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Lacey Woman on a Mission to Find a Kidney

Amber Neumann is on New York's non-living donor list for a kidney transplant but the wait is five years

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.

Kathryn M. June 22, 2012 at 01:42 PM
Amber is a dear friend and sweetheart. Her strength through all of this is commendable and amazes me.
Jennifer L. June 22, 2012 at 02:09 PM
Amber is my best friend and from the first day she was diagnosed she has been so strong. What has been amazing throughout this whole process is the kindness of strangers and how supportive Amber's extended family has been. It does prove that there is still some kindness in this very selfish world.
Dmcg June 22, 2012 at 03:35 PM
My heart goes out to her. My sister is going through the same thing but her kidneys were removed 4 years ago. It is so sad nothing can be done faster to help these two ladies. Best of luck and god bless.
Janis Friedman June 22, 2012 at 04:20 PM
Amber- Sign up with University of Philadelphia as well as NY and there is also RWJ in New Brunswick. The more lists your on, the better the chances. My boyfriend had been on RWJ list for almost 3 yrs, signed up with Philly and received his kidney transplant 4 months ago after only being on the list for months. Best of Luck. Praying for you and all who need.
Alda June 22, 2012 at 04:59 PM
When I read this story is brought tears to my eyes..I also live in Lacey and am also living with this disease and so is my 3 year old son.. He has to go to the nephrologist every 3 months and has to have blood work and other tests done to make sure the kidneys are functioning ok.. My prayers go out to her and her family.. I wish I could meet Amber her story hits home and one day we can be in her shoes with needing a Kidney transplant I hope she finds a match really soon.. Best of luck and God Bless her and her family
Amber Neumann June 22, 2012 at 05:13 PM
You reall should check out the Rogosin institute in NYC. My dr is Jon blumenfeld. Good luck to both of you. There is also a walk every year. If you go to pkdcure.org you can find more information. I participate every year
Alda June 22, 2012 at 05:25 PM
My son sees Dr. Weiss at RWJ.. I will check out the Rogosin institute in NYC.. Thanks for the info.. I really appreciate it.
martin sullivan June 26, 2012 at 04:27 AM
amber my best thoughts go out for you to find a match
Amber Neumann July 01, 2012 at 11:26 PM
thank you Martin
billy jones August 11, 2012 at 06:16 PM
I wish you the very best. Maybe a voluntary swab to find a match.
Amber Neumann August 23, 2012 at 12:37 AM
Please keep sharing my story. Thank you
Sandy Bator August 31, 2012 at 03:25 PM
Amber My thoughts and prayers to you and Emil and your family. I hope you find a donor soon. I will be praying that you do.
diane November 23, 2012 at 12:20 PM
Amber God Bless you, and pray you find a match. Will include you in my prayers to St Jude. You will find a kidney!
Nefretiri5 December 23, 2012 at 04:59 PM
Amber, thoughts and prayers are with you that you find a match. I wish I could help in some way. Such a helpless feeling. Nothing but positive thoughts. God Bless.
deidre December 24, 2012 at 01:39 AM
amber, you dont know me but i live in the next town over and just happened to read this article..i am very sorry & i will be praying for you to find a match & soon..by the way you are so beautiful!! GOD BLESS you and your family during these difficult times..
Annette Robinson January 05, 2013 at 10:37 PM
Hello I was a dialysis patient for 5 yrs I received a kidney in July 2011, from my daughters pre school teacher. I was at the train station going to see my vascular surgeon and this lady walked up to me and said my name we hugged,I told her I was on dialysis and she offered to give me a kidney. I think about this wonderful angel every day. Your in my prayers, keep your faith you will get a kidney.
Amber Neumann January 30, 2013 at 08:24 PM
Thank you everyone for your kind thoughts. Xoxo

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