She's fighting for her life: Longtime nurse, Mahomet resident in search of kidney donor

Putting others' needs before her own, Linda Miller has been a nurse for 40 years. Caring for the lives of many, the Carle Cancer Center employee has assisted numerous patients over the years and now turns to her community for help.

"My current kidney functioning has 17 percent left — that's it," Miller said.

Diagnosed with polycystic kidney disease (PKD), Miller is the fourth generation in her family to have it.

"My great-grandmother had it and went into uremic poisoning and died. My grandmother went into uremic poisoning and died when she was about 50. Then they had no dialysis and they didn't really have good blood pressure medicines and things like that," she explained. "She (her mother) went into failure about the same time as I am now and she was on dialysis for 17 years."

Miller cared for her mother and took her into her own home for the last eight months of her life. She also recalled assisting at least three patients with PKD during her nursing career.

"Polycystic kidney disease is a disease where your kidneys have many cysts," Miller said. "So what happens is 50 percent of the people who have it never go into failure. The other 50 percent have a worse time or a more aggressive type that goes into failure."

Miller learned of her PKD at the age of 18. With both kidneys affected, Miller said she now has 20 pounds of cysts in her kidneys.

"It's kind of like you know there's a freight train comin'," she said, "but you just don't know when it's going to hit."

Miller will soon be faced with dialysis treatment to prolong her life. Dialysis treatment utilizes a machine or a filtering system to remove toxins from the blood.

"It's (dialysis) either every other day or daily," Miller said. "So it really limits you and compromises your quality of life as far as travel and being active. It wears you out and affects all of the other organs in your body."

Witnessing her mother undergo dialysis and complications from the treatment, including surgery, Miller knew she had to incorporate an active, healthy lifestyle. In fact, many community members may recognize Miller from her seemingly religious, daily 4-mile walks around Lake of the Woods over the years.

"People will say, 'Oh, you're the one who walks!'" Miller said. "I've tried to make healthy choices as much as I can. I'm not perfect, of course."

Miller's health remains important to her as she now turns to the community in search of a kidney donor. Since January, Miller has been on the Barnes-Jewish Transplant Center's (St. Louis) transplant list.

"The wait time is five to 10 years," she said.

At 17 percent kidney function, Miller is in dire need of an organ donation. With more than 5,000 people awaiting a kidney transplant, according to the National Kidney Foundation of Illinois, Miller would be grateful for any donation, regardless of a deceased or living donor; however, she expressed the variances of quality of life between the donations.

"A deceased donor can last maybe five to 10 years, if you're lucky," she said. "If you can get a living donor and never have been on dialysis, you can last for 15 to 30 years, so at my age, that would probably take me to the rest of my life."

With her daughters living nearby and a picture her grandchild drew placed in her living room, it's easy to understand Miller's plea for a prolonged life.

"At 10 percent (kidney function), you usually feel so bad you go on dialysis, so I'm getting close. It could be — this is not an exact science — six months, it could be a year. I don't think it will be much longer than a year," Miller said. "It's going to happen in my near future so that's why I'm reaching out now."

The best-case scenario for Miller would be to find a donor before she requires dialysis treatment.

Miller reassured the donation process has changed to a speedy recovery as the procedure is now done robotically.

"There's five small incisions usually," she said. "The recovery for the donor is much quicker than the traditional big line. Usually, the donors are in the hospital overnight and they go home the next day."

After making the generous decision, the donor must meet a set of requirements for a successful transplant. A donor cannot have high blood pressure, multiple episodes of kidney stones, a history of kidney disease, BMI over 35, diabetes or have had gestational diabetes. The donor most also have an O positive or O negative blood type to match Miller's blood type.

"Those are the first things that's going to knock somebody out of donation," she said.

Aside from medical requirements, the key for a successful transplant is to ensure the donor has his or her heart in the right place.

"It is illegal to have any money exchanged for an organ," Miller said.

All testing and medical costs for the donation, however, are covered through the recipients' insurance.

The donation process begins when an interested donor contacts the transplant center and requests to be tested. The interested donor is sent a packet of information concerning the kidney donation to read.

The next step would be a blood test to match the donor's blood against Miller's. Should the donor match, then he or she would visit the transplant center to undergo further testing.

"They check for everything — for infection and cancer and all sorts of things," Miller said. "It's usually one big long day of testing to make sure there's no indications for that patient to not give the kidney."

If the individual is confirmed as a match, and if he or she remains willing to donate the organ, then the transplant would be scheduled.

"It's not a fast process," Miller said. "It can take two to six months. Many people wait 10 years on the list. They're waiting on dialysis to get a kidney."

Hoping to highlight the minimal impact for the donor, Miller reassured his or her quality of life would not diminish from the generous donation.

"A person only needs one kidney to live," she said. "A friend of mine's husband donated his kidney to his sister when he was 18 years old and he's 64 years old now and he's fine. But there's no guarantees in life."

After the transplant, two restrictions remain for the donor. The first being the inability to take nonsteroidal, anti-inflammatory drugs (NSAIDS) again, such as Advil or Alieve.

"There are other ways to manage pain," Miller said, "other drugs like Tylenol."

The inability to participate in contact sports is the second.

Understanding the enormity of the donor's generosity, Miller reassured organ donation isn't an easy decision and shouldn't be taken halfheartedly. She reassured an interested donor may back out of the decision at any time.

"I certainly would never pressure anyone," she said. "It's a very personal thing. To give up an organ is a huge gift, which I certainly understand. I would never hold it against somebody if they changed their mind."

Nearing 60, Miller isn't one to let PKD stop her from living her life to the fullest and continuing to serve others in her role as a nurse.

"I have a lot of work left to do," she said. "I've served other people. I've served my family. I've had a great life, but I'd like it to be great for a while longer."

Those interested in learning more about becoming a kidney donor for Miller may call Barnes' transplant center at 314-362-5365 or contact her personally at 217-369-7889.

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