If you’ve watched “House” or “Grey’s Anatomy,” you might have the wrong impression about organ and bone marrow donations. No, doctors aren’t running to the hospital roof to grab a heart in a cooler from a helicopter pilot. In real life, the procedures are calm and methodical—and more safe and successful than ever. Every year, thousands of patients’ lives are saved by both living and deceased donors, but, unfortunately, there’s still a wide gap between how many people need organs and how many organs become available. Some die waiting, while others live to tell the tale of the gifts they were given.
Lisa and Michele
In 2005, as a mitzvah, or good deed, Lisa Rostaing hurried to the bone marrow registry booth at her temple, swabbed the inside of her cheek with a Q-tip and provided contact information to enter a national bone marrow registry. “It took about 30 seconds,” says Lisa, a youth director at Temple Isaiah in Los Angeles. “I figured, I can’t cure cancer, but maybe I can save somebody’s life.” Years passed.
In Baltimore, in 2008, three weeks after getting engaged, Michele Bresnick Walsh was diagnosed with a form of blood cancer known as acute myelogenous leukemia, or AML. Michele, who practices business law, was 38. Because AML progresses rapidly, she started chemotherapy immediately, but her FLT3 gene mutation meant that her only real hope for survival was a bone marrow transplant.
To find a suitable marrow match, doctors compare 10 genetic markers. Even though they look first to the family for marrow donations, only about 30 percent of patients find a compatible donor there; the other 70 percent have to rely on the kindness of strangers. “My sister wasn’t a match,” says Michele, “so we had to turn to the national registry.”
Back in Los Angeles, Lisa got the call in November more than three years after her cheek-swab. The best matches often come from within the same ethnic group, and Lisa and Michele are both from families that trace back to Eastern Europe. They were a 10 out of 10 match. Lisa was urged to think very seriously about the decision to donate marrow. “But I felt strongly about going through with it, whatever it was,” she says. She had several rounds of blood work, filled out packets of health forms, banked a pint of blood for her own use post-surgery, and had a complete physical with EKG, all in Los Angeles.
By March 2009, Michele and Lisa were both ready, and Lisa was flown out to the East Coast. For the procedure, Lisa chose general anesthesia over an epidural. The surgeon made small incisions and pushed a needle into both of her hip bones and extracted thick, liquid marrow through the needle in a process known as bone marrow harvesting. She had the surgery at 6 a.m. on a Friday, spent the night in a hotel paid for by the Gift of Life Bone Marrow Foundation and flew home Saturday afternoon with very little pain.
“There was no scarring,” she says. “It was not a walk in the park, but my attitude was this is 24 hours of discomfort to save someone’s life.” Michele’s health returned, she got married and this year celebrated her fifth year of remission.
Identities of donors are kept confidential for as long as the donors wish, but eventually Michele and Lisa met. “It was so emotional,” says Michele. “I was bawling.” The two became fast friends and now meet up or take a vacation together once a year—including a getaway to the Bahamas.
Michele is very active in There Goes My Hero—a nonprofit founded by Erik Sauer, another leukemia survivor—which provides meals for patients receiving treatment, funds research and holds bone marrow drives to add as many people to the national registry as possible. (There’s currently an urgent need for non-white people to enter the registry.)
The American Cancer Society says that serious complications for donors are rare. “Some people think the procedure is invasive, like on that episode of ‘House,’ ” says Michele. “But the majority say it’s not that painful.”
Five years ago, Marty Maren, a 56-year-old sales representative, woke up feeling very ill. His wife insisted he go to the hospital, and by the end of the day he was on life support. His liver was failing, and his only chance for survival was a transplant.
“Who gets to the top of the wait list is determined by how critical the patient is,” says Andrew Cameron, MD, PhD, surgical director of liver transplantation at Johns Hopkins Hospital and Marty’s doctor. “People at death’s door get better placement.”
Four days after Marty was admitted, Dr. Cameron attempted a transplant with a liver from a deceased donor in Pittsburgh, but Marty was too sick to receive it. Dr. Cameron passed that liver on to the next person on the list and removed Marty’s dead liver. There was no other option now—without a liver, he would die in a few days. Then a young man died in St. Louis, and it was his liver that Dr. Cameron successfully transplanted into Marty.
“My life was saved by my wife, by Dr. Cameron and by Saint Rita, the patron saint of the impossible—and of course by my donor,” says Marty.
Six months after his surgery, he wrote a letter to the family of his young donor, but got no response. “This is the worst time in their lives,” says Marty. “I didn’t want to push.” In 2013, Marty and his wife, Michele Gregory-Maren, co-founded the Maryland chapter of Transplant Recipients International Organization, or TRIO, a support group for the transplant community that provides free education and advocacy. This month, Marty celebrates the five-year anniversary of his transplant, and he’ll try again to contact the donor family.
Although there have been great advances in “living liver transplants,” in which a living donor gives part of his or her liver to the recipient, most patients need a liver from a deceased donor. “Every year, 20,000 people are on the liver transplant list, and 7,000 become available,” says Dr. Cameron. “Organs are a limited resource, and we’re good shepherds of them, but people die waiting.”
In February of this year, Suemi Smith received two kidneys from a deceased donor. Age 30 and married, with a 7-year-old daughter, she’d been on dialysis for almost three years following acute kidney failure that came on the heels of lupus. When she got the call at work, she broke down in tears. The next morning, she received a transplant of two kidneys. Nine months later, she’s living a new chapter in her life. “I’ve been feeling very good,” she says.
When Suemi asked her doctors about her donor, all they could tell her was that her donor was a child. Because Suemi is petite, her team decided that a transplant of two kidneys from a child would be successful. “Being a mother, I can’t imagine having to bear losing a child,” she says. “I’ve thought about reaching out to the family, but it’s a very delicate situation. I know there’s no comfort when you lose a child, but I’d like them to know how much their gift has helped me.”
Andy and Meagan
When she was a sophomore at Loyola University in Baltimore, Meagan O’Neill became sick with a blood disease so rare that there’s no name for it. With several months in the ICU, plasma treatment and blood transfusions, she made a fullrecovery—except for her kidneys. After a year of dialysis, it became clear that she needed a kidney, and her mother’s brother, Andy Nestler, age 49, was the healthiest match.
“When he learned that he was the best match, he didn’t even think twice,” says Meagan. In September 2007, she and her uncle went to the hospital together for the transplant; they checked in on Thursday, and left the hospital together on Sunday. Andy was back at work two weeks later, and Meagan, whose health improved immediately, was able to return to school the next semester.
A designated donor since she was 17, Meagan works at the Living Legacy Foundation of Maryland, which provides help to the families of deceased donors in the form of support groups, workshops and memorial services, all free.
“People have misconceptions about what it means to be a designated donor,” says Meagan. “The way it’s portrayed on ‘Grey’s Anatomy’ is very upsetting and untrue. With donation, there’s no running around.” Designated donors receive exactly the same medical care as those who are not designated, and through the entire donation process, the body is treated with care, dignity and respect.
In Maryland, the percentage of people who check “yes” to being an organ donor on the driver’s license application or renewal is about 46 percent. Baltimore’s designation rate is the lowest in the state, at about 32 percent. (Compare this to Worcester County, with a rate of 56 percent.) “I’m kind of amazed at how many people are not designated,” says Meagan. “Your chance of needing an organ is much, much higher than your chance of being a donor.”
Leslie and Kai
This year, Leslie Kriewald, a teacher at Baltimore City College, donated one of her kidneys to a former student. Kai Dambach, 22 years old, was born with a congenital birth defect that wears out his kidneys—and he had already received a kidney each from his parents. Over the years, Leslie had become friendly with Kai’s mother, running into her here and there around the city. “Last winter she told me her son was getting sicker and needed another kidney,” says Leslie. In April, Leslie was tested to see if she could help. “If it was my kid, I’d hope someone would step forward.”
“There was a lot of testing, extensive blood work, a psych evaluation, a cardio test, a CAT scan,” she adds. In the end, the tests determined that she was a perfect blood and tissue match, and that she was healthy enough to donate. “For me it was an easy decision. Once I knew I was healthy enough to do it, it was a no-brainer.”
In August, at age 59, Leslie had one kidney removed and returned to work the following week. “I don’t recommend going back to work one week later, but it was fine,” she says. She had surgery on a Tuesday and was home on Thursday. “The pain was minimal, and I had a great support team.”
Leslie continues to be amazed by the gratitude she gets from the recipient and his family. “It continues to blow me away,” she says. “One of my biggest realizations was that, at the end of the day, it’s really easy to do good things for other people.”
How can you help save a life?
– Say ‘yes’ to organ, eye and tissue donation at the MVA. Or register immediately online at donatelifemaryland.org.
– Get your cheek swabbed for a bone marrow registry. Visit BeTheMatch.org to find a registry drive near you.
– Talk with your employer, congregation or school about hosting a bone marrow registry event, especially if you can reach non-white populations, where the need is greatest.
– Get a Donate Life license plate to spread the message.
– Make a financial donation to organizations that provide support for transplant patients and donor families, such as Gift of Life Bone Marrow Foundation, the Living Legacy Foundation of Maryland, There Goes My Hero and TRIO of Maryland.