What you need to understand about me is that I’ve lived my entire life outside the box. Active, engaged, creative and in control—that’s me.
I was a master builder who worked on centuries-old buildings in and around my hometown of Portland, Oregon. I was the guy people called when a building had a problem no one else could fix. Didn’t matter what it was—concrete, electrical, tile, framing—I could handle it. If there wasn’t a tool to fix the problem, I made the tool. And I did it day in and day out for 40 years.
Four years ago, I ran into a problem I couldn’t fix—at least not right away. I got sick. Specifically, I could no longer lift my arms. So I went to the doctor. I was expecting just about anything but the actual diagnosis—Stage 5 chronic kidney disease (CKD).
The doctor told me I was going to need dialysis.
Now, I’m 65 years old. A couple of decades ago, the word “dialysis” came with very a specific implication—your life was over. I don’t think I have ever been as terrified as I was that day. My whole life—gone in the space of a single conversation.
The doctor told me that I should take some time to grieve the loss of my work and my health.
Making a Stand
So I go home and mourn my life—doctor’s orders. I stayed in my pajamas and did nothing. At the end of that day, I took a hard look in the mirror. I asked myself, “Is this the rest of your life? Come on! It’s got to be better than this!”
The next morning, I claimed a small victory by taking a shower, getting dressed, and having coffee with my wife. Laugh if you want, but that’s where my stand against this disease started,seizing back all the territory CKD claimed for itself, piece by hard-fought piece. Those little victories mean a lot, and they have a cumulative effect.
Clean, dressed and caffeinated, I asked myself what was next. And the obvious answer was to start figuring out what was wrong with me. Because here is the thing about a life-threatening illness: Nobody tells you anything. Sure, I was told I was going on dialysis, but how did that prepare me for the longer, more grueling fight ahead?
The CKD Pipeline
The doctors, nurses and specialists aren’t the problem. It’s the system. It’s broken and everyone—doctors, patients, insurers—has to exist within it.
Most kidney disease patients are entered into a management pipeline with no context beyond the servicing of immediate needs. You have no sense of control. You go into this situation totally blind. You are told that life as you know it is over, and you’re scared and become compliant, no matter how much it eats into your daily life. It’s as if you are asked to swim in the ocean with an anchor tied to your leg and no idea how far off the shore is.
An Unlikely Ally
My path to taking back control of my life wasn’t forged in a high-tech hospital by a medical specialist with years of clinical experience. It certainly wasn’t done within the confines of the CKD management pipeline. It was at the Home Depot.
Shortly after I was diagnosed, I visited the local Home Depot, where I bought many of my supplies and tools, to tell the guys I was quitting. One of the guys I had worked with for decades asked me what was going on. I told him I had health issues and wanted to leave it at that, but he kept pressing me.
So I told him and his eyes lit up. He’s said, “I’m just the guy you want to talk to! I’ve had three transplants and both hemo and peritoneal dialysis. What do you want to know?”
We talked for 90 minutes. I don’t think I asked a single question because he already knew what I was going to ask. He told me about home peritoneal dialysis, which no doctor had told me was even an option. He told me about diet, exercise, work and a million other little things that added up to a plan of action.
Could my doctors have told me this? Sure! But they all share one short-coming: They don’t have a tube sticking out of them. They don’t have a fistula. They can answer questions about kidney function, how dialysis works, the advantages and disadvantages of transplants, but they can’t answer what it’s like to have sex while a tube is sticking out of you. They don’t know, and that’s one of about a thousand questions that I have about living my life with broken kidneys.
Enough Is Enough
We as patients need to stand up and say, “Enough is enough. Somebody needs to fix this.”
And that has been my crusade.
Part of the problem with our CKD management system is that the first thing that goes after your kidney function is your sense of control. Everything is predetermined for you. You go into the system lost and scared, and unless you step back and ask questions, you’ll be pipelined.
The doctors and specialists are focused on your kidneys and keeping you alive. However, that only makes up a small part of the support you’ll need. That’s where patients come into the story.
CKD is a long, grueling journey. It impacts every aspect of your life. Patients need each other to get through it. We share a disease and many of the same contours of life—marriage, a career, kids. There are things I can say to another CKD patient that a medical professional can’t, such as how to live a normal life with this disease. Every doctor has patients, and they need to find ways to talk to each other, as a community.
Second, patients need to be informed. In addition to a community of patients, we need access to structured education in order to make decisions about treatment and management options—whether it’s home dialysis, pre-emptive transplant or palliative care.
CKD management is a problem that requires more than just technology—it needs informed patients who can also serve as advocates for others. The check-a-box management system we have now doesn’t work. There has to be a better way to equip patients like me with the resources necessary to reclaim our lives.