October 5, 2011
Following her heart: A Yom Kippur story
This is what Ava Kaufman was wearing when she negotiated with God while in a seven-week coma following a heart transplant: a white turtleneck leotard with a white leather miniskirt, and white thigh-high boots.
In her hallucination, she was sitting in the palms of two giant outstretched hands, and this is what she told God:
If you let me continue to be Jade’s mom, I’ll give back.
Not exactly how most Jews might picture talking to God as they sit on tightly upholstered chairs in air-conditioned sanctuaries on Yom Kippur, invoking images of heavenly hosts and sheep before a shepherd and books of life and death.
But it is exactly what Yom Kippur is about, if we understand it to be a day of introspection and renewal that guides us toward scraping away what doesn’t matter and turning toward living what does.
God accepted Kaufman’s offer, and now — three years after she received in transplant surgery the heart of a 17-year-old boy, on her 58th birthday — she is still Jade’s mom, she is giving back, and in the process she is pretty sure she has narrowed down the exact reason God put her on this Earth.
“I’ve always been a rebel. I do things my own way, but I get things done and I do them honestly and fairly, and I think that is why this happened to me — because God had a plan for me,” said Kaufman, who is in the process of founding Ava’s Heart, a foundation to support heart transplant patients.
“I needed to get out of the life I was in before, and since I’m a very dramatic person, God made it all be dramatic so I would have a story to tell, so I could help people.”
Kaufman’s self-published book, “Heartless,” which she wrote with her friend, reporter and author Jason Thomas, will be released on Amazon later this autumn, and she plans for some of the proceeds to support Ava’s Heart. She speaks, through the Donate Life speakers’ circuit, to schools and other groups about the importance of organ donation and blogs on her experience at Modernmom.com. She also spends every Friday at Cedars-Sinai Medical Center’s Heart Transplant Patient Evaluation Clinic, peer-counseling people awaiting transplants.
Kaufman was raised in suburban New York in a traditional Jewish household, and still has the mien of the Beverly Hills player she was four years ago. At 61, she is valiantly fighting off wrinkles (more about her treatment for that later). Her dark, straight hair is probably neither of those things when left alone. A French-tipped manicure crowns fingers swimming in diamond rings. At 5 feet 3 inches tall, she still has the body of the professional dancer she was for decades, and she shows it off in skinny jeans and black heels, a purple silk blouse and a shabby-chic rose-colored blazer. She has a wry sense of humor and an easy laugh, and speaks with the confidence of a New Yorker and the poise of a performer.
But while she looks very Rodeo Drive, that isn’t her life anymore.
Before she got sick, Kaufman lived on $27,000 a month from a high-end furniture delivery and installation business she ran with her then-husband. Their clients included the Beverly Hills Hotel and the Four Seasons, as well as celebrities, and they lived in a four-story house with killer views east of Doheny Drive, north of Sunset Boulevard.
Now, Kaufman lives on a friend’s ranch in Fillmore, in the Santa Clara River Valley, where Jade, her 14-year-old daughter, does independent online school and rides her horse, Daisy, hours every day. They live off $1,478 a month in disability payments, supplemented by a modest malpractice settlement.
And she has changed along with her circumstances, Kaufman said.
“It’s weird — when you’ve been through something like this, there is no way you can’t look at life differently. You just do, because you’ve been so close to death and all you want to do is be able to walk, or to hold a toothbrush and brush your own teeth, or kiss your child or hug your child,” Kaufman said.
She said she’s learned to let go of her type-A personality tendencies, as well as of the pretenses and judgments of her old life.
“I’ve totally given up trying to control anything. I just leave it up to God,” she said. “I guess I enjoy everything more. I always enjoyed life; I always had energy and a lust for life, but I approach everything in a much calmer way than I did before.”
While she has reached out to her donor family, they are not yet ready to meet her. So she thanks them in her head every day for giving her the gift of life when hers was nearly snatched from her.
Around September 2008, Kaufman’s hands became unbearably itchy, especially around her knuckles. She went to the Beverly Hills dermatologist she saw regularly for Botox and Restylane injections, and the doctor prescribed a topical ointment for eczema and psoriasis. Kaufman was starting a new teen-fitness business and getting a divorce, so her doctor thought the itchiness might be stress related.
Over the next four months, she went to the dermatologist several times as symptoms worsened. Her nails grew thick and her nail beds starting turning black; her skin started to harden, and the rash spread to her back and shins. The doctor prescribed steroids, which helped a little, but never ordered any blood analysis. By January 2009, Kaufman’s body started swelling, and she says she started feeling weaker and weaker — and as an avid exerciser and black belt in tae kwon do, she knew her body well. She went to her internist.
The doctor immediately recognized the symptoms of an autoimmune disorder and put Kaufman through a battery of tests. The tests showed a problem with her muscles, so she sent Kaufman to a rheumatologist. The rheumatologist was in the process of running more tests to narrow the diagnosis down to dermatomyositis, an inflammatory disease that attacks the muscles, when, over the course of about two weeks, Kaufman got dramatically weaker.
“During that last week at home, I started thinking, ‘If I
die, what is going to happen with Jade? Who would she be with?’ ” she said.
At this point, Kaufman was using a walker and having trouble breathing. By the time a friend rang her doorbell to pick her up for her appointment to get a muscle biopsy, she crawled down the stairs and collapsed before she got to the door. An ambulance took her to Cedars-Sinai Medical Center.
It wasn’t long before doctors figured out that the dermatomyositis had attacked Kaufman’s heart — a rare occurrence — and destroyed it in about a week. She underwent surgery to hook her up to a ventricular assist device and an external pump kept her heart going. She was also on a respirator. But Kaufman continued swelling, blowing up to 200 pounds. Her normal weight is 110.
She was also heavily drugged and sedated, and has almost no memory of those days.
“All of my friends are in show business, and not one of them bothered to take any pictures of me like that,” she said, laughing. “They told me, ‘We knew you’d be upset, because you’re so vain.’ But, really, everybody thought I was going to die.”
They even brought Jade, then 11, to say goodbye.
Though the doctors weren’t sure she would make it, even with a transplant — the disease could attack her new heart as well, and she was seriously weakened — Kaufman was listed as status 1-A on the transplant list, the highest priority.
After just 10 days on the list, the heart of a 17-year-old boy was helicoptered from Bakersfield to Cedars, and Kaufman underwent transplant surgery on Feb. 21 — her birthday.
She didn’t even know she had been a candidate for the transplant until she woke up from surgery and was told she had a new heart.
“I remember being woken up, and I remembering being surrounded by gazillions of people, and I remember my sister being there. Everybody was saying, ‘You’re a miracle! Just hang in there!’ And my sister said Jade was fine, and then they put me in an induced coma for seven weeks,” Kaufman said.
During those weeks, she remembers looking for the light and looking for her mom, gone five years then, and for her grandparents and her friend Jim.
She remembers people talking to her and hearing music, and she had some terrifying hallucinations. She remembers wondering which was harder — what she was going through, or being in a concentration camp.
And she remembers being pulled back by Jade.
“There was one day where I wanted to let go. Everything seemed so overwhelming and so confusing and so uncomfortable and so painful, I just figured it would be easier to let go. But then my daughter kept pulling me back. I would think about her, and I knew I just couldn’t leave. I knew there was no one that would love her the way I love her and understand her,” she said, breaking down at the memory. “So I made a deal with God. If he would let me be Jade’s mom again, really be her mom, I would spend the rest of my life giving back. I wouldn’t care about how much money I made — just let me be her mother,” Kaufman said.
Just before she woke up, she felt Jade’s breath on her face and sensed the outdoorsy smell of Jade’s hair when she pulled off her riding helmet. She imagined the two of them in a beautiful garden with flowers and waterfalls and women in bright Indian silk dresses.
But it was a different picture when Kaufman woke up.
She couldn’t move. At all.
The dermatomyositis had stripped her once finely tuned body of nearly all muscle.
“I was literally trapped in my body,” Kaufman said.
She had a feeding tube through her nose and was intubated, so she couldn’t talk. She demonstrates how she would lie with her arms pinned at her sides, clicking her tongue to get the attention of a nurse.
It took three weeks to be able to wiggle her fingers.
“When I was lying there like that, I said the serenity prayer like a million times, and I said ‘Shema Yisrael’ 3 million times,” she said.
She was in the intensive care unit for two months, then in the cardiac unit for two weeks and on the inpatient rehab floor for another month. She describes the pain and the indignities of those weeks of not being able to do anything on her own.
“I feel like I went through the worst of old age, and it’s horrible,” Kaufman said.
Top-quality care and a solid support system of friends and family kept her going.
Her friend Linda, about Kaufman’s age but already a grandmother with no kids in the house, gave Jade a home for months, though Jade said she did a fair amount of bouncing around. Kaufman’s sister and brother flew in from New York and took responsibility for medical decisions.
With Kaufman’s personality, it wasn’t long before she had hospital workers hanging out in her room, just for fun. One doctor would time his rounds to end in her room Monday nights so they could watch “24” together. The Jewish chaplain at Cedars came to see her regularly and played the flute for her.
She focused on rebuilding the body she was once so proud of.
“I was grateful that I was given the heart and the gift of life, but I wanted to walk again. I wanted to be a person again,” she said.
Kaufman is convinced her training as a dancer gave her the discipline she needed to do the hard work of rebuilding her muscles. During the ’70s and ’80s, Kaufman had been a backup dancer for Gloria Gainer, Donna Summer and Johnny Hallyday.
She also had some experience with recovery — she was treated for breast cancer in 1996, and had a hip replacement (professional hazard for a dancer) in 2005.
Now, she hoped to work her way up to lifting small weights — but first she had to be able to lift a banana off the counter without dropping it.
“It took me six months to be able to do this,” she said, showing how she would slowly lift off a chair and straighten her legs to push herself up to standing.
As soon as she was able to move on her own, she started making good on her pledge to give back. She got involved in the Donate Life Foundation to become an advocate for organ donation. She made rounds in the cardiac unit, visiting with transplant patients, and then she began meeting with patients at the Cedars Heart Transplant Patient Evaluation Clinic.
At the clinic, pretransplant patients go through a one-day evaluation, where they meet with doctors, social workers and psychiatrists to determine whether they qualify for a transplant. In addition to qualifying medically, those waiting for a transplant need to live — or move to — within 70 miles of the hospital, and they need someone who can take care of them for about three months after surgery. They need to have insurance and not have neared their lifetime maximum, and they need to be able to pay for their medications — usually between $800 and $3,000 a month, which most insurance covers, but often requires a significant copayment.
“We have to conserve our resources, so we know that we’re giving hearts to people who have the resources to care for themselves long term,” said Jenna Rush, who runs the evaluation clinic.
Cedars performed 76 heart transplants last year — more than anywhere else in the world — and has done nearly 700 heart transplants in its 22 years. Status-2 patients, those who are able to live at home while waiting for a heart, wait an average year-and-a-half through Cedars. About 10 to 15 percent of patients die waiting for a heart. Los Angeles, however, offers a fairly good supply of organs because of the size of the region, but the wait in other areas of the country is generally longer.
As part of their evaluation, patients meet with Kaufman.
“Ava can answer questions I can’t answer,” Rush said. “She can identify with patients and help them picture life beyond heart failure. … Sometimes, if patients are having trouble making decisions, they will ask if they can talk to her again.”
It was at the clinic that Kaufman and Rush came up with the idea for Ava’s Heart. They had both seen too many patients die or need second transplants after they stopped taking anti-rejection drugs when insurance fell through, or if they lost Medi-Cal when they went back to work.
The clinic once had an account of $100,000, now depleted, to help people bridge those gaps, and to pay for things like relocation costs to move closer to the hospital.
Kaufman has already completed most of the paper work for Ava’s Heart — she is just waiting for her IRS tax exempt number — and already has several doctors and Rush signed on to be part of her governing board, in addition to some businesspeople and Thomas, the co-author of her book.
Kaufman did some fundraising around the AIDS epidemic, and she plans to start with some of her own friends to seed the program. She has ideas for an Ava’s Heart fashion line, and thinks she can get people to donate salon services to help pamper patients and their caregivers. She hopes to get on the circuit of inspirational speakers.
She is also thinking about her own future.
“I wanted to start a nonprofit to help all these people, but I also had to find a way I was going to make a living. I don’t have to become a multimillionaire again, but I need to support my daughter,” she said.
When Kaufman got sick, her financial situation also began to fail. She and her husband were going through a divorce. The teen-fitness business she had begun to set up before she got sick fell apart.
She had PPO medical insurance through 2009, and then was on Medi-Cal and now is on Medicare, which covers most of her costs. Cedars forgave some of her $4.5 million hospital bill as a charity case, she said.
Her family helped with the rent, first at a Wilshire Boulevard apartment and then at her friend’s ranch in Fillmore. She is now covering rent on her own.
A small settlement from a suit she brought against the dermatologist has also helped.
She learned during her illness that dermatomyositis shows up in the fine print in the waiver she signed when she started getting Restylane injections in 2006 to fill in laugh lines. She was advised that it was futile to sue Restylane, and was equally discouraged from suing her dermatologist, who over four months never took blood work, never sent her to another doctor and never connected the dots to Restylane.
But a state law caps pain and suffering awards at $250,000, and most lawyers didn’t think it would be worth their time. Even after Sands and Associates in Beverly Hills took her case, Kaufman said a judge at the Santa Monica Courthouse told her that doctors always win in Santa Monica. But Kaufman rejected an offer of $20,000 and went to arbitration. She is legally barred from disclosing the settlement amount, but she says it was a modest fixed number that left her with a small sum to set up her nonprofit and work on her book.
The writing process has been therapeutic and helped her get to know herself, she said. She has also taken up ballroom dancing.
“I was a jazz dancer, and I could never do now what I did then. But I’m just so happy that I found some form of movement that fills my soul. When the steps and the music and your body all come together, it is an amazing feeling.”
And she has focused on her relationship with Jade.
“Once I started to get well and was able to be her mother again, we talked about it a long time. She said, ‘It can’t be like it was before, because I’ve been on my own and had to take care of you, and I worry about you every day.’ So it took a while for us to find a balance.”
Three years out, Kaufman said she is finally feeling whole again. Her body is strong, and while dermatomyositis is a chronic disease and can return, she is in remission now and doesn’t spend time worrying. She stays positive and looks only forward.
“The whole thing is so surreal to me, still, that this is where I am in my life. But there is a part of it that is kind of really nice,” she said. “It’s hard to explain — I feel so not like me, but so like me. I guess I kind of feel like me when I was 20 — when you have a whole life ahead of you and you don’t know what is going to happen, and you have these incredible dreams. And I just feel like I’m going to make all these dreams I have come true now.” l
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