In 1968, at age 2, Lori Hartwell’s kidneys became infected. Ten years later, she had to begin regular dialysis treatments in order to live.
“I vividly remember all of it,” said 44-year-old Hartwell in a telephone interview from her home in Glendale, California. “Back then (1978), I felt lousy, had high blood pressure, was retaining fluid, and was taking a handful of medication. I was itching a lot because of high phosphorus levels. I was anemic and couldn’t walk far.”
To get the best care, she and her mother moved from Florida to California. The transition wasn’t easy because Hartwell’s mother was an alcoholic and Hartwell’s growth was being stunted from the kidney disease. (She stands only 4’10” now.) She often felt like she didn’t fit in with peers.
“(Because of the kidney disease) [m]any teachers didn’t think I’d live,” she said. “People didn’t have expectations of me living, so they didn’t talk about such things as my going to college.”
At 24, she received a deceased donor kidney transplant that would radically change her life. Suddenly, she wasn’t “tethered” to dialysis, she said, and felt free. Eventually, in 1993, she founded Renal Support Network and began traveling the world over to share her story.
“I saw people with kidney disease dying of loneliness,” she said. “Your whole identity can change. My network helps patients help patients. What helped me survive was finding people who had gone through what I had who could empathize and give tips on coping. With my nonprofit organization, I try to develop people (with kidney disease) and tell them they’re valuable.”
As for loneliness: Healthy teens, for example, often shy away from befriending teens with kidney disease because of not feeling comfortable facing life and death issues.
The Renal Support Network (rsnhope.org) serves many thousands worldwide and includes a radio show, regular meetings across the nation, a patient-written newsletter, patient speaker program, and one-on-one peer help. Hartwell has spoken to audiences in 40 American states, Canada, and South Africa. She has been married 13 years.
Last March, her donated kidney failed after 22 years, and she once again began dialysis three hours a day/three days a week and has been seeking a donor match. She advised people recently diagnosed: “Hang on to hope, connect with other people going through the illness, and find a good healthcare team.”