This story was originally published in June. The Lacey woman is still seeking a kidney match.
Staying healthy is the key for Amber Neumann, a Lacey resident who was recently added to the non-living donor list for a kidney transplant.
Neumann, 37, was diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKD) six years ago after a check up from hernia surgery revealed numerous cysts on both of her kidneys.
“I was told to see a nephrologist immediately, which is never a good thing,” she said. “It was quite a shock.”
She had dealt with kidney problems her whole life but nothing serious—numerous bladder infections, kidney reflux as a child.
“It was very difficult to hear as my husband and I had only been married a few years and haven't had any children yet,” Neumann said. “I think I am still coming to terms with everything. It’s very hard to deal with your own mortality in your early 30s.”
When Neumann was diagnosed, only 50 percent of her kidneys were functioning. Now, she’s at 19 percent.
With ADPKD, there is a recessive form found in children, she said. It is the fourth largest cause of kidney disease and more than 600,000 people in the country suffer from the disease.
“Your kidneys fill with cysts until it takes over all function. I currently have over 200 cysts in both kidneys,” she said.
The disease also causes high blood pressure, high cholesterol, high potassium and can lead to heart problems, she said.
ADPKD is a genetic disease but Neumann is a part of the 5 percent that is a genetic mutation since neither of her parents have it.
“If you have it, you have a 50 percent chance of passing it onto your children, which is why we decided not to have kids,” she said.
When Neumann was originally diagnosed, she started seeing a doctor in Toms River. She had gone to the Mayo Clinic, a well-known medical center in Minnesota, twice but it was not financially feasible to continue.
While participating in an annual PKD walk at the Jackson Outlets, Neumann met many who were in the same situation. It was suggested that she go to the Rogosin Institute at the New York Presbyterian Hospital.
“They are amazing. They have a whole wing dedicated to PKD and are on the cutting edge of research,” she said.
But currently, there is no cure for the disease. Neumann goes to the hospital once a month, is on six different medications and has to get blood work in between.
Because of the illness, Neumann gets tired and dehydrated easily, she said.
“It is hard because I get sad a lot,” she said. “It just really sucks that at 37 I have to deal with this.”
But her husband Emil has been by her side through it all, she said. And so has her dog Stella, a Cocker Spaniel-King Charles mix that Emil purchased after her final diagnosis.
“She is definitely a huge part of my illness,” she said. “She knows when I need the extra attention when I am sad and gives me something else to focus on.”
The disease has taken its toll on the family emotionally and financially, she said. Even with insurance, the medications are still expensive. Insurance will cover the cost of her surgery.
“I feel like a failure as a wife and mother that I have done this to my husband,” she said. “We cannot have children naturally and I feel so bad about that.”
The couple looked into other methods of having children but had to put starting a family on hold, Emil Neumann said.
"We were going to adopt," he said. "The week she found out she was going to need a kidney transplant was the week someone chose us for adoption. We did the right thing and said right now's not a good time for us."
Once surgery is scheduled, Neumann will have to go to New York two times a week for six weeks and then one time a week for six more.
If her kidneys are less than 15 percent functional, she’ll have to go on dialysis, which is both scary and draining, she said. Neumann, who is the trainer for the New Jersey, Pennsylvania and Delaware region of TD Bank, would have to go three times a week for four hours to do blood cycles.
“It’s hard because you think you grow up, get married and have children and then realize that may not happen,” she said.
The current wait time in New York for a non-living donor is five years. Neumann has gone on a mission to find herself a donor. Right now, her friends and family can get tested to see if they’re matches.
Neumann found a possible match in her cousin but the outcome is not yet definite and further testing has to be done, Emil Neumann said.
With blood type B, a donor would have to be B or O. The donor and Neumann’s blood would then be combined to see if there is a positive cross match, she said. If there were, the donor would go through a battery of tests to confirm that they are healthy enough to donate.
“They want to take care of the donor just as much as the recipient,” Neumann said.
Potential donors can call Andrea at New York Presbyterian at 212-746-3099.
Information on living donations can be found here.