It wasn't necessarily the surgery or the resulting scars, however, that caused the 46-year-old from Elkhart, Kansas, undue pain or distress. She took all that in stride. It was the process of getting there.
Lanell was diagnosed with polycystic kidney disease — an inherited disorder in which cysts develop in the kidneys causing them to lose function over time. Polycystic kidney disease runs in Lanell's family, and few were spared its consequences. But Lanell's sister, Vicki, eluded the challenges of the disease. That turned out to be fortunate for both siblings.
Vicki, also from Elkhart, became Lanell's kidney donor. Her donation — and the transplant that followed it — changed Lanell's world, which had been fraught with health struggles for three years. Fortunately, she was not alone in her medical odyssey. Eric, her husband and loyal caregiver, describes their journey together as a "long roller-coaster ride."
For some people with polycystic kidney disease, the disorder goes beyond the kidneys. In Lanell's case, her care team discovered she had an enlarged liver covered with many cysts. She was advised to go Mayo Clinic's Rochester campus in July 2015 for an evaluation to see if liver surgery was an option. It wasn't. Lanell did receive some heartening news, though.
"Resection was not possible, but the liver was functioning well," Lanell says. "They told me I was ready for a kidney transplant."
Hearing that, she and Eric chose to travel to Mayo Clinic's Arizona campus for treatment "because of warm weather and the closer drive home to Kansas," Eric says.
A kidney transplant often involves implanting a new kidney while leaving the original kidneys in place. But Lanell's kidneys, which she describes as being the size of footballs, were in such risky condition — as was her large, cystic liver — that no room was left in her abdomen for a new kidney. Surgeons had to remove both her native kidneys, making it essential for her to go on dialysis to stay alive until she could undergo a transplant. Once Lanell was back in Elkhart to heal from the kidney removal surgery, she had to drive 65 miles to the closest dialysis center.
Despite the challenging circumstances, Lanell was glad to be home with Eric and their two teenage children, surrounded by their close-knit community. Located in the far southwest corner of Kansas, Elkhart is small and feels like a family to the Johnsons. "I don't think people who live in large cities can comprehend what it's like to live in Elkhart or other small towns," Eric says. Lanell agrees, adding, "It's nice that everyone knows everyone."
Elkhart's community spirit shone through for the family. Hearing about Lanell's need for a kidney, a number of people offered to be tested to be her donor. The town rallied in other ways as well, holding a benefit dinner and sponsoring activities to defray expenses for Lanell and Eric. "It's incredible how they came to help," Eric says.
Lanell's situation began to look up when it was determined Vicki would be a good match as a kidney donor. But then another obstacle arose. Mayo Clinic's comprehensive donor evaluation process revealed that Vicki had stage zero cervical cancer. The transplant had to wait. After a hysterectomy and a year of monitoring to watch for complications, Vicki was able to donate a kidney to Lanell. The transplant took place on March 20.
The sisters happily celebrated the long-awaited milestone, as did Eric, who confessed that he worried throughout the lengthy process, often waking up at 4 a.m. with a feeling of helplessness. Seeing Lanell restored to good health has been an enormous relief. Eric credits the serenity of the Help in Healing Home at The Village at Mayo Clinic on the campus of Mayo Clinic Hospital in Arizona for making the journey the best that it could be.
Now back in Elkhart with health concerns no longer front and center in their lives, Lanell and Eric are pursuing a long-term dream: turning their love of great food into a business. Their goal is to refurbish an old Victorian house and open a restaurant where they plan to offer a variety of healthy menu items.