My shoes didn’t fit. It was February in Michigan. Six inches of new snow had fallen. And there I was coming through the door to my office wearing a gray coat over a navy blue suit, balanced upon my hiking shoe of choice. The only footwear I had that fit.
The way we find out that chronic kidney disease (CKD) has progressed to the next stage is unique to each of us.
I found out I had kidney disease in high school after going to the doctor for a case of gout. Blood tests soon revealed that my kidneys were damaged to 50 percent loss of function — stage 3 kidney disease.
I graduated along with my high school sweetheart. We went to college.
Life happens despite kidney disease.
A few years later, I had progressed to late stage 3 and my wing tips didn’t fit.
It was time to talk about what to do when my kidneys began to fail. When you reach kidney failure, you have three options: dialysis, kidney transplant, or do nothing.
Andria, my wife, offered to get tested to see if she could donate a kidney to me. If she was a match, it would preempt dialysis.
Stages of CKD
There are 5 stages of CKD. Stage 1 is when there’s slight damage, but normal kidney function remains — stage 5 is when the kidneys stop working. If identified early, disease progression may be prevented or delayed for years.
Unfortunately, many people find out they have CKD at a later stage, when there’s already moderate to severe damage. This provides limited time for planning a life without one’s kidneys.
The test showed she was a match. Our operations were scheduled just a few months away, but I struggled with the idea of Andria making this sacrifice.
I did my research and spoke with the transplant team. I learned that she was a good donor candidate because of her excellent health and that her function would still be in a healthy range.
I would need to take an anti-rejection medication to ensure my body didn’t reject her kidney. The pills would have significant side effects, but our lives could continue close to how they had been. I wouldn’t have to worry about dialysis, and a new ‘normal’ was within reach — or so I thought.
My kidneys failed before the surgeries. A catheter was placed in my chest and I was wheeled into emergency hemodialysis.
I spent 3 1/2 hours each Monday, Wednesday, and Friday hooked to the dialysis machine. As my blood was cleaned, my symptoms improved and I felt better.
I finally received Andria’s kidney but it failed immediately. I spent 4 weeks at the hospital hoping it would begin to work, but it wasn’t meant to be.
Up to this point, there had been no diagnosis for my specific kidney disease. A biopsy of the kidney I had removed revealed focal segmental glomerusclerosis (FSGS). My nephrologist came in and said that it was a horrible disease, and there’s very little known about it.
Dialysis is a gift of life. But it’s hard to appreciate a gift that steals significant time and quality of life.
I was only allowed to drink 32 ounces a day — one Big Gulp. My diet was restricted. Some of my energy returned, but it quickly plateaued.
A nurse brought over a dude who showed me his forearm dialysis fistula. It looked like a pale 5-inch snake pulsing toward his elbow. My vanity said no, but a reminder of the benefits and a resilience I didn’t know I had put reason over fear.
I had the fistula surgery. Deathly afraid of needles, I was soon lathering lidocaine cream on my bicep fistula and wrapping it in plastic, hoping to dull the pain from the poke of the needle. I was a hard stick, often having to be poked a couple of times before success.
I was cold. I watched game shows, then read until I fell asleep. Machine alarms woke me. I headed home where I napped in search of the energy to be a good father. My shoes fit.
But I felt I was a burden. I needed control. My family needed me. I needed me.
I switched to peritoneal dialysis, which required a catheter to be placed in my abdomen. I did it daily, as prescribed, and some of my energy returned.
I started to shop for groceries and cook our meals. We traveled. We adopted our daughter, Antonia. My diet expanded. Although I could now drink more, I still drank an espresso instead of two cups of coffee.
I eventually received another kidney transplant, but this time it came from a deceased donor. After 5 weeks in the hospital, it failed — FSGS struck again. Back to in-center dialysis.
I learned about home hemodialysis with a small, table-sized machine. My nephrologist agreed that I could try this option, and I started training.
Resilience once again stepped to the forefront and I learned to stick myself with the dialysis needles. I felt freedom.
On day 3, my energy returned and I was taking care of myself. I regained lost confidence. I dialyzed 6 days a week for about 2 hours. My libido returned. We traveled more.
In 2008, I began home hemodialysis, which enabled me to get treatment while I slept at night next to Andria, with our kids down the hall. I felt even better. We bought a small travel trailer where I dialyzed as we camped.
Thirteen years later, dialysis feels like a gift of life. Jake is 21 and Antonia is 16 — and I’ve put a ton of mileage on my trusty Teva sandals.
More information on CKD
In the United States, 37 million adults are estimated to have CKD, and approximately 90 percent don’t know they have it. One in three adults in the United States is at risk for kidney disease.
The National Kidney Foundation (NKF) is the largest, most comprehensive and longstanding patient-centric organization dedicated to the awareness, prevention, and treatment of kidney disease in the United States. For more information about NKF, visit www.kidney.org.
Erich Ditschman inspires dialysis patients and others living with chronic illnesses to get outdoors and find ways to enjoy a new normal. He’s a national speaker, published author, advocate, and blogger on his Facebook pages: Paddling on Dialysis for Kidney Health and Black Children White Parents.