PKD Connection Blog

Voices of PKD

And how was your day? Part 1

Rob Herman

As many PKD patients know, PKD can often be accompanied by other ailments. Join guest blogger Rob Herman as he shares his and his family’s story about how PKD has impacted their lives:

Though it has yet to be officially determined by experts, I have to wonder if scoliosis – curvature of the spine – might be directly related to PKD. I have PKD, and at age 14, I was diagnosed with a severe, 46 degree curve in my spine. The day after Christmas that year, I had a metal Harrington rod fused to the top and bottom of my spine. My body cast was on for 6 long months! This also was in the middle of my mom’s brain hemorrhage and dad’s cancer recoveries. We never asked, “What else could possibly happen?” We were too afraid of the answer!

Following her recovery, my mom, the miracle “dumb bunny,” passed her driver’s test, but also had to start dialysis. She was constantly weak and sick, and a few years later, just as she turned 50, had a seizure. She died in a hospital from PKD-related complications. I had lost my mom again, but this time, for good.

On the day we buried my mom, my dad’s sister died… from a brain aneurysm. Aunt Helen was an organ donor and selflessly helped over 40 people! Please encourage everyone you meet to be an organ donor.

Rob’s fistula for dialysis

Later in life, I became dependent on a deceased organ donor as I was placed on the UNOS transplant list at age 41. As my body continued to weaken, I blamed myself – not the disease – for not being in better shape. Never Give In! Right? I was a donor, myself, donating blood as often as I could. One time, which turned out to be my last time, the nurse pricked my finger to test my blood and asked me, “Do you know you’re anemic?” I said, “No, does that make you tired?”

About 90 percent of my job at the time required travel around the beautiful Pacific Northwest, which became increasingly exhausting. I also suffered from migraines, so I was often sick on planes, in hotels, and in the car. I would soon have fistula surgery, and discovered that I could feel the blood rushing through my fistula. I freaked out a little, though, the first time I realized I could also hear the blood rushing through my fistula. If you have a fistula, can you hear yours?

I wore a suit for work every day so my arms were covered, but it was fun to freak people out by telling them to touch my arm/fistula. Watching people react was incredibly entertaining!

Rob’s arm showing the effects of infiltration

Then began dialysis, where I was saddened to see the clinic chairs full of our military veteran heroes. My arm infiltrated (bled inside) numerous times. It was incredibly frustrating, and painful. But I never saw another fellow dialysis patient have the bleeding/bruising issues I did.

My kidney transplant came on a beautiful spring Saturday. I was 44, having another dialysis session. My wife, Linda, then told me our doctor called with the great news that the appointment would, Good Lord willing, be my last dialysis treatment ever! I was overwhelmed with all sorts of elated emotions. I then realized my mom never got to experience this glorious feeling of hope and renewal, and I began to cry.

Don’t forget to thank your family, your doctors and nurses, and most importantly, our military veterans, for everything they give us!

And… Never Give In!

Do you have scoliosis, fistula, dialysis, and/or transplant stories? Share them with me in the comments below!

 

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