Healthy kidneys have never been something Linda Miller has taken for granted.
The 59-year old Mahomet resident, is the fourth generation to have polycystic kidney disease.
Polycystic kidney disease is an inherited disorder in which clusters of cysts develop primarily within the kidneys, causing the kidneys to enlarge and lose function over time.
After watching her grandmother die of uremic poisoning at the age of 50, the same fate of her great-grandmother, and caring for her mother through 17 years of dialysis, Miller is now turning to her lifelong friends and neighbors as she looks for a living kidney donor.
Miller has known that cysts were growing on her kidneys since she was 18 years old.
“It’s kind of like you know there is a freight train coming, but you just don’t know when it’s going to hit,” she said.
More than 40 years later, with large kidneys full of cysts, Miller currently has 17-percent kidney function.
“At about 12 to 10 percent (kidney function), you feel so bad you go on dialysis,” Miller said. “It’s not an exact science, but I have about six months to a year. It’s going to happen in my near future, and so that’s why I’m reaching out now.”
Miller has been placed on the kidney transplant list at Barnes-Jewish Hospital. That wait can be 5 to 10 years, depending on the recipient’s rank on the list.
“With a deceased donor, you can last 5 to 10 years (with the kidney) if you’re lucky,” she said. “If you can get a living donor and have never been on dialysis, you can last 15-30 years. So, at my age, that would probably take me to the end of my life.”
Other benefits of getting a kidney from a living donor is that the kidney starts to work immediately.
“Believe me, I’m a compliant person and I will take care of the kidney,” she said.
Miller said that despite her disease, she has been working hard to take care of her body for years. She eats well and exercises daily.
She also participated in the tolvaptan trial, a drug approved in April of 2018 to suppress the rapid development of cysts on the kidneys, prolonging kidney function.
“The transplant guy called to tell me I made the list he said, ‘Oh my gosh, you’re a great transplant candidate. We don’t get people like you very often.’ “
Knowing how dialysis changed the quality of life her mother experienced, Miller hopes that by receiving a kidney from a living donor, she will be able to continue to live her active life that includes spending time with her family, including her two granddaughters.
The living donation process takes about two to six months. It begins with a phone call to Barnes Jewish Hospital (314-362-5365), where the donor will answer some brief medical questions before the hospital sends donation information to read.
Once the process begins, the donor will have routine blood work done, then, if a match, will go through an extensive health evaluation at Barnes Jewish Hospital.
All medical costs associated with the kidney transplant will be covered under the recipient’s medical insurance.
Donors cannot have diabetes, have had gestational diabetes, high blood pressure, multiple episodes of kidney stones, kidney disease or a body mass index over 35.
Miller also needs a donor who is blood type O.
For donors, the procedure is done robotically with five small incisions. The recovery time is also minimal, with the donor being released from the hospital as soon as the next day.
The donor’s life will be altered in that they will no longer be able to participate in contact sports and will not be able to take INSAID medication (such as Advil or Alieve) anymore.
Donors cannot receive compensation for the organ, and have the ability to back out at any time.
“It’s a very personal thing, and to give up an organ is a huge gift,” Miller said.
Miller, who has been a nurse at the Carle Cancer Center for years, said she wants to continue giving to others.
“I’ve served other people, I’ve served my family, and I’ve had a great life. But I’d like it to be great for a lot longer. I’m going to be 60 in May, but that’s not that old; I still have a lot of work to do.”
To begin the process of kidney donation, call Barnes Jewish Hospital kidney center at 314-362-5365. Miller’s donor number is 52358.
