Perceptions

Kidney Failure: A Personal Account

by Isambard Wilkinson

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.

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.”

His subsequent words, ‘dialysis’ and ‘transplant’, filled me with horror. I had misguided visions of sitting out the rest of my life in a darkened room hooked up to a machine which, my having become dependent on it, would kill me if I abandoned it. The prospect of having some unnatural Frankenstein-type operation was equally abhorrent.

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 snipped 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.

In my case, there was a choice between haemodialysis and Continuous Ambulatory Peritoneal Dialysis (CAPD). The CAPD option seemed to me less severe, as it offers independence from hospitals, less fluctuation in energy and no fluid restrictions. A permanent line or catheter is inserted into the peritoneum (a membrane that lines the abdominal cavity), through which dialysis fluid (glucose) is introduced and drained out. Purification of the blood takes place as waste filters through the peritoneum.

While in hospital I was taught the rigorous sterilisation techniques that accompany each exchange. Once, when I was chatting with another dialysis patient, we both mused on how much it was costing to keep us alive. Kidney patients often feel a deep sense of the costs involved. It costs £20,000 a year to keep one person on CAPD and up to £48,000 on haemodialysis. In the long run, transplants are cheaper at £15,000 for a straightforward operation and £3,000 a year on drugs to maintain it. There’s only one way to get over the guilt: chant the L’Oreal mantra: “because I’m worth it”.

In renal units one sees all the disasters; young people who have had all manner of complications from an early age, some swollen, hunched and broken. And yet one also sees people with multiple complications, such as diabetics with amputations and heart or liver problems and most of them are not putting on brave faces, but in fact have a genuine reserve of cheerfulness.

In this place of extremes I found what lay ahead worrying at first, but then, seeing how others managed, I found it easier to understand my own predicament.

By the time I got home, boxes of dialysis bags had already arrived complete with all the attendant paraphernalia of iodine, dressings and sterilising fluid.

It took about five months to get the hang of dialysis. The morning rigmarole of changing the dressing on the catheter exit site, sterilising everything and then doing an exchange makes getting up a long-drawn-out process.

Also, it takes a while to get used to having a pipe dangling out of one’s stomach. Then there are the initial bowel problems and bloating from having two litres of liquid in a place that previously contained nothing. Sometimes dialysis is mildly painful, causing stomach cramps and a referred pain in the shoulder.

It is essential to keep the bowels moving for dialysis to work, but the newly inserted catheter disrupted this and the requisite buckets of laxative caused a month-long cacophony of gurgling and ear-shattering flatulence.

Thus, suffering from what they call in the business “problems of self-image”, I returned with trepidation back into the pool of sexual activity. My first experience, however, gave me a rare insight into middle age: trying to make love with a protruding stomach, shortness of breath and a defective erection. Thankfully things did get better.

About this time, I hit another depression. There were various contributing factors, including two bouts of peritonitis (an infection - due to my sloppiness in sterilising the area where I was doing exchanges - that causes stomach cramps and vomiting) which resulted in a dressing-down from the consultant.

The ups and downs of dialysis were compounded by various realisations sinking home: the peritoneum can usually only be used for CAPD for 10 years; I would be on medication for life. The latter hit me when my consultant, Dr George Mellott, said, “We are going to get to know one another very well over the next 20 years.”

The endless journeys for check-ups and the dietary restrictions are depressing.

Transplants, in many ways, only exchange one set of problems for another: there is the risk of rejecting a grafted kidney; a transplant, if all goes well, usually only lasts 10 years, and then you return to dialysis and you wait for another transplant; the immuno-suppressive pills you take to prevent rejecting the kidney expose you to infections and make you more vulnerable to cancer.

My mind quibbled with these facts of life. But the depression evaporated when I accepted what I had been obstinately refusing to see: that kidney failure is a lifelong problem.

Occasionally I would look up at the bag draining into me and think how strange that dialysis had become so quotidian.

At times there was a feeling of entrapment; for example, waking up at night and feeling perpetually connected to dialysis bags. When I tired of the pep talks I gave myself, or relapsed from focusing on the good things in life, from time to time a wave of sadness seized me. I then realised the effort it takes to keep one’s head above water. The uncertainties seem greater, the slog a little harder.

The best experience for me, psychologically, was when I returned to work for two weeks in London (one of the marvels of the organisation that supplies the dialysis equipment is that, given enough time, it can deliver world-wide) and discovered that I could cope with doing dialysis at work. In theory, people on dialysis can return to work after a week or two. In reality, due to complications and lack of energy, few manage a full-time job

My original abhorrence of kidney transplants was not an ethical standpoint but one that was born out of fear.

But needs must and I resigned myself to waiting for a transplant: the average transplanted kidney survival rate in Ireland, where I live, over the first year, is 93 per cent.

Perhaps surprisingly, it didn’t actually feel as if I was waiting for a transplant at all; one just lives day by day. In Ireland, the average waiting period for a kidney is seven months. In UK, it is nearer two years. It is not so much a waiting list as a pool.

Taking into account how long an individual has waited; the most suitable candidate is selected. Cadaver kidneys (from brain-stem dead victims of strokes or car accidents, for example) make up almost all the donated kidneys in Ireland.

The call for a transplant came at 2.30 a.m. eight months after going on dialysis. I did not really feel in the mood for a major operation and although trying to share the transplant co-ordinator’s sense of joy on the telephone, I was terrified. I left for Dublin within half an hour. On the journey to Beaumont Hospital, fuelled with adrenaline, I vacillated between fear of getting the transplant and fear of not getting the transplant.

I had read that a number of prospective recipients are called for each kidney, and then the most suitable is chosen. Also, I became upset thinking about the donor’s family and how I would be benefiting from their loss.

Now, over a year after the operation, all is going smoothly. With only the pills to take daily and three monthly check-ups in Dublin, life has changed beyond all recognition.

The feeling of well-being, both physical and psychological, is astounding. More energised, healthier, and freed from the shackles of dialysis, I feel human again. A day does not pass without feeling gratitude towards the donor’s family.

I can only hope that it might be of some minor consolation to them that the transplant has given me the opportunity to lead a full and unfettered life once more. A miraculous second chance.

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Page created: 15 August 2001

Last updated: 29 April 2009

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