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IgA nephropathy and renal failure (Isambard)

by Isambard Wilkinson

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Kidney failure, according to the medical literature, is a ‘major life event’. Aged 27 and never having experienced a ‘major life event’ other than being born, when I learnt two years ago that my kidneys had failed, I was not sure to what pitch of melodrama I should sink.

I discovered that I had kidney failure when my eyesight began to fade. I thought that my eyes were infected. I went to the ophthalmology department at the regional hospital. As a matter of course, the doctor took my blood pressure. It was abnormally high. I was wheeled to casualty, where they took blood samples and hooked me up to all sorts of fear-inducing machinery that puffed, beeped and sucked.

A young doctor came and sat down on my bed. “Now. It looks quite serious.” Gulp. “You have high levels of urea and creatinine (the end product of muscle metabolism) in your blood. Your blood pressure is dangerously high. All the indications point to the possibility that you have kidney failure.”

I grudgingly let them keep me in overnight. My blood pressure was brought under control and the intricacies of a renal diet were explained to me. I had never given any special thought to my kidneys. But during my first two-and-a-half week stay in hospital, I soon learnt that they have many more functions than just purifying blood. Kidneys are fist-sized organs situated in the small of the back, level with the bottom rib. They keep blood pressure stable, balance the body-fluid volume and filter waste products. They also produce urine to rid the body of waste substances; and hormones to do such things as manufacture red blood cells, so that oxygen can be transported around the body, and convert vitamin D to strengthen the bones. Far from being almost an evolutionary anachronism, as I had vainly hoped, kidneys are vital organs.

I was sent for a biopsy. A snippet of kidney was taken for analysis. The diagnosis, a few days later, was that I had inflammation of the kidneys. “You are a nephritic nephrotic,” one doctor told me, relishing the terminology. Specifically, the disease that I have is IgA nephropathy (Berger’s). This belongs to the most common group of conditions called glomerulonephritis.

Specialists are not sure exactly what causes IgA Nephropathy, but they cite a variety of potential reasons, which range from genetic predisposition to long term reactions to certain foods.

The verdict was delivered – in the presence of the registrar, my mother and a friend – by the consultant: “The scarring of the kidneys is a lot worse than I thought.”; My heart sank. “There is no treatment that will revive the kidneys – your function is down to 17 per cent and will continue to fall. I estimate your kidneys will hold out for another six months. The end result will be to see if you are fit for a transplant.”

When I was alone that night I shed a few tears. Lying in bed, running through the ramifications of having kidney failure, or at least the little I knew about it at that time, I realised it was going to be all about state of mind.

My case was no different from many other examples of renal failure, in that I had no idea that something was wrong until it had reached a very late stage. Like others, for years I explained away the symptoms as by-products of lifestyle or glitches in an otherwise healthy body.

For a year or two, I had swollen ankles (fluid retention caused by loss of protein.) One girlfriend often remarked on my sallow complexion (anaemia, a by-product of kidney failure) and others just gave me a knowing look first thing in the morning as if to say, “Another hangover?”

Other symptoms I ignored were that I started waking up every night to pee and, to my chagrin, started losing my libido. But the most noticeable symptom that I did not take note of was loss of energy. Life was becoming harder and harder. To get the stamina to work through the day felt as if I were fighting some invisible force. I thought I was getting increasingly careless and lazy. At times I thought I had reached an invisible barrier that would disappear if I kept going.

The months at home, in between the time I was told of my kidney failure and the time I started dialysis, were in some ways the hardest. The drudgery of sinking into brain-dead numbness as my blood became progressively more poisoned left me feeling shattered. It is difficult to quantify lack of energy. My whole body felt swollen and ill. I was surprised at the effort required merely to talk. I felt emotionally dead.

Then there was the finicky new diet. Salt should be avoided, as should potassium and phosphates. Potatoes have to be boiled twice and other vegetables boiled remorselessly. In the early days, there was much blood spilt over cooking. The rules of ‘;renal recipes’ were pinned in charts around the kitchen and the cooking members of the family would argue it out.

At first it was difficult to make the transition from being a fit and healthy person (so I thought) who can come and go at will, to becoming the focus of such oppressive concern at home. It almost drove me insane.

My family – very much involved in keeping me alive – also took time to get the measure of the illness. I met the disease at every turn: in my pills, in my diet, in bodily function, in my family’s attitude, and in my limited ability to socialise. I was hemmed in. Just as initially I resented the idea of being dependent on medication for the rest of my life, so I resented my dependence on people around me for food, shelter and support.

A tremendous amount of support is required for kidney patients, especially through the dialysis and transplant process.

When the call came to go on dialysis last May, I knew that I would be called back to hospital because I was beginning to feel almost dead and thought that the levels of waste in my blood must be at a critical point.

This article by Isambard is an extract from a fuller version he wrote for the Perceptions series on this website. Click here to read it.

To find out more about IgA Nephropathy, click here .

The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.

NKF Controlled Document No. 194: IgA nephropathy and renal failure (Isambard) written: 14/10/2005 last reviewed: 14/12/2015