ABOUT ME

At age 27, I was diagnosed with Polycystic Kidney Disease.  My doctor asked me to come into his office. He told me I had something called PKD.  I asked, "What is PKD?"  He simply stated, "I had multiple cysts on my kidneys and I would have to live with it."  NEVER did he tell me what exactly what "living with it" meant.

I come from a family of 10 children.  4 out of 10 of us were diagnosed with PKD.  My twin sister and I are identical so obviously she had it too.  She like myself, had no clue what journey we were about to embark on and about the future of our family. My sister Barbara was diagnosed with kidney problems years before and I never once heard the term PKD.  I learned much later that my sister Diana had PKD also.  My sister Diana died in 1994 from complications from PKD.  My sister Barbara has been on dialysis since 2000.

It wasn't until I moved to Atlanta, GA in 1995 after a routine doctor's visit that I truly found out what PKD meant.  She had a doctor filling in for her.  After examining me and viewing my chart she asked me, "Do you know what PKD is and how it will affect your future?"  I told her, "No.  I was told it was something I had to live with my entire life."  It was then the hammer came down on me.  She blurted out the whole scenario. She recommended I choose a Nephrologist immediately.  I was in total shock and couldn't get to my car fast enough.  I cried the whole way home.  I simply could not believe my ears.  I called my twin sister the minute I got home to break the news to her.  No one had explained PKD to her either.  I still ask myself to this day, how did we not know for so many years?

Dr. Hill gently guided me through the progression of my disease for 14 years.  As my function diminished and my creatine went up, I would leave her office and crawl into bed and cry.  Then I would get up and continue my day.  Pity party over!

I had decided early on that I would not be a sick person. In my heart I would deal with PKD as a healthy person. I did pretty well until it became apparent in May 2005 that I was coming to end stage renal failure.  I was at 20% function and it was time to go through an evaluation to see if I was a candidate for a transplant and get on the transplant list.

The evaluation was great! I was a perfect candidate and I was on the list.  Knowing the chances of getting a kidney, I began talking to anyone and everyone about needing a kidney. I had leaned early on that you tell everyone your story because miracles do happen.  I never asked anyone for a kidney but I told my story as many times and as often as I could.

One night I was speaking to a colleague I really didn't know that well.  I confided in her (I was not telling my company at that time) that I was getting ready to go on dialysis.  She literally gasped and asked me why.  I told her about PKD (which of course she had not heard of before) and began spewing the statistics of this evil disease.  She asked, "What blood type are you?"  I told her, "I was B+." She said, "So am I.  You know we are only 5% of the population?" I began to explain to her that I was on the list and I hoped to have a kidney in 2-3 years.  Then came the question, "How do I test?" I replied, "You want to do what?" Alexis told me, "She always thought she could do this and God must have been waiting for me." There was a few more words passed through but honestly I couldn't believe my ears.  I told her, "Go home and talk to your husband and family" which she did that week. She called the number and began her journey as a kidney donor.

Alexis told me on my 50th birthday in 2006 that she was a match! However she didn't want anyone to know because she had not gone through the extensive evaluation a donor must go through yet and didn't want to "jinx" it! In October of that year, I had complications with my Peritoneal Dialysis catheter and was hospitalized for a week.  On October 4, 2006, a date I will never forget, Alexis called me in the hospital and sang, (yes sang), "I get to give you a kidney!" I was so sick and the news was so overwhelming I just began to cry and really don't remember when I stopped. My angel was here on earth with me.

On December 15, 2006 Alexis gave me her kidney.  I have an angel hanging in my car with her name on it.  She has become a dear friend and we call each other "kidney sisters." There really will never be a language to express how this changes your life, her life and the hope for other people waiting for a kidney.  I knew though that I wanted to become involved more with the PKD Foundation.  In 2010 I became the Atlanta Chapter Coordinator.  Although I don't always get to spend the time I would like to,  I will never stop fighting for PKD and promoting organ donation.

Once my twin sister came to a low function and was ready for her evaluation.  She began telling my story.  She received a kidney from a nephew-in-law in December 2008.  Both of us are doing fantastic and know we will have challenges one day.  However, we live in the present and treasure each day. We are so grateful and feel so blessed.