Kelli Small didn’t think she would ever get THE CALL, the one that would change her life. Diagnosed with polycystic kidney disease (PKD), Small, 50, is one of the 600,000 Americans diagnosed with this life-threatening genetic condition where noncancerous cysts develop in the kidney. Medications and cyst removal are prescribed but many people with this hereditary disease will one day need a kidney transplant.
“I always knew there was a chance that I would have it, but for a long time I had no symptoms,” said Small, a native of California, Missouri.
A school counselor for 24 years, Small recently retired after seven years with the Jefferson City Public Schools. For most of her life she has watched her mother, Joyce Murphy, 73, deal with complications from the disease, along with her grandfather, uncle and cousins, too, some who died at 49. Murphy was diagnosed when she was 21 after Small’s brother was born.
“I was told not to have any more children but being one who doesn’t follow the doctor’s orders, I had two more children, two girls born a year apart,” Murphy said.
An artist who owned Daisy Doodle in California, Murphy also worked as a legislative aid. She and her husband, Lee, now live in Jefferson City. Over the years her kidney function kept dropping, and in 1988 she had to go through peritoneal dialysis four to five times a day for a year and a half.
“It keeps you going but you’re tired all the time and you don’t feel good and your blood pressure is high, it’s a constant balancing act,” she said.
In 1990, Murphy had her first kidney transplant at the University of Missouri Hospital. That transplant lasted nine years but then her kidney got infected and she underwent hemo dialysis for 10 years. Even so, she and her husband have traveled extensively and she continued to lead an active life.
“My husband has been a saint and is a big part of my support system,” Murphy said. “I can remember dialyzing in the car and motel rooms and even in our boat at the Lake of the Ozarks. I would buy the solution and warm it by sitting the bag in the sun.”
She has had dialysis at clinics in Virginia, Texas, Washington D.C., Alberta and Ontario Canada and Ireland, where the entire family, their children and grandchildren, all visited together.
Murphy, who had a second kidney transplant in 2008, has been a role model for her daughter.
“My mom always had some kind of complication and she never let her PKD slow her down or stop her from living, that’s just who she is. She has always been a good example of how to handle things gracefully,” Small said.
Before the Transplant
Small was 31 years old when she was officially diagnosed with PKD. She and her husband, Chris, both educators, had one son, Tyler, and were expecting their second. After Jacob was born, her blood pressure rose and wouldn’t go down so she was put on medication.
The family has lived in Appleton City, Warrensburg, Grain Valley and New Bloomfield and returned to her hometown in July 2012 to be closer to family.
During these years, her kidney function kept dropping and Small participated in HALT and CRISP studies led by the renowned nephrologist and researcher Jared Grantham, MD, at the University of Kansas Medical Center, KUMC. He founded the Kidney Institute and Division of Nephrology and Hypertension. She’s under the care of Ramesh Khanna, M.D., in Columbia, who also treats her mother.
In the Spring of 2013, Small put her name on the transplant waiting list at KUMC. On average 150 people are added to the nation’s organ transplant waiting list each day—one every 10 minutes.
“You can get on a list when your kidney function is below 20 percent and hopefully before dialysis because that is hard on your kidneys,” she said.
In February of 2015, Small put her name on the list at Barnes-Jewish Hospital in St. Louis, too, hoping that being on two lists might expedite the process. Given her high antibodies, which can result from a blood transfusion or in her case having her two children, she was a “high priority” candidate.
Fighting major fatigue, by August of that year she started really dragging.
“I would work and come home and sleep for three hours, but when I woke up I wouldn’t feel that much better” she said. “I would eat dinner and be back on the couch.” During a family vacation to Steamboat Springs, Colorado, Small slept an entire day during the trip.
Her kidney function continued to bottom out and by November she began undergoing daily dialysis. The pallet of supplies would be delivered monthly to her home and after some training at Dialysis Clinic Inc., a non profit organization in Jefferson City, she began a nighttime cycle. The entire process took 10 hours.
“My husband, sons, siblings and parents were so supportive and Jefferson City schools were wonderful, too.”
Small made it through the school year and retired in May of 2016. A co-worker and friend who had stayed at their lake house and saw what the dialysis process required, even was tested to be a live kidney donor for Small, but she was not a match.
The Call Finally Came
Although it can take two and a half years or longer, she received THE CALL about a kidney on Tuesday, August 17.
“I always figured the call would be from the hospital in Kansas but it ended up being from Barnes and I had only been on their list for eight months,” she said. “My cell phone rang when I was on the road to a Mennonite produce stand in Latham. If I had gone another mile I wouldn’t have had a signal.”
She learned the hospital had a possible kidney for her. “They ask you questions, such as if you’re ill, or have had any kind of infection,” she said.
She met the criterion, she didn’t have a cold or infection and was actively living with her disease. Soon she and Chris were headed to St. Louis as they needed to be checked in five hours after the call.
The United Network for Organ Sharing, UNOS, website describes the process as one where a patient on a list at the transplant hospital adds their medical information into their computer system. Then when a deceased organ donor is identified, UNOS generates a ranked list of transplant candidates or “matches,” based on blood type, tissue type, medical urgency, waiting time, expected benefit, geography and other medical criteria. Organ donation can come from a living donor, a cadaver donor or an anonymous donor.
“Even when you go in you don’t know if the kidney will be a match. All I was told was it’s a young lady’s kidney with a lot of life in it,” she said. “Like my mom during her first transplant, I was not the first candidate but the second person in line for the kidney.”
Within six hours Small was checked in and had gone through tests, including an EKG and a chest X-ray. The social worker, pharmacist and nutritionist stopped by to discuss what to do after the transplant, but all Small kept asking each one of them was, “is this my kidney?”
She received no answer but by 5 a.m. the next morning, a doctor came in for rounds with some news.
“I found out that I had been moved up to the primary candidate for the kidney,” Small said.
Elated, her visit from the surgeon kept her wondering.
“He told us that he could still reject the kidney once I was in the OR on the table, so we still didn’t know what was going to happen,” she said.
Around 11 a.m., she’s wheeled into the OR as they’re harvesting the kidney next door. Still uncertain, she remained calm and when her nurse introduced herself as Faith, Small told her “‘I love your name and she said ‘she’d tell her parents’.”
“I felt that was a sign that it was all going to work out,” she said. “I was on so many prayer lists and our First United Methodist church family has adopted my family and has been so supportive and I felt a lot of comfort from that and my own faith.”
Her whole family was there, too – mom and dad, her sister, Kristie Glenn, and brother, Kevin, who lives at the Lake of the Ozarks. He brought his RV up in the parking lot for them to stay in.
Then the news came that she had received the kidney and the transplant was complete.
“My mom rubbed my hand, telling me, ‘I’m so happy for you.’ She was so surprised by the whole thing, even though she and our family have been through it twice before,” Small said.
Life After the Transplant
Home five days later, Small continues to heal and regain her strength. She checks in with her transplant coordinator at Barnes regularly and will have check ups ahead, but there’s a glow to her skin and her cheeks are rosy again. She recently completed a two and a half mile walk.
Life is good for her and her mother who recently went on a three-week trip to Canada and Nova Scotia. This time her parents traveled with only clothes in their suitcases.
Like her mother, who had been an advocate for various organizations, Small has already spoken at the Mid Missouri Kidney Institute and plans to be an advocate for transplant process.
“I want to clear up some of the unknowns and fears about kidney dialysis and the transplant process and help others as much as I can,” she said.
“I feel such an obligation to talk about the experience and I want to honor the young lady’s family who donated her kidney,” she said.
Even before she learned of her kidney donation, when she put her name on the transplant waiting lists she thought a lot about the family
“I prayed for the family that would ultimately donate a kidney for me. I’ve written the letter I would write to the donor family in my head so many times. Now, I’m so in debt to them.”
With the holidays approaching, she definitely counts her blessings and has much to be thankful for this year.
“There are altruistic organ donors who do this for the love of mankind and that’s just amazing,” she said. “This has been a miracle really and a gift to me and my entire family.”