My shoes didn’t fit. It was February in Michigan. Five inches of new snow had fallen. And there I was walking through my office door wearing a gray coat over a navy blue suit balanced over my favorite hiking shoes. The only shoes I had that fit.
The way we find 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 because of a case of gout. Blood tests soon revealed that my kidneys were damaged with a 50% loss of function – stage 3 kidney disease.
I graduated with my high school boyfriend. We went to college.
Life happens despite kidney disease.
A few years later, I had progressed to final stage 3 and my wingtips did not fit.
It was time to talk about what to do when my kidneys started to fail. When you reach kidney failure, you have three options: dialysis, kidney transplantation or doing nothing.
Andria, my wife, offered to take the test to see if she could donate a kidney to me. If it were compatible, it would be the prevention of dialysis.
CKD Stages
There are 5 stages of CKD. Stage 1 is when there is mild damage, but normal kidney function remains – stage 5 is when the kidneys stop functioning. If identified early, the progression of the disease can be prevented or delayed for years.
Unfortunately, many people find that they have CKD at a later stage, when there is already moderate to severe damage. This provides limited time to plan a life without the kidneys.
The test showed that it was compatible. Our operations were scheduled for a few months later, but I struggled with the idea of Andria making that sacrifice.
I did my research and talked to the transplant team. I learned that she was a good candidate for donor because of her excellent health and that her role would still be healthy.
I would need to take an anti-rejection medication to make sure my body doesn’t reject your kidney. The pills would have significant side effects, but our lives could continue as close as before. I wouldn’t have to worry about dialysis, and a new ‘normal’ was within reach – or so I thought.
My kidneys failed before surgery. A catheter was placed on my chest and I was taken for emergency hemodialysis.
I spent three and a half hours every Monday, Wednesday and Friday connected to the dialysis machine. As my blood was cleaned, my symptoms improved and I felt better.
I finally got Andria’s kidney, but it failed immediately. I spent 4 weeks in the hospital waiting for it to start working, but it was not meant to be.
Up to this point, there was no diagnosis for my specific kidney disease. A kidney biopsy that I removed revealed focal segmental glomerusclerosis (FSGS). My nephrologist came and said it was a horrible disease and very little is known about it.
Dialysis is a gift of life. But it is difficult to appreciate a gift that steals a lot of time and quality of life.
I could only drink 32 ounces a day – a Big Gulp. My diet was restricted. Some of my energy came back, but it quickly stabilized.
A nurse brought in a guy who showed me his dialysis fistula on his forearm. It looked like a pale 5-inch snake pulsing toward its elbow. My vanity said no, but a reminder of the benefits and a resilience that I didn’t know I had put the reason for in fear.
I did the fistula surgery. With a deadly fear of needles, he was soon putting lidocaine cream on the biceps fistula and wrapping it in plastic, hoping to relieve the pain of the needle stick. I was a hard-on, often having to be poked a few times before success.
I was cold. I watched game shows and read until I fell asleep. Machine alarms woke me up. I went home, where I took a nap in search of energy to be a good father. My shoes will do.
But I felt like a burden. I needed control. My family needed me. I needed me.
I switched to peritoneal dialysis, which required the placement of a catheter in the abdomen. I did this daily, as prescribed, and some of my energy came back.
I started buying groceries and cooking our meals. We travel. We adopted our daughter Antonia. My diet has increased. Although I could drink more now, I still drank an espresso instead of two cups of coffee.
I ended up receiving another kidney transplant, but this time from a deceased donor. After 5 weeks in the hospital, it failed – GESF attacked again. Return to dialysis at the center.
I learned about hemodialysis at home with a small machine the size of a table. My nephrologist agreed that I could try this option and I started training.
Resilience once again passed and I learned to use dialysis needles. I felt freedom.
On day 3, my energy returned and I was taking care of myself. I regained my lost confidence. I was on dialysis 6 days a week for about 2 hours. My libido came back. We travel more.
In 2008, I started home hemodialysis, which allowed me to undergo treatment while sleeping at night next to Andria, with our children in the corridor. I felt even better. We bought a small travel trailer, where I did dialysis while we were camping.
Thirteen years later, dialysis looks like a gift from life. Jake is 21 and Antonia is 16 – and I spent a lot of time on my dependable Teva sandals.
More information about CKD
In the United States, it is estimated that 37 million adults have CKD and approximately 90% are unaware that they do. 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 oldest patient-centered 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 leave the house and find ways to enjoy a new normal. He is a national speaker, published author, advocate and blogger on his Facebook pages: Paddling on Dilysis for Kidney Health and Black Children White Parents.