New Heart, New Life with Ava Kaufman

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TSP 162 | The Transplant Journey

Episode Summary:

We’re all being disrupted in our businesses and in our lives, but what happens when we get disrupted in our health? Ava Kaufman was a former dancer who lost almost everything when she suddenly fell ill and ultimately found herself in need of a heart transplant. But she took this negative, turned it around, and created an organization called Ava’s Heart which is a non-profit that helps families of organ transplant patients. Ava shares talks about her new heart and new life in her book, The Transplant Journey, and shares some great insights about how to start a non-profit, the obstacles you have to overcome, and the life lessons you learn when you have a new heart and literally a new start. Find out how she did it and how you can, too.

Our guest on The Successful Pitch is Ava Kaufman. She has an incredible story of getting a new heart, a heart transplant. We’re all being disrupted in our business and in our life, but what happens when we get disrupted with our health? She has some great insights about how do you start a non-profit, what obstacles do you overcome and what life lessons do you learn when you have a new heart and literally a new start? Like starting over in your career or starting over and pivoting with your startup. She said, “You’ve got to let go of the small stuff.” She has some real insights in the ability to turn fear into courage. Finally she said, “Your waiting has to turn to patience or you’ll lose your mind.” Find out how she did it and you can too.

Listen To The Episode Here

New Heart, New Life with Ava Kaufman

I have a special guest introduced to me by one of my former guests, Steve Rohr. Her name is Ava Kaufman and Ava is a 60 something year old woman with a seventeen year old boy’s heart, literally. She was living the good life when she suddenly took ill and ultimately found herself in need of a heart transplant. Fortunately, she got one. That’s not always the case for everyone. In the process, Ava who’s a former dancer, she lost almost everything; her successful business, her home, but she took this negative and has turned it around, created an organization called Ava’s Heart, which is a non-profit that helps families of organ transplant patients. It’s AvasHeart.org. This is a great opportunity for everyone who’s listening to deal with whatever disruption you might be experiencing in your personal life and in your business. Ava has literally figured out how to pitch when it gets personal. Ava, welcome to the show.

Thank you so much, John. It’s wonderful to be here. I’m excited to meet you through Steve.

One of my favorite questions to ask my guest is to tell me the story of origin. Paint the picture of where you grew up. You had a dream of being a dancer, which you fulfilled. Take us all the way up until you started to feel ill.

I worked as a professional dancer when I lived in New York. I went to NYU, majored in dance. I toured the world with Gloria Gaynor and Donna Summer and worked in Paris with Johnny Hallyday. I had a wonderful life and then I moved out to California, met a guy, fell in love. He had a small little moving company and we turned it into this mega business, Blue Skies Delivery and Installation, which we sold. I have a beautiful adopted daughter who I adopted at birth. When I was 58 and had just sold our business and I was starting a new business about teen obesity, I developed a rash on my hands. Being the person that I am, I went to dermatologist. She told me I had psoriasis for three months. To make a long story short, I had an autoimmune disease called Dermatomyositis, which went misdiagnosed because no one gave me a blood test.

By the time the disease had progressed and started to weaken my muscles, it came on quickly. I had three months of a rash and then went to my doctor. She did blood work, told me my muscle enzymes were highly elevated. She sent me to a rheumatologist who proceeded to send me for some tests. I was on my way for a test and I dropped dead in my house and ended up at Cedars-Sinai Medical Center with LVAD, a pump and an ECMO machine. I don’t remember any of this at all. I was told I was given days to live and that I would need a heart. That would be the only thing that would save my life because the disease had destroyed all my muscles, including my heart. Because I had been in such good shape before, the muscle weakness of the disease came on quickly. Within two weeks, I put on 35 pounds. While I was in the hospital waiting for a heart, I blew up to 200 pounds. My normal weight is 110. That was a lot.

[Tweet “Fear turns to courage when you know your why.”]

This is all what I’ve been told because I was on life support at the time. They listed me as an experiment because I was at Cedars and they’re a pretty fabulous place. No one ever thought I would live long enough to get a heart and I was too sick to get an LVAD or a mechanical heart, things that they give you now as a bridge to transplant. I ended up getting a heart in ten days on my real birthday.

You literally were considered dead. You dropped dead and they brought you back?

They brought me back with paddles and they put in an LVAD, which is left ventricular advice to keep my left side beating, a pump on the right side, and then an ECMO machine to keep you breathing. Usually, they don’t do a transplant if you’re on ECMO. This was all I’ve got, this was God’s plan. I really feel it was God’s plan because I got a heart so quickly on my birthday. They put me into an induced coma for two months and as I was coming out of the coma I realized that I was trapped in my body and I couldn’t move. I heard people telling me that I had a heart transplant. I was petrified, and I couldn’t communicate anything.

The only thing that I could do was have tears run down my cheeks and then they’d knock me out again. It was one evening, the clock said 6:00 PM but it always seemed like the clock was saying 6:00. I was ready to leave everything. It was too hard, too embarrassing, to debilitating. I literally couldn’t move a finger. I couldn’t move my head, but my mind was clear, and everything was white. The room was white, everything was white. I was dressed in white and I said, “I’m ready to go.” I kept looking for the light, for my mother or my grandmother and nobody was there but the room was white and it was bright lights. I then found myself sitting in this huge palms and I said, “I’d lived a great life but I can’t do this anymore. My mind is going to explode.”

All of a sudden, I smelled my daughter’s dirty hair. She was an equestrian and she used to ride horses. She was eleven and we used to fight over her not washing her hair because she rode every day. I realized that there was no way that I could leave her because we were in the middle of a divorce and many things were going on and she needed me. I knew she needed me. At that moment, I made a deal with God or my higher power, whatever we choose to call what’s there. I said, “If you let me come back to being Jade’s mom again, to being who I was before. To be able to walk, run, and play with her,” because at that moment, I couldn’t move at all and the thought of doing anything was impossible, “I will spend the rest of my life giving back.” At that moment, I didn’t know what that would be, but I say now that that was the beginning of Ava’s Heart.

How long ago was that?

That was eight and a half years ago.

You’ve been having these last eight and a half years be all about helping other people going through your journey because there are a lot of things that have to happen when you need a transplant. Sometimes you’re on a waiting list. What would you say is the biggest lesson you’ve learned over these eight and a half years of having a non-profit charity?

I would say that the only way to get through life is living one day at a time. That life can change on a dime and that you have to look inside of yourself and find out what’s important to you at that time.

Do you find yourself not sweating the small stuff as much as you did before the heart transplant?

That’s exactly perfectly said because if anyone would have told me that I would have started to do something without not without the knowledge of knowing what it was, without the financial backing. I leaped into this without knowing anything and learned along the way.

TSP 162 | The Transplant Journey

The Transplant Journey: You have to learn what to say when applying to grants.

That’s what an entrepreneur does. Gather the resources and my passion and vision are strong that I’ll find the right people to support me.

It’s taken me a lot longer than I had anticipated, but that is definitely what’s happening.

What’s the biggest challenge in running a non-profit versus when you had a company that was for profit?

Getting people to believe in what you’re doing, especially because my mission is about something that most people aren’t aware of. They know about it, but they’re not aware of and until your life’s been touched by transplant, you’d had no reason to. I’m a college graduate, my family and my friends are all intelligent, smart people. No one had a clue as to what this journey would be or entail. The doctors tell you so much, but everybody is different.

My personal passion is helping as many people as possible become master storytellers and have a great elevator pitch so that people can instantly get what it is that you’re doing, whether it’s for profit or not. If we’re going to play a little bit, if you’re okay with this, elevator pitch for Ava’s Heart. From what I gather from looking at the beautiful website, we help families find temporary housing so that they can be near their loved ones as well as the person who’s waiting for the heart transplant, who has to be close to the hospital at a moment’s notice to find affordable housing, which is not always easy to do in a place like Los Angeles. Would that be a fair description of what you’re doing?

It would be a partial description of what I’m doing, and a very large part because you cannot get put on the list for a transplant, and I’m not talking about kidneys because kidneys are different, for a liver, for lungs or for a heart, unless you have post-transplant housing. Being that not every hospital is a transplant center and being that Southern California has the best transplant centers in the United States. Cedars is number one in the world for hearts and UCLA does more transplants than any other hospital in the world. Southern California is a destination for people at the end stage of their life and many who had been told to go home and wait, that there was nothing that could be done for them come here because there are special treatments at both of these hospitals, UCLA and Cedars, that had antibody treatments and things that can help people get listed.

You didn’t need this service because you live here, but this is for people who don’t live here, is that correct?

Right.

You need housing if you don’t live in Los Angeles and want to get your surgery in one of these two hospitals, you need to live within fifteen minutes, ten minutes, five miles?

Before transplant, you need to be within three hours. If you live in Nevada, Nevada has no transplant center. Everybody comes here. When you get the call, hop on a plane and you come here. Some people wait at home and some people wait in the hospital.

[Tweet “Let go of the small stuff.”]

The majority is for the post-transplant. How long does that typically take? How long do people need this post-transplant housing?

At least a month or two, they request three. Sometimes if I can’t get someone three months because it is expensive, and my funds are limited, they can stay for two. We have many people from Bakersfield, San Diego, Santa Barbara or Temecula.

That’s painting the picture. I always talk about whether you’re pitching someone to become a client, a customer. You started to get funded or in this case a non-profit, we have to tug at the heartstrings to get people to open their purse strings. We need to tug at some heartstrings here today. Imagine your life was about to end unless you got a heart, but you couldn’t get a heart or even get on the list to get a heart unless you were living close enough to one of these two hospitals and you couldn’t afford the housing. What would you do? This is a big problem that you normally don’t even know exist until you’ve gone through it. We’re asking you to open up your hearts and have compassion for people that you don’t even know who need a place to live so that they can survive the heart transplant.

That’s the beginning of a whole another journey of dealing with the anti-rejection medicine and all kinds of things. It’s not like, “See you later.” There’s a lot of care that’s needed and you can’t stay in the hospital the whole time for that. You need to go on and live your life and build your immune system up. There’s something in the journey and the messaging of literally tugging at heart strings to get a new heart. The kind of person that donates their organ, in your case, it was a seventeen-year-old boy, who made that decision, or his family made that decision that he was willing to give his heart up to someone who could use it like you. It all stems from this concept of sometimes we only want to help people that we can physically see. We’re seeing, “I’m going to go volunteer and serve food,” which is great, but it’s a step above is when the help you’re giving is not someone that you know or probably will ever know.

The other thing that we started to do, we’re helping donor families as well because without the donor families, we have no transplant families. Many of these families are not financially comfortable. There was a sixteen-year-old boy that was shot in a drive-by in downtown LA. His mother was a single mom with four other children. He was a good kid, wanted to go to college. He just was in the wrong place at the wrong time and he got shot. This mother donated his organs and he saved eight lives, and I can’t tell you how many others with tissue and eye donation as well. He was young and strong, had strong lungs and great heart. She did not have the funds to bury him. In my eyes, he’s a hero.

He wasn’t on a battlefield like our vets. He was gunned down in this country in Los Angeles. I feel like he needs to be honored and not even for the world but honored so that his family feels good about what they did. That was the first family that we ever helped and this year, I’m going to announce it at our event on September 14th, we will be starting to help donor families as well. They are the true heroes and I want to thank my donor family right now and every other donor family out there because what you do is heartfelt and amazing. You never know what that person is going to do with that organ. For my donor family, I am passing it forward and I have many other families because you decided to give me a heart.

That’s what inspired you to write your book, The Transplant Journey: A Guide To Transplant: Extraordinary Stories, Hope and Encouragement. What do we find when we buy and read this book?

TSP 162 | The Transplant Journey

The Transplant Journey: A Guide to Transplant: Extraordinary Stories, Hope and Encouragement

It’s written by me from my heart. I’m not a professional writer and it’s my thoughts on how fear is such a big part of this whole thing and how I’ve seen it. Not only in myself but in many of the people that I’ve helped, fear really turns to courage. All of these people waiting in hospitals or waiting at home are warriors. They’re courageous warriors and many of them are children. We don’t hear about all that much, but I’ve helped many babies and young children. As a matter of fact, one little girl, her name is Jessica, she’s had two heart transplants and she told me she’s going to take over Ava’s Heart when I get too old, so I shouldn’t worry about it.

She turned thirteen and she’s pretty amazing. We talk and she tells me her outlook on it because it’s different when you’re a child as to when you’re adult. It is the family that we’re helping because it was her parents and her brothers, and you get involved with the families. Fear does turn into courage and it makes you look at life differently because when your life is the thing that’s on the line, you realize how much you want to be here. All of the other things like, “I can’t believe it. I’m waiting here for half an hour and they still haven’t taken me to do my nails. They’re an hour late delivering the sofa. Where are the moving men?” All those little things that bothered people every day, I tried not to let bother me anymore. It doesn’t matter. It doesn’t. Life is such a beautiful gift and once you’ve almost lost it, whether it’d be a transplant or it could be cancer or whatever that you’ve been through, you look at everything differently. The sky’s bluer, the grass is greener, and you don’t sweat the small stuff. Love is the most important thing and friendship. I can say that I decided to live because of the love for my daughter.

What goes into that whole why, which is part of your book. I know it’s this whole concept that whether you’re a startup, working for yourself or working for someone else, you have to do something besides doing it to make money. You have to have a bigger purpose and mission and why you’re here, what you want to do with your life, but also in your business and your customers feel that way as well. When you’re “pitching” someone to support this charity or hire you to do something, if you have a bigger why, let’s say you’re a real estate agent, your bigger why could be I love helping people find their dream home. Something more than, “I just need the commission from selling you a house,” that people then tap into this. You talk about how waiting turns to patience and I want to see if there’s a takeaway that you could give us on how can we all learn to be more patient?

For me, I didn’t have that experience. I got a heart in ten days. I didn’t even know I was getting a heart till after I got a heart. I learnt that from the people that I’ve helped. I’ve gone through two years with some people while they were waiting with artificial hearts or LVADs for a heart or for lungs. That’s how I learned that waiting has to turn to patience. Otherwise, you can lose your mind. It gets back to one day at a time and that whole thing of waiting turns to patience has helped me grow this organization because it’s such a slow process.

[Tweet “Waiting has to turn to patience to stay sane.”]

The experience of waiting for your heart teaches you patience, even if it’s not your own personal experience. You see other people. Then your own patience because everybody, whether you’re working for yourself or another company, profit, non-profit, everybody wants rapid growth. That’s the key criteria for everything. I want to help as many people as possible.

In my life and everything else that I’ve done, I managed a piece, my husband and I built a business together. The growth was fast paced. We were providing a service. I knew how to sell it. It wasn’t as slow as this because number one, you ask for money in a different way. You have to learn what to say when applying to grants. When you’re in the non-profit world and you’re asking people with a lot of money for money, they say, “You don’t have any money, why would I give you money because how do I know you’re going to be able to sustain it?”

It’s similar to what a startup goes through trying to get their initial funding.

I was very fortunate. There’s a family foundation in Orange County called Change A Life Foundation. The gentleman who started it, who no longer is alive, was an amazing man and he wanted to help people make a difference in their lives. He put all this money into this foundation, Change A Life Foundation. They have partners and there are lots of different requirements to being one of their partners. Once you’re a partner, you can then apply for life-saving grants for X amount of people a year. A dear friend of mine who I knew through the horse world with my daughter, after my transplant sent me to this website and said, “Look at it and call Lisa Fujimoto.” I called Lisa Fujimoto who ran it and I told her I was a friend of my friend and we met, and she fell in love with my story. I was starting my 501(c)(3). I didn’t even have a board. She helped me put everything together and I became a partner with Change A Life. That changed my life and the life of the numerous people that we’ve helped throughout the last five years with life-saving grants up to $7,500. With housing, food, guest cards, strollers, baby seats and dental work but mostly housing because that’s what’s needed. My long-term goal is to have housing here in Southern California and also to become the go-to-foundation in this country for transplant patients. As David Foster has a foundation in Canada and he helps every transplant family with whatever they need, whether it’s paying their rent for two months or helping them get back on their feet, that’s what we need in this country and we don’t have it.

You certainly have a big vision, a big passion, and a big heart. If there’s one final thought you want to leave our audience with, what would it be?

Souls go to heaven. Organs don’t.

TSP 162 | The Transplant Journey

The Transplant Journey: Souls go to heaven. Organs don’t.

Tell us what that means.

It means to be an organ donor and help save lives because 22 people die every day waiting for life-saving organ. There was a young girl who was waiting for a heart in UCLA. Her mom used to take her into the chapel to pray. One day she looked at her mom and she said, “Am I praying for new heart or am I praying for someone else to die?” No one’s praying for anybody to die but there’s a plan in the universe and things happen. If that does happen to you or someone you love, you can turn that sorrow and that grief into something incredible.

You’ve certainly turned that into something incredible and I’m sure that person whose heart’s beating in you is thrilled to know on the spiritual soul level that it’s going to good work. Thank you so much for sharing your vision, your passion and most of all your story. That’s what we love here at The Successful Pitch.

Thank you so much for having me.

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