Kidney Failure: A Personal Account

by Isambard Wilkinson

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.

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 CAPD, click here.

NKF Controlled Document No. 191, Kidney Failure: A Personal Account, written 15 October 2005. Last reviewed 19 October 2009.

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.

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