Local nurse has hereditary disease
Lisa Wilson hoping to find a live donor.
Every night before she goes to bed, Lisa Wilson hooks up a machine and a bag of special fluid and inserts a tube through a small hole in her abdomen.
As she sleeps, the dialysis machine removes urea and salt from her body in the form of urine.After two years, the 49-year-old mother of four, has become accustomed to the process and can sleep through the night most of the time.
“I just can’t sleep on my stomach,” Lisa said.
Twenty years ago, Wilson found out she had inherited polycystic kidney disease from her mother, who died at age 52 following a kidney transplant her body rejected.
“They were still experimenting with transplants at the time,” Wilson said.
The disease, Lisa explained, is when cysts grow on kidneys and take over healthy tissue. People with the disease then go into kidney failure and die without a way to filter impurities from their bodies.
But Lisa cannot stay on dialysis forever.
Last spring, the process was started to find a suitable kidney donor.
About half of the kidneys transplanted at The Nebraska Medical Center are from people who have already died while half are from living donors, according to Connie Lykke, who is a certified clinical transplant coordinator at the center.
Lykke said kidneys from live donors are preferred. National Kidney Foundation officials say that most people with a single normal kidney have few or no problems, particularly in the first few years.
During a live transplant, Lykke said kidneys from living donors are out of the body for a shorter time than from a brain-dead donor, surgery time is planned versus unplanned, and life expectancy of the kidney is increased.
Rejection of a living kidney happens less, she said, because chemicals are released from the brain during death, medications are in the body and/or trauma has occurred from accidents.
As a result, Lykke said the kidney from a cadaver can be inflamed which increases chances of rejection.
Once Lisa was put on the transplant list, she said a relative and several friends were tested.
Her husband, Matt, looked like a perfect match in terms of blood type and other requirements until it was discovered that his father was pre-diabetic.
“They are so particular,” Lisa said, noting that strict requirements are necessary so recipients receive the best chance of getting a healthy kidney.
Still, she wants to wait for the right one.
“I’m okay with that because I have a strong faith,” she said. “It’s helped me cope with this. The Lord is going to take care of me.”
Nonetheless, she faces challenges.
One of the biggest is knowing that her son, Dane, has been diagnosed with the disease.
A ray of hope in his case, however, is a new medicine in the trial stage that slows down the progression of cysts.
She noted that one of her two brothers has the disease and recently received a kidney from a daughter.
Because of dialysis and her dependence on the machine, Lisa cannot take baths or sit in hot tubs because of risk of infection from the hole in her stomach.
It’s also difficult to travel for a period of time because of the dialysis equipment she has to cart with her.
These days, the disease also causes fatigue. She now works part-time as a nurse in the cardiac rehabilitation department at Gothenburg Memorial Hospital.
“I’d like to have more energy and go places at the drop of a hat,” Lisa said.
In the meantime, she and a family member drive to Omaha once a month where a medical team assesses results from her blood draws and discusses her medical situation.
She’s been told that dialysis should continue to work for 10 to 12 years.
“This is it for the rest of my life if I can’t find a kidney,” Lisa said.
Once dialysis is not effective anymore is not something she dwells upon.
“I have to appreciate every day.”
Editor’s note: Read about what it’s like to donate a kidney in the Aug. 31 issue of The Times.
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