EDUCATING AND SUPPORTING BAY AREA KIDNEY PATIENTS

With God’s Help

By Debra Elmore

Throughout my journey with kidney disease, God has blessed me. How can I consider myself blessed, you ask? Easy. The whole time God has put people and events in my life to either help me or allow me to help others. I’m a better person and closer to God because of Chronic Kidney Disease (CKD).

My story starts with my father (but technically with my grandfather and great-grandfather). My dad was diagnosed with CKD when he was 35. They didn’t know what caused it. We knew his father and grandfather died from kidney disease, but since it wasn’t a disease doctors could identify, they said it wasn’t hereditary at that time. In 1980,  my sister and I were tested to see if we could donate a kidney to my dad. They told us that our kidneys “weren’t 100%” so we should keep an eye on them.

After much testing to ensure she was healthy enough to donate, on October 23, 2014, “Harvey” became my new kidney. Again, what a blessing! God not only gave me this wonderful person as a friend for 30+ years but also made it so she could give me a kidney!

I celebrated my five-year kidney-versary this year. I am so grateful to God, Michelle, BAAKP, and all the people I have met (and continue to meet) on this journey. Since my transplant, I continue to be involved with BAAKP and attend support groups because I want to pay forward some of the knowledge, support, and love that I’ve received on my journey.

After my transplant, a genetic test revealed the cause of kidney failure in my family. It’s called Uromodulin Kidney Disease (UKD), and it is rare. Researchers are looking into a promising treatment. I would encourage anyone who has a familial history of kidney disease to ask their doctor for a genetic test.

Note: Debra, as a member of the Board of Directors of BAAKP, functioned for many years as our newsletter editor.  She is now the Executive Director of BAAKP.

During Daddy’s battle (he did hemodialysis, got a deceased donor transplant, rejected after 5 years and went back on dialysis), my family worried and wondered and wished there was a place where we could get answers and meet other people in the same situation. At that time, there was no internet.

Over the years, I continued to get my kidneys tested, and at the appropriate time, my primary doctor referred me to a nephrologist.

Another blessing – my nephrologist, Dr. Carol DiRaimondo of Diablo Nephrology, was very proactive in my care. We watched all my numbers, and she sent me to a nutritionist so I could learn to eat right to best preserve my kidney function.

When my GFR dropped to 20%, she recommended that I immediately get on the waiting list (I chose UCSF) as the wait time at that point was 5-7 years for my blood type. I did as she said and got on the list in February 2007.

Around the same time, I first heard about BAAKP – another blessing. Through BAAKP, I was able to learn so much about kidney disease, dialysis, and transplantation. Most importantly though, I met other kidney patients and their families and learned about their journeys. How I wish BAAKP had been around while my dad was still alive! Knowing what to expect and that you are not alone is so valuable and comforting.

Fast forward to 2013-2014. My GFR was hovering between 15-17%, and I was starting to feel bad. It was time to consider my dialysis options. On a trip to AZ I was talking with my friend Michelle, and she said: “I always told you I would give you a kidney.” I swear I don’t remember her saying that, and if she did I never took her seriously. That night we sat together, and she answered the preliminary screening questions on the UCSF website to be a donor.

Debra and her friend and donor Michelle