My son, who was four at the time, showed me a box he found in the closet. Inside was a small plastic trophy.  He asked me why we had a trophy, and I told him that we had raised some money for the National Kidney Foundation. He asked, “Were we the Champions?”…

I wrote this five years prior to being medically retired due to Stage 5 chronic kidney disease.  The stage when my kidneys just couldn’t do the work to keep me alive; the stage that left me with three options: death, dialysis, or kidney transplant.  I chose door number three. I couldn’t wait any longer to get back to work, school, being a dad, and loving my wife; it didn’t work out that way. 

I enjoyed my work and how it provided for our family. And when I lost the use of my kidneys, it felt like I had lost my way of life. I was told that, eventually, I would find a new normal, but I desperately wanted my old normal. I was young, angry, and naive.

After five months of emergency hemodialysis with a central venous catheter, my wife, Andria, gave me one of her kidneys. I was looking forward to getting my life back. Unfortunately, the day after the surgery, “Annie,” my new kidney, began to fail. Later my doctor discovered I had focal segmental glomerulosclerosis (FSGS).  

Eight weeks after that, with much trepidation, I was back on the table, counting back from five.  It was time for the surgeon to create a fistula in my upper left arm. This would allow better flow and less chance of infection while I continued with in-center dialysis three times a week. 

A Pivotal Moment

On the morning of September 11, 2001, I awoke early to make the 60-mile commute to my dialysis center. I was hooked to the machine and covered by a blanket when the first plane hit the World Trade Center. The images of carnage flashed across the televisions. There were twelve of them suspended from the ceiling, one in front of each station. The terrible sight was everywhere. The room was silent, save the hum of machinery and beeps of occasional alarms. Surprise, shock, sadness, and anger, I could see that the staff struggled to keep it together. Some patients stayed sleeping. I shared the nurses’ and technicians’ feelings until I, too, nodded off. Dialysis is draining.  

Back home, Andria was riveted to our television, stunned, horrified, and scared.  As the shock changed to fear, her first instinct was to get our son out of daycare. Even though we live in the Midwest, nothing was certain about the number of planes and their targets. Andria would later tell me that she suddenly felt like the world as she knew it might end.

When I walked into our house, Andria met me and, with Jacob in her arms, freed one arm and pulled me close, sobbing. Jacob latched on to me, and the three of us embraced. I was exhausted from my treatment and had to let go and sit down. The images kept repeating on the television, and Andria shared all the emotions she had been feeling. I soon fell asleep on the couch, leaving her alone with Jacob.

In one of the worst moments in our nation’s history that she and I had experienced, I was too wiped out by kidney disease to be there emotionally with my family.

Over the next few years, with Andria’s help, we sought to change my new normal by trying a variety of home dialysis modalities. We found some success, and I got back to my work, for a bit. 

Coming to grips with the reality that I had to live with the help of a machine, I slowly learned there was much more to me than my career. While using peritoneal dialysis, Andria, our four-year-old son, Jacob, and I traveled to Jamaica for a vacation, dialysis machine in tow. I was a den leader for my son’s Cub Scout pack, and I took the machine along when we camped. I felt better, and my attitude changed. Home dialysis gave me strength. I wouldn’t let kidney disease dictate my life; rather I was constantly striving to find my best option to maintain our now somewhat active lifestyle. Unfortunately, due to chronic kidney disease anemia, at 38, I stopped working.  

One good part of my medical retirement is that it allowed me to play a larger role than I would have otherwise had in Jacob’s life and later in our daughter Antonia’s life. Andria had to go back to work as we needed the income. We had both worked before we adopted our son and the plan was for Andria to stay home with him. Kidney disease forced us to improvise. We were learning how to be flexible.

Every morning, no matter how I felt, I reminded myself that this was an extra day to live–to make a difference in my family’s life. That thought was sometimes fleeting. I missed my hectic work-paced life, which often brought me outside to inspect the water resource projects my team designed. I missed the staff, the clients, the travel, and the excitement of getting a new project. I struggled with self-esteem. The disease forced me to be a stay-at-home dad. I regularly questioned whether that was enough.

My work had shaped who I thought I was to my son. Before the loss of my kidneys, Jacob saw me leave in the morning and return in the evening. He knew I had a job. I was proud to show him my office, and he loved to watch the fish swim in “daddy’s fish tank.”  I’d also take him to our project sites. Early on, he and Andria would go with me to some of the conferences where I spoke. We saw horses at Churchill Downs and narwhales and belugas at the Vancouver Aquarium.

I needed to find a way to recapture that spark. I had to have something in my life that took me outside of the illness, something that kept me connected with the network I had created.  Except for the rare occasions when I talked on the phone or saw close friends and family, I felt isolated. I needed hope for my future.  

Andria and I had learned about the National Kidney Foundation of Michigan (NKFM) from a social worker at the University of Michigan Hospital transplant center. We are researchers by heart, and when we are faced with a problem, a large item to buy, and yes, a disease, we hit the internet and research the heck out of it.  We separate fact from fiction with the help of reliable sites, like NFKM and the national NKF.  NKFM provided us with information on transplantation, types of dialysis, and other issues concerning kidney disease, prevention, and research. And that was just the tip of the iceberg of the services and assistance the not-for-profit provides. I had found my outlet. I felt awake.

Walking with Purpose 

The Lansing Kidney Walk is a fundraiser for the organization. Because many of the walkers are on dialysis, it is a relatively short stroll through our local zoo. There are also information- booths from sponsors, as well as food, face-painting, and other festive activities. The event provides an opportunity for many, like me, to get out and celebrate life with others in our situation.

I knew I had to start making a difference in the kidney disease community. Instead of just worrying about my own situation, I wanted to do something to help others.   

So late winter in 2002, I asked my family and friends to join my walk team, which I dubbed, the Riverdudes. I asked each of them to raise $100. I then proceeded to ask just about everyone I knew to donate the same, or what they could, to help fight kidney disease. With the help of mentors early in my career, I learned to ask for what I wanted. If I just asked for a general donation, I was pretty sure my average donation would be about $20. By asking for $100, I felt I was sharing a sense of urgency and seriousness, and I was sure my average would jump to $50.  

Facebook’s donation service hadn’t been developed, which allows users to ask all their friends to support their own worthy causes. I started by writing a short request that included a brief story of our situation with a picture. Sometimes we shared a goofy picture, like the time that Nia and I wore frog costumes, and Jacob was dressed in my fishing vest and hat while holding a net. We posed in front of a big painting we made of wetland plants. At other times we might use a photo of the kids in my lap while dialyzing at home. I photocopied this and then wrote a personal note on each one. I sent it along with a stamped return envelope.  Later, when it was available, I added a weblink. I was excited when the mail came. Often an encouraging note was attached with each check that I received. Knowing that I wasn’t forgotten and that my friends and co-workers were supporting me helped me to not feel so alone. Outside the walls of my house, I still mattered. I sent thank-you notes.  

To those from whom I hadn’t heard, I blasted out email reminders along with an update on our progress. The Riverdudes really came through, and our team had the most donations. They even gave us a small trophy. Jacob’s face was beaming with pride, as was mine. For the next several years, I’d pull the team together to join the walk. Each year the members varied.  

Five years after our first walk, a second transplant failed from FSGS, and a close friend from middle school joined our team to give me a hand. I had spent over a month in early spring at the University of Wisconsin Hospital working to keep the newly transplanted kidney working.  When I came home, it turned out that the kidney was infected and causing havoc to my body.  We turned around and headed back west so they could remove it. During this time, I had been emailing the Riverdudes and past donors about my journey. When we returned, it was time for the walk. I didn’t want to miss it, but I didn’t have the strength to walk. We borrowed a wheelchair from my dialysis center, and my friend David pushed me around the zoo. Once again, we were the team with the highest amount raised. While it is fun to be the top team and extremely helpful to the charity, it isn’t just that; reconnecting with my friends, past co-workers, and family is also important.  

Boiled down like this, it sounds easy, but each step takes energy.  Dealing with dialysis and anemia means that there are days and sometimes weeks where nothing gets done. It was a commitment each year, which was good for me, but often daunting.

Whenever I feel that I just can’t do it, I remember my answer to Jacob’s question that he asked years ago: 

…I wasn’t amounting to much of a role model. To my son, that tiny trophy signified that we were winners. Being a winner in my son’s eyes is very important to me. I finally responded to him: “Yes, Jacob, we were the champions.” After that, I found the energy to field our team.

About the author:

Erich Ditschman is a national speaker, author, advocate, and blogger. His topics include kidney disease, dialysis, kidney transplant, intimacy with dialysis, coming to terms with chronic illness, getting outside, and discovering one’s best life in the face of adversity.