New kidney exchange program at MUSC is giving hope to a neuroblastoma survivor facing her next big challenge
Dana Rothschild, a 45-year-old mother of two, has been strong and stoic during the trials and tribulations of a life plagued by health problems, all stemming from having survived childhood cancer, neuroblastoma, at age 4.
How to help
If you are interested in being a living donor for Dana Rothschild or anyone in need of a kidney, contact the Medical University of South Carolina’s Living Donor Transplant Program by calling 800-277-8687 and selecting option 4, then option 3. Mention that you are calling for Rothschild, or any other specific recipient. Or go to http://tinyurl/a7hm8m7 to fill out a form online and submit it by email.
Testing to be a potential donor involves a blood test at no cost to the donor.
For information on being a living kidney donor, go to www. kidneyregistry.org.
And for more on the organ donor program in South Carolina, go to www.lifepoint-sc.org.
But now she’s facing her biggest challenge since beating the odds four decades ago.
Kidney donation: Myths v. facts
Myth: A kidney donor will have to take medications for the rest of their life.
Fact: A kidney donor will be given prescriptions for pain medication and stool softeners at discharge from the hospital. These are only for the immediate post-operative period; after that time, a donor does not have to take medication.
Myth: A kidney donor will have debilitating pain for an extended period of time.
Fact: A kidney donor will have some pain after surgery from both the incisions and related to gas and bloating. This pain will diminish in the days following surgery and can be controlled with pain medication if necessary.
Myth: A kidney donor will be on bed rest following surgery.
Fact: A kidney donor will be out of bed and walking independently before discharge from the hospital.
Myth: A kidney donor will be in the hospital for an extended period of time after surgery.
Fact: A kidney donor will be hospitalized for two nights (i.e., if surgery is on a Tuesday, the donor will typically be discharged on Thursday).
Myth: A kidney donor can no longer participate in sports or exercise.
Fact: A kidney donor should be able to return to regular activities and exercise at 4-6 weeks following surgery.
Following months of fatigue this summer, a routine exam in October showed that she was in end-stage renal failure. The partial kidney left following her childhood surgery was shutting down. She would need a kidney transplant and/or go on dialysis.
Initially, she was confident— between her family and an outpouring of support from the Charleston community — that she would find a suitable donor.
However, because of all her surgeries, including an aortic bypass eight years ago, and blood transfusions over the years, Rothschild’s antibodies are supercharged and have attacked the blood of every potential donor to date.
“This has really taken me for a loop,” says Rothschild, trying to hold back tears. “I’m not an alarmist and I have always taken things, medically, in stride, but this is different. ... I’m very, very discouraged because it doesn’t look like I’m going to have a kidney anytime soon.”
And yet her odds of getting one have improved due to the fact that the Medical University of South Carolina Transplant Center, starting Tuesday, is joining the National Kidney Registry’s living donor exchange program.
The exchange taps into the innovations of computer matching, surgical techniques and organ shipping to secure kidneys from live donors. Those transplants typically have better outcomes than those taken from the recently deceased.
Dr. Titte Srinivas, a nephrologist who recently relocated to MUSC from the Cleveland Clinic, is a firm believer in the live donor exchange and said it will be critical in improving the chances of Rothschild getting a kidney.
“By increasing the pool of donors, exchange programs have helped negate the need for conditioning regimens,” says Srinivas, describing complicated treatments to tamp down antibodies so that a kidney recipient will accept the tissue.
Srinivas stressed, however, that neither he nor any other physcians are involved in soliciting kidneys for Rothschild or other people in need of one.
In Rothschild’s case, the exchange will expand her pool of potential donors nationally if a friend, who is a good candidate to donate a kidney but isn’t a match for her, will commit to donating a kidney.
That person is Lynn Hunsinger, who has been friends with Rothschild since middle school.
“I’m her ticket,” says Hunsinger, a teacher at Orange Grove Charter Elementary School. “If it’s what I can do to keep her alive, it wasn’t a question (to donate a kidney). The decision was already made in my mind.”
Hunsinger understood the circumstances when Rothschild “dropped the bomb” earlier this fall.
“She (Dana) has always been a little secretive about things (health problems), so when she came straight out and told me, I knew it was serious. I knew it was dire.”
The domino effect
While many think of organ transplants, they conjure donations from those who have died in traffic accidents.
The live donor exchange, however, is increasing the options for some of the nearly 95,000 Americans waiting for kidney transplants.
The registry made national news in February when one donor – for just altruistic reasons – donated a kidney and set off a “chain” of 30 kidneys involving 60 people in operations in 17 hospitals in 11 states.
According to The New York Times, pioneering transplant surgeon Dr. Robert A. Montgomery, who was not involved in the chain, described it as a “momentous feat” demonstrating the power of kidney exchanges.
“We are realizing the dream of extending the miracle of transplantation to thousands of additional patients each year,” Montgomery told the Times.
Giving to a giver
Rothschild is no stranger to the Charleston health care community.
Largely as a result of her childhood experience, she pursued a career in helping medically challenged children — first in working with children in hospitals before and after major medical procedures.
Eventually, her calling led her to a degree in occupational therapy and a private practice, Pediatric Therapy Associates, specializing in adaptive aquatics for children with special needs.
“I think I have a lot of compassion for kids,” says Rothschild. “I think I’ve developed a lot of compassion and understanding of how traumatic it is. And now that I have children, I know how devastating it must be to go through something like this at any age.”
Rothschild’s mother, Faye Siegel, has been her biggest advocate throughout her life and especially the past two months.
“You know, the situation is what it is. I feel like we are so blessed and so lucky to have all these people stepping up. Friends, family and strangers stepping up to be a donor for her. We have a wonderful community. We have the best doctors,” says Siegel.
“In the worst situation, we’re in the best situation. I feel very, very blessed. I’m a tiger and she’s my cub and I’m going to do whatever I can to save her.”