Ava Kaufman, a former dancer for the famed Gloria Gaynor, is the extraordinary founder of the Ava’s Heart Organization, whose mission is to help those that have been given the gift of life to have a better quality of life. Integral to Ava and her charity’s mission is to bring awareness to the problems and difficulties transplant patients face pre and post transplant, and how having a transplant not only affects the recipient, but the entire family.
Because the concept of transplant is foreign to most of us, The Levity Ball sat down with Ava ahead of her foundation’s upcoming 1st Annual Heroes Ball in Hollywood, California to learn more about her touching & inspiring story, and how Ava’s Heart has turned into the #1 health foundation for transplant patients and their families….
1. It says online on your website www.avasheart.org that have a heart of a 17-year-old boy… Explain how this came to be?
The timing of this question is perfect. The truth is for seven years I thought I had the heart of a 17 year old boy. I was told that by someone in the hospital, fact is I have a woman’s heart and know she was a young mom. i decided I would revisit the idea of meeting my donor family. I had written to them several times in the first three years and did not get a response. Some donors want to meet and others do not. I totally understand either way. I reached out to One Legacy the organ procurement agency in California, and learned that they had never received my first two letters but did have the last one I wrote in 2012. They checked to see if the family was still located in the same place and they were. She called and the person she wanted to speak to was out of the country. Now we are waiting to recontact in the hopes they want to meet me.
I was a perfectly healthy vibrant woman, with a huge life and an 11 year old daughter. In August of 2008 I developed a rash on my hands, back, eyelids and hands. I went to the dermatologist who informed me for over three months that I had psoriasis, no blood work done. Six months latter I was dead at Cedar Sinai medical center, being kept alive by an L-Vad, a pump and an Echmo machine given days to live. Two weeks prior to that I started having trouble walking and breathing and started putting on large amounts of weight. it was beyond scary. The disease I had was dermatomyositis. It is a disease that starts with a rash and then destroys your muscles. being that I was in amazing shape the muscle weakening came on at the very end and came on fast and strong. I remember going to the hospital via a 911 call after I collapsed at home. I was told post transplant that I was the sickest of the sick. The only thing that would save my life would be a heart transplant. At first they did not want to list me They had never seen that disease destroy a heart and were not sure if in fact the disease would destroy the new heart. They listed me as an experiment never thinking I would live long enough to receive a heart. I received my gift of life in ten days on my real birthday. I was then put in a coma for two months, again they never thought I would survive.
2. What was your initial reaction when you realized you had to have a heart transplant?
My situation was very different than most. I was not sick for years or born with heart disease. I was perfectly healthy until I was just about dead. I did not know I had a heart transplant until they woke me up after the surgery and told me, it was a miracle. I was then put into a coma for two months and as I started to wake up I heard my sister telling me I had a heart transplant. it was horrible, I was still incubated and could not move any part of my body. The worst part was my brain was wide wake and totally intact. I remember tears running down my cheeks. So worried about my daughter and oh by the way I was in the middle of a divorce. One night I truly wanted to let go and die, I found myself in a white room looking for the light, which by the way I never saw. Everything was white and I was sitting in the middle of these huge palms. I wanted to leave, I had had a good life. I was aware that I could not move at all and that to get to being who was before seemed impossible. I was ready to let go and felt my daughter pulling me back. I could not leave her and made a promise that if I could get back to being me again I would spend the rest of my life giving back – thus Ava’s Heart.
3. What is the best advice you have for others who are needing and waiting for transplants of any sorts?
My best advice for others waiting for transplant is to enjoy each day. You will find your fear turns to courage and the waiting turns to patience. You will find strength you never imagined you have and come to see how precious the gift of life really is, a very humbling experience. surround yourself with love and laugh each day and find moments in it to laugh about. For most people after transplant you leave the hospital after two weeks or so, I was there for four months relearning how to brush my teeth, feed myself and walk. The disease itself was way more difficult to recover from then the transplant
4. What is the best advice you were given during your emotional time?
Focus on yourself and getting well, don’t think about the past or the future just get well. It took great determination to get myself back to the new me. There is no one anyone can actually be the same because you are living because someone else died.
5. Before all this, you were a jazz dancer for Gloria Gaynor and traveled the world… how was it dancing for her?
I can say it truly was one of the best times of my life. She is an amazing person, loving, kind, funny and warm. A true pro and can she sing. We traveled all over the world, Gloria, the band, three back up singers and two dancers. We were a family and we worked hard, and had fun, went to the best parties, ate great food and love loved what I was doing. My dance partner David Warren Gibson and I after all that time are still best friends.
6. Her track “I Will Survive” seems suiting for your situation… would that be your ‘anthem song’, or what other song best describes what you went through on this journey?
Great question. Yes, it is for sure my song. I had spoken to Gloria after my transplant and she even said that’s your song baby. I had written a book called Heartless and she gave a quote for the back cover, “Ava is not just a lovely person, she is one of the most courageous people I’ve ever met. I’ve known her for decades and she is the consummate survivor.”
7. Have you gone back to dancing since everything?
Yes I have. It took me awhile to relearn walking and then I had to do cardio rehab for my new heart. I am much older now. lol I do dance and do bar method and work out at least 5 times a week. So I am back. I have never stopped dancing in my heart and to be really honest my number one bucket list item is to be the first heart transplant patient on Dancing with The Stars, while I can still move my hips.
8. You have now started up the Ava’s Heart Charity Organization… what are the goals of this foundation?
We provide assistance for transplant patients who could otherwise not receive treatment and care. There is a huge gap between what insurance covers and real life. if you can not afford to stay close to your transplant center for three months or have a full time caregiver you can not get listed. The waiting process can financially devastate families. Sometimes just gas cards can help tremendously in getting back and fourth to clinic. appointments. Transplant is not a cure , it is an alternative to death. We live on anti rejection medication that keeps us alive. Some people have There are huge Co-Pays on medication, we assist with that. Now with the new TAH, Total Artificial Heart and L-Vad, Left Ventricular Device people are able to wait longer for their gift of life. This waiting time can drain a families finances quickly. A person with the TAH or L-Vad needs 24/7 care. We had one gentleman who needed to go home with his L-Vad to wait for his call, but was not able to because the electrical system in his house wasn’t up to code, to allow him to plug in the device. We up-graded his electrical system and he went home, got his degree and a new heart, married his dream girl and just had a baby. We provide resources and refuge. We are also trying to educate the general public and the government that #It could be you. There needs to be a foundation in this country to help transplant families and donor families as well.
They can expect to have a magical night, a great time and learn about transplant and how it impacts not only the patient but the entire family. We have 13 year old Jessica Ostrand sharing her incredible journey. She has had two heart transplants. I adore this child and her entire family. We did a news piece together on KNBC, called “Life Connected”. You can view it on our website. The event will be amazing and our honorees have much to share, on September 17th at The Avalon Theatre and you can purchase tickets on line at avasheart.org. You can also text the word HEART to 41444 on your ell phone and make a donation. We will have both a silent and live auction, amazing entertainment and a cool after party upstairs with more incredible entertainment. It is a fundraiser and we need to be in a position not to have to turn people away. In the last five years we have helped over 250 families.
10. Where do you see your life in five years from now, besides then having a 22-year-old’s heart inside?
I see myself advocating for transplant families and donor families as well. I see my foundation running with a working board and staff. I see us having a Healing House, sort of a Ronald McDonald house for transplant patients in Southern California. I believe I will be doing what I am doing, and dancing until the day I die. Would love to see my daughter, Jade’s dreams come true. I do live one day at a time and enjoy each and every one. Who knows what the future has planned. I for one know things can change in an instant.
11. And final question: What do you want to be remembered for?