With God’s Help

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.

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.

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.