up, create huge dreams and make them come true. Out of my transplant journey came Ava’s Heart. What started out as a promise to God has turned into an organization that is focused on helping families and recipients on their personal transplant journeys.

And I am grateful, every day.


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