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Date: 8/9/2023
ENFIELD — Natalie Rock is a 19-year-old with a quick wit who enjoys concerts, cooking and spending time with her dogs. She also needs a kidney transplant, and she and her family are doing everything possible to make it happen.
“Sometimes, I’ll joke [with friends] and say things like, ‘Hey, want to give me a kidney?’” Natalie said.
At age 11, a therapist noticed Natalie’s legs were swollen. A pediatrician then found elevated levels of protein in her urine, after which she underwent seven hours of tests at the hospital before a diagnosis was given. Primary membranous nephropathy.
An autoimmune disorder, primary membranous nephropathy triggers the body’s immune system to attack the membranes in the kidney that filter out toxins and waste products. Although the disease is most frequently diagnosed in people over age 40, the Rocks suspects their daughter may have been born with the condition because a cousin on her father’s side of the family has had the same disease since birth.
It can take years before damage to the kidneys becomes apparent. “I was the healthiest kid,” Natalie said. Her mother, Tammy Rock, added, “I could never have imagined we’d be here back then.”
After her diagnosis, Natalie received infusions twice a year during which she was given an eight-hour IV drip of medicine designed to slow down the damage to her kidneys. However, she became allergic to the treatment after about two years.
Natalie’s condition has caused secondary issues including high cholesterol, high blood pressure and elevated levels of potassium in her blood. Her regimen of medicines has changed over the years, but at one point she took 20 pills each day. She has also seen five separate nephrologists and regularly meets with a social worker and care team.
Shortly after turning 18, Natalie was told that her kidneys, which had been functioning at 50% when she was diagnosed, were functioning at 13%. This meant she would need a kidney transplant. Because she was now an adult, her mother was not allowed into the appointment. “I had to hear that news alone,” Natalie said.
A transplant will extend Natalie’s life. However, even if a donor is found, Natalie’s medical journey will not end there. Because her kidney failure is due to an autoimmune disorder, she said it is “probably more likely than not” that her body will attack the new kidney and she will likely have to have another transplant in the future. That said, the medicine she takes to prevent rejection will offer some protection to the new organ.
For now, the low level of kidney function meant Natalie had to begin hemodialysis in May. Three times a week, her blood is taken out of her body and run through a machine that filters waste and toxins, the job her kidneys can no longer perform. The process lasts about four hours. She said, “I’m the youngest one” receiving the treatment at DaVita Palomba Drive Dialysis. “It’s like a second family there. They treat you like you’re family,” she said. Tammy called the nurses and doctors “amazing.”
Natalie will remain on dialysis until a donor kidney can be found. Looking across the room at her mother, Natalie said, “She refuses to admit that dialysis is keeping me alive.” According to the National Kidney Foundation, the average life expectancy for people on dialysis ranges from five to 10 years, although some people have been undergoing the treatment for 20 or more years.
Humans only need one kidney to live, and an organ from a living donor has a better chance of long-term success than a cadaver’s organ. There is always a chance that a body may recognize a transplanted organ as foreign material and reject it. To limit that possibility, the donor and recipient must be the same blood type and, ideally have matching proteins, called antigens. Natalie’s immediate family members have health issues that preclude them from donating one of their kidneys, which leaves her with few options.
The National Kidney Registry was created in 2007 for circumstances such as this. The registry is a database of patients in need of a kidney transplant that matches them with willing donors. It has facilitated more than 7,600 transplants to date.
If a donor is not compatible with the person to whom they want to give their kidney, the registry can match the donor to a waiting recipient who is a match. From there, someone in that person’s life will donate a kidney to a matching recipient and so on, until a match is found for the original patient.
The registry also runs a voucher program to encourage people to donate. If someone gives a kidney, they can designate up to six people and if one of them needs a transplant in the future, they will receive priority.
The average wait time for people on the registry is 5-8 years. Dr. Kenneth McPartland, a surgeon with Kidney Care and Transplant Services of New England and assistant professor of surgery at UMass Chan Medical School – Baystate previously told Reminder Publishing that living that long with a damaged kidney can sometimes make patients too sick to undergo surgery by the time a match is found, lending urgency to finding a match.
So far, just three people have clicked the link on Rock’s National Kidney Registry micro-site to begin the process of being tested for compatibility.
The Rocks have decided to increase the chance of finding a match by running a multi-pronged campaign to raise awareness about Natalie’s search, including a Facebook page, wristbands, vehicle magnets and, perhaps most visible, lawn signs that read “Natalie Needs a Kidney. Be her hero.” The Rocks have given out more than 100 signs, largely paid for with donated funds. The signs have been placed all over Connecticut and Western Massachusetts, and as far away as Minnesota and Florida.
Natalie said the choice to donate an organ is in the prospective donor’s hands and there is no pressure to donate. If someone decides to donate, they will have their own care team, and all financial costs are covered by Rock’s insurance. Even so, Tammy said, “It’s hard to ask that question. It’s a commitment on that donor.” She said there is paperwork, testing and meetings with a social worker, all before the transplant can take place. “Obviously, every surgery has its risks,” Natalie added.
“Living donation is very important,” Natalie said. “There’s people younger than me. There could be a little girl out there or a little boy. It’s not just them, it’s their family. You’re saving their child.”
The Facebook group, A Kidney for Natalie, can be found at tinyurl.com/mr3t2e3w.
Natalie’s page on the National Kidney Registry’s website is at nkr.org/RPK459.
For more information on kidney donation and the National Kidney Registry, visit kidneyregistry.org.