Perceptions

The Importance of Being Patient

by Sarah Turnbull (pre-dialysis patient)

In October of 2004, after an 18 month period of chronic, recurring bladder infections during which my GP found both blood and protein in my urine and revealed that my cholesterol and blood pressure were ‘slightly raised’, I decided that the antibiotics I was being prescribed were obviously not the answer. When I asked my GP if the symptoms could be related to my diabetes (which I have now had for just over 18 years), this was dismissed as ‘unlikely’. It occurred to me, however, that perhaps these seemingly unconnected symptoms were pointing to a more serious underlying problem. I could sense that something wasn’t right. With this in mind, I began to search the internet with absolute determination to try and uncover the real cause of my ailments.

It took as little as 3 or 4 hours for me to conclude, with complete horror, that there was more than a slim possibility that I was suffering from the early stages of CKD. Four days later, with my mother as support, I sobbed as I told the GP of my discovery.

As a result of this self-diagnosis, in November 2004, I was referred to the renal department of the Freeman Hospital in Newcastle as an outpatient. It was here that I met my current consultant, Dr. John Tapson, for the first time and was given the news that it was more than likely I was suffering from early stage kidney disease, brought on by my diabetes. And so, following several blood tests and a kidney biopsy, Dr. Tapson’s suspicions were confirmed and Diabetic Kidney Disease (DKD) became part of my life.

With hindsight, it took over a year for me to realise the reality of the condition. What it might mean for my future and the impact it would have on my plans for a family, my career and my relationships. It’s amazing what the subconscious can hide away from your everyday thoughts as a way of protecting you. I eventually made the decision that I was ready to find out more and it was then that I found and read the story of Deborah Duval on the NKF website. When I finished reading it, I cried unreservedly for 2 hours. Over the next few weeks, I gave her story to my consultant, my psychologist, my family and friends and my partner at the time. It explained what I could not - my fears and emotions as a young, ambitious and until now, fit and healthy woman. As a patient, it has been the most valuable piece of writing I have come across.

I understand now the difficulty that consultants face in choosing the ‘right time’ to reveal all aspects of renal failure – diet, dialysis, transplant, immunosuppressant drugs. There is so much to take in and I am still learning. Dialysis could be years away but when I get to end stage renal failure, I want to understand what is happening to me and how I got there. I want to know that I’ve been involved in making decisions about my treatment. The prospect of dialysing is one that terrifies me, even just choosing the method of dialysis. Understanding it gives me a sense of control, it’s integral to my sense of well-being. I will never control DKD completely but I’m determined that it won’t defeat me. I take my medication, I see a clinical psychologist to help me prepare, I question as many people along the way as I can and sometimes, I take a break and let it sink in again. I never rush myself.

Fortunately for me, I have a wonderful consultant who recognises that I have the right to know as much or as little as I feel comfortable with. That I am entitled to make decisions about my treatment and who supports me by helping me to understand my options in as much detail as I want. At the moment, my kidney function is still considered normal and has ‘absolute stability’. Dr. Tapson tells me this is not uncommon. Most of the time I get on with life in the same way I always have and, when I need to, I ask questions and find out more. The importance of being able to read about or hear from others in the same position cannot be overestimated. Nor can the ability of my consultant in making the complexities of DKD understandable and allowing me to go at my own pace, even if at times, that requires a great deal of patience.

Click on the following links to learn more about Chronic Kidney Disease (CKD) and Diabetic Kidney Disease (DKD).

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