God Only Knows

…what I’d be without you.

 

I’ve pondered how to begin my first KFWNY blog, and it struck me last night at the Brian Wilson concert at UB. What, you may ask, does UB and the lead singer and musical mastermind behind the Beach Boys have to do with kidney disease? For me, hearing that song at last night’s concert took me back to my teenage years, playing my Beach Boys records all summer long in my garage as we’d jump in and out of the swimming pool. I was young, healthy, relatively care-free, with my whole life ahead of me. After accepting early admission then completing paperwork for one of the most thorough medical exams of my life—up ‘til then—I was off to Penn State. My financial realities obligated me to transfer to UB to finish my undergraduate degree, and I’m proud to be both a Nittany Lion and a Bull.

I didn’t feel right during my last semester at UB and went to the student clinic. One blood test showed that my creatinine was 3.3; 75% of my kidney functioning was gone. They didn’t test for GFRs back in the day. I looked back on my Penn State physical and my creatinine was 1.0 so we know somewhere in my college years my kidneys began to fail. It’s suspected that I have renal failure due to a strep infection that settled in my kidneys. Infection is a not-uncommon way for persons to suffer catastrophic organ failure while the vast majority of renal patients suffer kidney failure due to uncontrolled diabetes &/or hypertension, or a family history of kidney disease.

This blog offers me the opportunity to share my 32 years of end stage renal disease, peritoneal dialysis, the thrill and fear of transplantation, the tremendous up-sides of cutting-edge medical treatments and medications and the somewhat hefty side-effects of long-term immunosuppression. I hope you’ll join me as I recount my kidney journey. I plan to explain and encourage all kidney patients that IT IS DOABLE. Medically, I am an open book and am willing to answer all questions regarding living with end stage renal disease. After more than three decades, I’ve compiled a pretty good list of helpful hints and coping mechanisms to live a great life with chronic illness. I am a glass-is-half-full Pollyanna, and I am realist.

I can’t begin to cover my myriad experiences in my inaugural blog, so I’ll begin with what I believe is the reason I’m still here. I may have been blessed. I may be lucky. I AM compliant. I have the unending love and support of my mom, Diane, and two sisters, MaryEllen and Ann. I have an embarrassment of riches when it comes to family and friends who love me and show deep compassion. They offer help as needed, in immense as well as absolutely perfect small ways.

I have two men in my life that I need to be near. They are the balm on my weary physical and emotional days. They are my absolute joy on the really good days. My husband Jerry and I have been married for 13 years (after having dated 25 years earlier in high school. That’s a story unto itself.) My son, Nicholas, is my heart. He has always been the reason I endure the pain, muddle through the bone-bending weariness, and steel myself for each new medically-necessary onslaught.

God only knows where I’d be without them.

Blog post written by Amy Nash, 2 time Kidney Recipient