In January of 2000, Debra Gill spoke at an event called “The Spirit of One’s Soul” at the Jewish Community Center. She gave a presentation on her recent surgery; a lifesaving kidney/pancreas transplant that she had received three months earlier.
She shared information on the importance of signing your driver’s license and talking to your family about wanting to be an organ donor upon your death. Gill not only wanted to dispel any misinformation about the process of being a deceased organ donor, but also addressed the halachic (legal) concept of “pikuach nefesh” — the Jewish obligation to save lives, thus allowing the prohibition against deriving benefit from a dead body to be waived when another person’s life is at stake.
She shared her story about being diagnosed with insulin dependent diabetes when she was a first-year law student at UMKC and then, four years later, at the age of 27, doctors telling her that she had unrelated chronic kidney disease. She spoke about being given the “gift of life” from a 42-year-old woman who had died in a car accident. Gill, along with five other people, received organs from this woman, which cured her diabetes and kidney disease. Gill went on to join the board of the National Kidney Foundation of Western Missouri, where she served for six years and during which time she gave many more presentations on the life-saving merits of being an organ donor. She went on to practice law, raise two daughters (Rachel, 21, and Lindsay, 19) and serve on the boards of Temple Kol Ami in Plantation, Florida, and Jewish Federation Women’s Philanthropy in both Broward County, Florida, and Kansas City. What she never expected, however, was to be facing the challenge of needing another organ transplant.
This past summer Gill discovered that her donated kidney was failing. Her initial reaction to the diagnosis was not fear or despair but more shock.
“I had never asked how long the new kidney would last.” she said. “Maybe I didn’t want to know. It had been 17 years and I assumed the kidney would last forever. But soon I knew I had to get down to combating this before it could beat me. When there is something that I can do about a problem, I jump in. Part of having a chronic illness is the feeling of helplessness that you experience. Having gone through this before was both good and bad. I know what’s involved but I also understand how hard it is to find a compatible donor. The most important thing though is that I know I can handle this and get through it.”
Gill is grateful that her transplanted pancreas is still functioning and that she continues to be diabetes free. Although she will always take numerous immunosuppressant medications, she remembers how difficult life was with daily multiple injections and constant blood sugar monitoring that diabetes required.
“I am forever grateful to my donor and her family,” she said.
“I have trouble asking for help,” Gill added. “However, I know how supportive our Jewish community is and what a tremendous resource they are. When The Chronicle called and asked if they could do an article, I thought about how wonderful it would be to not only possibly help me find a donor but to get people talking about organ donation again.”
The difference between now and 17 years ago is Gill needs a “living kidney donation.”
The current waiting time for a kidney transplant from a deceased donor is four to five years; time that Gill does not have. Doctors at Mayo Clinic have advised her that finding a living donor before she must start dialysis is her best hope for a successful outcome. Kidney donations from living donors have several advantages over those from deceased donors. Kidneys from a living donor usually start functioning immediately as opposed to kidneys from a deceased donor, which can take a few hours to a few weeks to start working properly. The wait time for the transplant from a living donor is much shorter (within a few weeks to a few months of finding a match), the surgery can be scheduled at a time that is convenient for the donor and what is going on in their life, and long-term survival rates for both the kidney and the recipient are significantly better.
As for the donor, only one kidney is needed to live a healthy and long life. The donated kidney is removed during a minimally invasive laparoscopic procedure with most donors being discharged from the hospital as early as one to two days later. Most people experience minimal post-surgical pain and are back to work in two weeks. Although any surgical procedure carries risks, data collected from the University of Minnesota and the Social Security Administration show that the risks of live kidney donation are negligible. There is no long-term effect on the health of the donor or their remaining kidney and that the rate of end-stage renal disease, which necessitates dialysis or a kidney transplant, was lower among donors then in the general population. The mortality rate of donors is even less from kidney failure; donors who may need a kidney transplant in the future get priority and are placed on the top of the list. This may be due to the extensive medical evaluation and testing process the donor goes through and during which other medical issues can be uncovered that otherwise might have gone unnoticed. The donor continues to receive excellent follow-up care afterwards as well. All medical expenses are paid for by the recipient’s medical insurance. Perhaps as important, is that the donor and the recipient often experience emotional and psychological benefits from the knowledge that the donation came from a desire to help others.
Gill now considers herself lucky to have had her first transplanted kidney work for as long as it did. The average is approximately 13 years from a deceased donor, as compared to 20 years for a kidney from a living donor. She has always believed that donating your organs upon death is a true act of tikkun olam and she had signed her driver’s license to be an organ donor even before knowing that she would one day be a recipient.
“But it takes a special kind of person to make the decision to donate an organ during their lifetime. They are making a huge sacrifice,” she said. “It amazes me, especially when I hear about a donation to someone who isn’t a family member or close friend. You hear about people donating to a complete stranger. That takes a special kind of altruism that for me, is impossible to understand.”
Gill understands that living donation may not be right for everyone, but she wants people to know that they can still help. She shares her story to help put a face on a topic people often find difficult to speak about. She didn’t even know a transplant recipient before her first surgery.
“Everyone can consider being an organ donor after death,” she says.
Seventeen years after receiving her first transplant, Gill feels that many people are still uncomfortable discussing the topic with their family and continue to believe many misconceptions.
“People are still afraid that doctors won’t try as hard to save them if they know they are an organ donor but that is just not true. The doctors caring for you in an emergency situation aren’t even aware of that fact. It is only after they have done everything they can to save someone’s life and that person is declared brain dead that the issue of organ donation even comes up. There is one person being added to the national transplant waiting list every 10 minutes and 20 people dying each day while waiting for a transplant. One deceased donor can save eight lives. The decision to sign your license shouldn’t be difficult.”
Gill will soon start a blog from her new website entitled, “It’s gonna be OK!” She plans to share her current transplant story with others, as well as offer her perspective and support on other topics she has faced including adoption, divorce and dating after 50, and dealing with addiction in the family, among others.
“I want to share with women who might be going through some of the issues I have faced or am facing today,” Gill said. “I have been through a lot in my life and I think it’s important to reach out to others who are facing difficult times and let them know they are not alone. Nor is any problem insurmountable if it’s faced with humor and the support of friends.”
Her website can be found at itsgonnabeok.net.
To find out more about being a living kidney donor, call the donor transplant coordinator at Mayo Clinic at 866-227-1569. All calls for information can be kept completely confidential