Flipping the Script on Transplants
Lindsay's Transformative Stem Cell Study
Published April 2016
Lindsay knows a thing or two about transforming herself. An actress, a playwright and an active member of the Chicago live lit community, she believes strongly in the transformative power of storytelling. And one transformation — a breakthrough immune system transplant — would allow Lindsay to keep her everyday just the way it was.
When Lindsay was 19, her mother was diagnosed with polycystic kidney disease, a genetic condition that can lead to kidney failure. With no predisposition in their family, her mother was one of the 10 to 25 percent of cases that occur randomly. Both Lindsay and her sister would learn they too had the disease, and at the time, Lindsay did not think much of it.
She followed her life and interests wherever they led. Lindsay graduated as a theater major and, dissatisfied with the landscape for actresses, started creating her own work, joining theatre companies and writing. Eventually, she ended up teaching creative writing and theater at the University of Illinois at Chicago and, more recently, to female inmates at Lake County Jail.
The symptoms of polycystic kidney disease manifest slowly and can appear as early as your 30s. They are, however, difficult to first identify as warning signs of the disease. For example, one symptom is severe fatigue, and while Lindsay began experiencing that at 35, it was a full decade before she was told to start thinking about finding a kidney donor. She had no trouble doing so; the theater and social work communities are phenomenally giving, and with her young age, many of her peers were devoid of the health problems that often impair older adults from finding a match on their own.
Lindsay’s transplant was scheduled for June 2010 but was delayed when her donor, the husband of one of her very best friends, had a family emergency. As in all good stories, that simple delay turned out to be a serendipitous twist of fate.
At this time, scientists at Northwestern Medicine were organizing a clinical study using a breakthrough procedure that could transplant stem cells from a donor’s bone marrow, essentially transplanting the immune system of the donor into the recipient and eliminating the need for anti-rejection medication. The study required the recipient to undergo an arduous process of chemotherapy and radiation to wipe out his or her own immune system before receiving shots three times a day for four or five days. It would be intense, but potentially life-changing. However, the study had been capped at seven patients.
On July 1, 2010, before Lindsay had a chance to reschedule her June transplant, the Northwestern Medicine team opened up the study to additional patients. Joseph Leventhal, MD, PhD, is a transplant surgeon at Northwestern Memorial Hospital and associate professor of surgery and director of kidney and pancreas transplantation at Northwestern University Feinberg School of Medicine. He was also a co-author on the study and happened to be Lindsay’s physician. On July 2, he called to ask if she was interested in a spot in the study.
Her donor was more than happy to do the extra work, too. Lindsay underwent chemo and radiation and received the required rounds of shots . After all of the extra preparation, Lindsay proceeded with the kidney transplant itself.
“Dr. Leventhal was just so dedicated, and I felt like I was in the right hands. There was nothing he wouldn’t do to make sure this was successful,” Lindsay remembered. “It’s a little scary when you go through a process like that, and it’s pretty intense physically, but I always felt like Dr. Leventhal and the entire Northwestern team was there for me. There was nobody else I would have wanted guiding my care.”
Without the bone marrow stem cell immune system transplant, Lindsay would have had to take multiple anti-rejection pills every day for the rest of her life. Moreover, this type of medication can have serious side effects, like high blood pressure, diabetes, infection, heart disease and cancer as well as a generally weakened immune system. However, because Lindsay has parts of her donor’s immune system, her body accepted the organ as her own and she can live pill-free.
“The conditioning — the chemo and radiation — is pretty intense,” Lindsay continued. “And then recovery is pretty intense. But it has been completely worth it for me because I live like a normal person. It’s like I never had a transplant.”
There is one specific transformation Lindsay says has made a particular impact. Her son was three when she went through the study and even before that point, Lindsay was constantly feeling fatigue. She felt she wasn’t giving enough and couldn’t say yes to all the activities she wanted to. But now, with a new kidney and strong immune system, she has all the energy in the world.
“Now when my son asks me to try something or do something with him, I can just say, ‘Okay!’” Lindsay said. “I just want to be fully present for him. He’s this amazing kid and pretty much everything I do is for him, you know? So, it was so worth it. I’m glad to be able to do everything the study has allowed me to.”