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updated: 7/27/2015 1:56 PM

Offer to donate kidney leads to PKD diagnosis

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  • Amy Manelli holds her daughter Quinn while with her mom, Laurie Geiger, at the 2013 Chicago Walk for PKD.

    Amy Manelli holds her daughter Quinn while with her mom, Laurie Geiger, at the 2013 Chicago Walk for PKD.
    Courtesy of Amy Manelli

 

My name is Amy Manelli. I was born and raised in Northbrook and currently live on the North Side of Chicago with my husband and our two daughters, Quinn and Nicole.

I first learned about the PKD Foundation after attending the Chicago Walk for PKD with my family about 10 years ago. At the time, my father was dealing with the full impacts of polycystic kidney disease and I was just beginning to show the early signs.

In his late 20s, my father had been diagnosed with high blood pressure -- a typical first indication of PKD in an otherwise healthy, young individual. After years of declining kidney function, he went on to have complete kidney failure in 1997 at the age of 46.

Shortly after, I was tested to see if I would be a good match to donate a kidney for him and I discovered I had this genetic disease as well. Our family had not talked about the disease and so he had not paid much attention to it in his younger years.

However, after kidney failure and discovering one of his children had the disease, he decided it was time to become educated and find out what he could do to support the effort in finding a cure -- probably not in time for himself but hopefully for me and others.

My father was on dialysis for nine months. He later had two successful kidney transplants, the first in 1998 and the second in 2008. After his second transplant, he was feeling the best he had in many years. He always used to say that he never realized how bad he felt until he felt good again.

In late 2010, he was diagnosed with an aggressive form of cancer. After being on immunosuppressant drugs for 12 years, he passed after a short three-month battle with the disease.

Losing my dad was very difficult for me. At the time, I was also pregnant with my first child. Consequently, my perspective on life changed significantly. I decided to do all I could to support the PKD Foundation in finding a cure for polycystic kidney disease, not only for myself but for my children and for my sister, who had also been diagnosed.

Thankfully, my personal health has remained good. My kidney function has started to slightly decline recently as I move into my mid-thirties, but I still feel well and I am able to live an active lifestyle.

The Chicago Walk for PKD is not only a good opportunity for me to raise funds in support of the PKD Foundation, but it is a great chance to meet other families and friends impacted by this disease. It has been a wonderful experience to be able to share stories and memories.

I am thankful for the generous financial support many family members and friends have given the PKD Foundation in support of me and in the hopes of finding a cure.

For more information about the annual Chicago Walk for PKD or the PKD Foundation, visit http://www.pkdcure.org/connect/chapter-locations/chicago.

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