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Mother, daughter share need for new kidney

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Everyday life is more difficult these days and the future uncertain for a mother and her daughter who each are in need of a new kidney and in search of donors.

Eileen Sampson, 71, and Teri Sampson, 45, have polycystic kidney disease (PKD). It’s considered a genetic disease, but Eileen said she knows of no one in her family history who had it.

Making their situation more difficult is that their blood types are not common ones — Eileen is B+ and Teri is B-, and Eileen is only eligible for a living donor kidney. Teri could have a cadaveric kidney but the wait list in San Diego is seven to nine years, said Eileen.

“With Teri’s wait list, for her to resume a really standard normal life would be to have a living donor kidney,” said Eileen.

Even living donors who do not match their blood types can be of help, Eileen said, as their name will go into a pool, doctors will look for a match, and her or Teri’s name will then move up the wait list. Expenses are covered by the recipient’s insurance, she said.

While Eileen lives in Ramona, Teri moved out of the community and down the hill to be near her work and the clinic that she had to visit during the day for dialysis.

Teri can now undergo dialysis at home at night while she sleeps, like her mother, but doing so is a set-up process and requires everything to be sterile. The machine she needs and boxes of supplies take up a lot of space.

Despite her situation, Eileen maintains a positive outlook and is thankful for the years that she has been able to spend with family, including her two granddaughters, thanks to a cadaveric kidney transplant she had approximately 19 years ago.

“She is the most tolerant of pain of anyone I have ever met,” said her daughter-in-law, Lynn Sampson.

Eileen discovered her kidney disease about 30 years ago when her mother saw a pay-for blood pressure testing and suggested her daughter check it out because she had hyper-tension.

The testing group took her blood and called the next day, asking her for a re-test.

“There was a slight anomaly,” explained Eileen.

After re-testing, she was sent to a doctor for more testing, and then finally an MRI provided answers.

“My kidneys were full of cysts and were quite enlarged, Eileen said.

She started a regimen for polycystic kidney disease and was put on a transplant list. When the cysts multiplied and shut down her kidneys, she went on hemodialysis, going in three times a week and spending all day for the before and after preparation and hook-up to the dialysis machine.

“At first it was horrible. Extremely painful,” said Eileen. She felt ill, her body cramped, and she could only have one cup of fluid a day.

After nine months of that she was driving home on the freeway and started crying. The experience of being in so much pain and witnessing agony in other people had become too much for her.

“I said, ‘God, I can’t continue doing this. It isn’t going to work.’ I was ready to check out,” Eileen recalled.

Eileen said she cried all the way home but pulled herself together and decided to “grin and bear it.” Unbeknownst to her, fate would step in the next day.

“So this is a Friday and I never wash my hair on Saturday. Never. But I got up and needed a fresh start,” she said.

She woke up early, hopped into the shower around 6:30, washed her hair and had just gotten dressed when her husband, Steve, came rushing up the stairs telling her they had to get to the hospital — there was a donor kidney.

A 17-year-old boy, Levi Hayden, had died in a Denver hospital from massive head trauma after being in a bad traffic accident. His kidney was on the way to San Diego. Because there are a number of elements besides blood type that need to match for a transplant, two other potential recipients were also contacted. One could not arrive in time and the other died at the hospital, Eileen said.

By chance, Doctors Robert and Rafael Mendez, brothers and founders of Mendez National Institute of Transplantation (MNIT), were visiting Sharp Memorial Hospital and performed the transplant.

Eileen also found out that Levi had told his parents the week before the accident that he wanted to be a donor.

“Him and I could not have been a better match than if we had been a direct twin,” she said. “He was my lifesaver.”

She has become close friends with his family, who lives in Kansas, and every year sends flowers to his grave site.

While cadaveric kidneys normally last seven years, Eileen said his has given her 18-1/2 years, and was still functioning, but when she had knee replacement and sepsis set in, the kidney suffered from the stress. She then had to go onto dialysis.

Teri was diagnosed with PKD about 22 years ago and was able to manage it with her doctors until her kidney function plummeted within the last year, forcing her to go on dialysis.

For Teri being 45 years old, Eileen said it’s a big deal “because she’s got her whole life ahead of her.”

The two see the same doctors and nephrologist. Both know they need to stay healthy to be viable for a kidney transplant. A positive attitude also helps.

Eileen said she tries to stay upbeat and let things “roll off my back.”

“Nana has taught us to look at things differently,” said Lynn. “Don’t sweat the small stuff.”

As for the dialysis, Eileen said she can continue as long as her system allows it and stays clean of toxins.

Anyone interested in becoming a donor may contact Eileen at 858-740-7149 or Nana4ak@gmail.com, and Teri at tlsemail71@gmail.com.

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