Editor's Note: Elise Solloway is a correspondent for the Woodward News. She recently received a kidney transplant after fighting a genetic kidney disease. She underwent successful transplant surgery in October and will share her story over the next three issues of the Woodward News.
By Elise Solloway,
A phone call from my sister, Catherine, led to a surprising chain of events in my life.
One evening in July of 2004, Catherine called with family news. She was just diagnosed with Autosomal Dominant Polycystic Kidney and Liver Disease (ADPKD or PKD, ADPLD or PLD).
What is that? Neither of us had ever heard of it. We knew no one in the family with PKD/PLD.
Catherine accidentally found out she had PKD. She had a lump in her lower back that the doctor suspected was a tumor. During a CT scan it was found not to be a tumor but instead it was an enlarged liver covered with fluid-filled cysts. They widened the scan to discover that both of her kidneys were also covered with fluid-filled cysts.
The doctor explained that PKD is a genetically transmitted disease from parent to child and does not skip a generation. Checking our mother’s medical records revealed she had no sign of PKD. Our father died in 1964, when he was 33, so if he did have PKD, it had probably not been diagnosed yet and there were no medical records available for him.
None of my father’s grandparents, parents, aunts, uncles, or cousins had been diagnosed with Polycystic Kidney Disease, and had never needed dialysis or transplants. Multiple generations of family with hypertension, on my father’s side, is the only hint of PKD in the family until my sister was diagnosed.
Catherine was advised to call me so I could be checked to see if I had PKD, too. The next week my doctor had blood drawn for lab work and scheduled an ultrasound of my abdomen. Both revealed that I too had inherited PKD, and I was at Stage 3 so would need to be closely monitored.
After that diagnosis, fear built up within me . . . what if I gave PKD to my son, Jon?? What if his future children inherited PKD? How could I live with that guilt if he and his children got PKD from me?
For the next several years, life went on. Kidney size and condition were monitored at least twice a year for both of us. We each participated in medical research regarding the progression of the disease, and Catherine participated in a trial medication to slow down kidney failure to delay the need for a kidney transplant or to start dialysis.
In 2014, Catherine’s GFR was down to 20 on her lab work. (Normal adult GFR is 60.) This qualified her for referral to Integris Nazih Zuhdi Transplant Institute (NZTI) at Integris Baptist Medical Center in Oklahoma City. Catherine successfully received a kidney from our half-sister, June, in February of 2015.
Three years later lab work revealed that my GFR was down to 20, a sign that I was going to need a kidney transplant or wait a few weeks/months and start dialysis. This led to a chain of events leading me to the NZTI at Baptist Medical Center.
I was put on the NZTI transplant list and a national transplant list after compiling the requested medical records, having a series of medical tests, and meeting with staff at NZTI. Typically, it can take years to find a person with a matching blood type and tissue type who is healthy enough to donate one kidney, or you can await a kidney from a matching deceased donor. While waiting for a new kidney I would be doing dialysis three times a week for 3-to-5 hours a day. I wanted to avoid that any way possible.
After successfully being put on the kidney transplant list, I started the process of aggressively seeking a living donor in order to avoid life on dialysis and waiting years to receive a kidney from someone who died. To accomplish this, I made a simple post on Facebook seeking a living kidney donor. Three to four friends saw my post and volunteered to be a donor and wanted to know what to do.
My next Facebook post gave a simple list of organ donor procedures and it included a list of disqualifying health conditions such as Diabetes, Cancer, high BMI, Heart Disease, and incompatible blood type. Each of the initial volunteers had one or more of these conditions so could not pursue the kidney donation process. I greatly appreciated their thoughtfulness in volunteering to be a donor for me and they will always hold a special place in my heart.
Shortly thereafter, the gift of life was received in a Facebook post I received from a former classmate, Randy Arrington. We had both been in the Woodward High School class of 1975. I hadn’t seen Randy in over 40 years. He informed me that he had zero of the disqualifying health problems, was not on any medications, and wanted to know how he could get tested to see if he could be my living kidney donor.
WOW! What a special gift I received that day!
Over the next few weeks Randy filled out the paperwork, collected his medical records, and made multiple trips to OKC for additional medical testing, and even had a routine colonoscopy. Then, even before I received a phone call from the NZTI, he notified me that the two of us were a perfect match and he could give me one of his two healthy kidneys.
A few days later I received the affirmative call from my pre-transplant nurse at NZTI. The medical team had approved Randy to be my kidney donor and had scheduled the kidney transplant for Monday, October 29, 2018. We were both a blood type match and tissue type match.
Thursday - Preparing for and completion of a successful surgery.