Why I Became My Own Dialysis expert

I feel like I became my own expert out of need rather than choice. I was born with a spinal disorder that means I have been disabled my whole life. That also means that I have been hospitalized from a very young age. Once when I was 10, I was in the hospital for an entire summer and when I came out, I had lost my ability to walk unaided. I have known for decades that the one kidney I was born with would probably not last as long as the rest of my body and I would need dialysis at some point. This never kept me from living my life to its fullest. I moved from Europe to North America as a young man and lived there for more than a decade. But, I also knew I would have to return to Denmark to get the best treatment for my kidney disease when I got that far, which means I never settled.

I came back almost 10 years before I needed dialysis. I would see a nephrologist between every 1 and 3 months, but didn’t think much about it. It was just another visit to an expert, and I was used to such. At some point I found that my ability to read scientific articles became more difficult. I asked my nephrologist about it and he said it was probably age related. At the time I was in my early 40s, I was a psychologist with a keen interest in cognitive science as well as health science. So, I didn’t believe him.

This was what set me on a quest to find out more about my kidney disease. I simply didn’t trust what he had told me. I knew doctors weren’t all-knowing oracles and obviously this guy had never been asked about the relationship between kidney disease and cognitive issues. I soon found out that only a small fraction of doctors and nurses in the world had published about it either. So, I set off to read virtually everything that was written about it at the time.

Parallel to this discovery, I knew that I wanted to do home dialysis once I needed dialysis. A transplant was not an option for me for various reasons. And there was no way in hell I was going to spend 3 days a week in some clinic surrounded by healthcare professionals. I think they do a marvelous job and have a number of friends who are doctors, nurses, and occupational therapists. But, I knew I would not fit well into such a setting day in and day out. So, when the threat of dialysis was imminent, I started looking into the home treatment options. And to my great dismay, I found out it was not that common.

I was surprised when I read an article noting that 90% of doctors and nurses would choose a home option, while less than 10% of patients received that type of treatment. It became clearer to me when I attended the so-called ‘Kidneys School’ at my local hospital and learned that I already knew everything they told us for 2 full days. All the things I felt like I needed to know were never addressed, even when I asked about them. In other words, I was way ahead of most others—yet still felt like I knew nothing!

What I learned from this is that the vast majority of people with kidney disease don’t know enough to make an educated choice about the rest of their lives because they have far too few facts in place. I think this is because clinic staff are not educators. They may know a whole lot about kidney disease but they don’t have the ability to transfer that knowledge to patients so we can make an informed choice about our treatment options. This is not necessarily their fault. What they learn in med school or nursing school is not educating patients.

One could say that what they learn is quite the opposite. Most hospitals and clinics work like an old-fashioned Victorian household—with the all-knowing Father Doctor at the top making the rules, Mother Nurse enforcing them, and a number of servants quietly making sure things run neat and tidy. Patients are akin to the children having no voice and expected to follow orders from the adults to the letter. And when the children don’t behave and do what Father Doctor or Mother nurse says, they are deemed non-compliant, which is just a fancy word for “bad behavior.”

This sort of hierarchy runs counter to everything we know about modern ways of teaching adults. “Shut up and do as I say or…” only instills fear. And sadly, that is what happens when we are deemed non-compliant. This realization made me want to learn as much as I could about different aspects of kidney disease.

As a psychologist, I knew that chronic illness had three ways of affecting a person and that doctors were only interested in one of them. In health psychology and anthropology, we talk about disease impacting people socially, psychologically, and physically. Yet, only the physical aspects are interesting to doctors. For most of them, healthcare is all about numbers, statistics, and outcomes. And, the latter is all about how often do we end up in hospitals and how soon we are going to die. Of course, there are thousands of other outcomes they could look at—but few of them are ever researched.

Good nurses may look at the social and psychological aspects of how disease affects the patient. But they are part of a system run by doctors, so those parts may be overlooked because they are busy looking at the same numbers, so they can tell whether a patient is compliant or not. More often than not. they are not taught how to help patients who are struggling with things socially and psychologically.

So, I became an expert in how to deal with kidney disease on all levels of my life. First, I did it out of my own curiosity and—ultimately—my survival. Only later did I realize I had to share my knowledge with others. I couldn’t keep all I had learned to myself. That would feel like a terrible waste. So, I started teaching not just fellow patients but also doctors, nurses and our relatives who often are just as terrified to see their loved ones affected by kidney disease. One could say, kidney disease was my fate, and it also became a sort of job to share my knowledge, so that’s what I do now.