My love of maps started when, as a young boy, I was given a copy of Philip’s World Atlas for Christmas. I spent weeks poring over maps of countries I’d never heard of and the atlas became a well thumbed boyhood treasure. As I grew up maps and geography, both physical and political, became a passion and I continued to while away many an hour simply following roads or reading about a country’s population and produce. I don’t know whether it was my love of maps or an inate sense of direction that helped me when I became a computer Field Service Engineer covering most of the southern half of England and Wales. As engineers we would often be dispatched to unknown locations and were frequently contractually obliged to get to the customer’s site within 2 hours so getting lost wasn’t an option. Bear in mind this was in the days before mobile phones and satellite navigation systems. I drew a lot of comfort knowing that I could usually find my way from point A to point B with little or no difficulty. When I got married I refined my directional techniques further by relying on my wife’s unerring inaccuracy. When we approached a crossroads in a strange town, if she said go left I turned right. Never failed.
Some of you will already know that when I was diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKD) I simply buried that knowledge at the back of my brain rather than embracing the condition and learning as much as I could so that I’d understand the road ahead. The decision to ignore my condition would undoubtedly top my list of ‘Top Ten Mistakes I’ve Made in Life’. Having realised that I needed to understand my condition, its treatment and prognosis I was surprised to find that there was little detailed information even though some of the symptoms I encountered were common in many CKD patients, for example itching legs, inability to concentrate or irrational thought patterns. All of those are typical symptoms of end stage renal failure but I only found that out when complaining about them to a renal nurse. If they are so common, why wasn’t I made aware of them so that I was prepared?
As I moved on from dialysis through to post-transplant care, that theme of coming across predictable complications was repeated, such as depression, diabetes and removal of my parathyroid glands. Each time I encountered another complication it came as a complete surprise to me to discover that it wasn’t unusual. Preparing a road map for the development of each patient’s Chronic Kidney Disease (CKD) would be impossible but there are quite clearly, to use a roadmap analogy, known staging posts along the way. Some of us may never have to travel through diabetes on our journey; many of us do.
Some patients may prefer not to have a roadmap for CKD. Some medical professionals may prefer not to share the common complications with patients for fear of overwhelming them. I get that. However it would help those patients who, like me, would like to have the knowledge available so that the mountainous ups and downs of living with a chronic disease can be partially mitigated. The advent of the Internet has helped by giving us access to more information but sadly that can be unreliable, out-of-date or simply couched in such impenetrable academic language as to be rendered useless to the average patient. Social media groups such as the Greater Manchester Kidney Information Network help enormously but information I gleaned 10 years ago regarding my time on dialysis may be subjective or inaccurate now.
As I’ve already stated, not every patient will want to know the possible staging posts on their route through CKD but the information should be available in renal units and offered to patients. The patient can then decide whether or not to read it although in my estimation, based on my experience working within a patient to patient support network, many will.
