Local woman needs new kidney
MIDDLEBURY — In the late stages of a rare kidney disease, Middlebury resident Alison (Allie) Walter has turned to the public to look for a donor.
For four years, Walter, 26, has been quietly treating her IgA Nephropathy, an autoimmune disease that is slowly causing her kidneys to fail. As a junior at St. Lawrence University in upstate New York, she began waking up with migraines and feeling chronic fatigue. School nurses dismissed her symptoms as stress.
After graduation, the symptoms worsened, and Walter was officially diagnosed with the disease she calls IgA. Her doctors estimate that, at the time of her diagnosis, the disease had lived inside of her for 20 years, largely without symptoms and completely untreated.
“I’ve been trying to be optimistic, because after the surgery’s done, I’m going to feel so much better and have so much energy,” Walter says. “But there’s some days where I just can’t believe this is something I have to go through.”
If Walter had learned about her IgA earlier, she could have started the steady regimen of immune-suppressants she’s now taking before the disease progressed, possibly avoiding the transplant altogether.
But her doctors at the University of Vermont Medical Center and the Mayo Clinic in Minnesota say it’s too late for that. In August, Walter’s kidney function fell into the 20th percentile.
“So basically, when you hit 20 percent kidney function, you’re low enough that you can start looking for a transplant,” Walter says.
Walter is looking for a donor with an O+ or O- blood type. This presents a challenge: though O blood types are the most common, types A and B can also accept donor blood types O+ and O-. The reverse is not true; those with O blood types can only receive blood and donor organs from other O donors.
“It limits the pool,” she says, “because everyone’s taking from O’s, but only O’s can get O’s.”
Because of this dilemma, Walter would face a five-year wait for a deceased donor kidney. “That’s way too long in my case,” she says.
According to the National Kidney Foundation, 100,000 people in the United States are seeking a kidney donation at any given time. Of those, 18,000 get transplants, but 4,000 die each year waiting.
Walter’s family members, though eager to donate, do not have matching blood types. Friends with O blood types have come forward, but have not passed initial medical screenings, and would not be cleared for surgery.
“It just hasn’t worked out,” Walter says.
Her family is working to organize a paired donation, in which a family member or friend would donate a kidney to another patient-in-need on behalf of Walter, and Walter would receive a kidney from one of this recipient’s friends or family members. These swaps can be tricky to pull together, though, and Walter wants to secure a kidney as soon as possible.
Walter’s mother, Ellen Walter, the owner of Blue Moon Clothing & Gifts in Brandon, recently posted on Facebook in hopes of finding a donor.
“I’m asking you to please, please consider giving Allie the gift of a healthy life,” she writes. The post has been shared more than 120 times, and has 40 comments from both well-wishers and possible donors who have promised to take a survey to find out if they are eligible.
“It’s amazing that there are so many generous people out there who are just like, ‘Oh, I’m O+, I’ll get evaluated,” Walter says. “It’s been so amazing having that support, especially because my family wants to be able to donate, but can’t, so it’s been really difficult for them. To have people who I don’t necessarily know very well who are willing to come forward is really incredible.”
For the donor, the surgery itself is relatively simple. It’s a low-risk, laparoscopic, ninety-minute procedure with a short recovery time. Walter’s insurance covers all of the donor’s expenses, including travel, the hotel and the procedure.
Donors almost always lead normal lives after surgery, though they are encouraged to avoid contact sports like football, wrestling and martial arts to protect their remaining kidney. According to the National Kidney Foundation, donation does not affect the lifespan of the donor or increase the risk of kidney failure.
Walter is looking forward to surgery, because she knows it will immediately relieve the symptoms that have been weighing on her for years.
“I don’t even remember what it’s like to have a normal kidney, and to have energy,” she says. “For the last four years, I’ve had to put my life on pause. I’ve been staying around home, and having to do a lot of medical stuff, so I’m looking forward to having surgery done so I can go back to school and all that.”
For the moment, Walter is staying positive, and is grateful to the community for all of the love, concern and effort it has already given her.
“You don’t really know how strong and important the community is until something like this happens,” she says.
Those who would like to consider donating can go to mayoclinic.org/livingdonor, and specify ‘Alison Walter’ as the recipient.