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16th December 2014

Living with dialysis, then and now

The thought of an artificial organ that’s keeping you alive from outside your body – literally carrying the blood through tubes from your body into a machine sitting next to you, which cleans it and then pumps it back into your veins – sounds like something out of a science fiction film.

Yet for people with kidney failure like 25-year-old Neil Robinson, not only is it very much a reality, it’s a way of life. Having been the UK’s longest-waiting transplant patient until very recently, Neil can tell you pretty much everything there is to know about being on kidney dialysis. After all, he was hooked up to this life-saving technology three times a week for over 22 years before having a transplant in January 2014.

Although many people develop kidney problems later in life as a result of other health problems like high blood pressure or diabetes, Neil was born with a condition called kidney reflux, which is a blockage of the kidneys. These organs play a critical role in eliminating toxins from your blood by acting as filters that remove unwanted water and waste, which are ultimately flushed out of your body when you urinate. When the kidneys don’t work properly as in Neil’s case, the build-up of toxins in the blood is life-threatening.

“You’re always grateful for something that keeps you alive.”

Dialysis does the job that the kidneys cannot do. Various versions have been around for decades but today there are two main types: haemodialysis and peritoneal dialysis. Haemodialysis removes waste and water by circulating the person’s blood outside his/her body through an external filter called a dialyser, which is attached to needle(s) inserted into an access point inside the person’s arm (the fistula). Tubes lead from the needles to the dialyser. The fistula is surgically created by joining an artery and a vein to increase blood flow, allowing easier access to the blood for dialysis.

“It makes a buzzing sensation in your arm when it’s touched but you don’t really feel it when you’re walking about. I’ve had two: I got the first one in my left arm when I was 14, but unfortunately it only lasted about a year. I got another one in my right arm when I was 18,” says Neil. “The fistula looks like a lump. The more it gets needled, the more it grows, and the bump never goes down,” he adds matter-of-factly.

“The very first machine I had was terrible. It was very temperamental, and any movement you made caused it to beep.”

With peritoneal dialysis, the blood is cleaned inside an area of the abdomen called the peritoneal cavity. It involves the permanent insertion of a tube (catheter) leading into the abdomen which filters waste from the blood by flushing a special dialysis fluid into and back out of the peritoneal cavity. From the age of two to four, Neil was having 12- to 16-hour peritoneal dialysis sessions every other day in hospital, where he was attached to a machine used to control the drainage of the fluid.

“The very first machine I had was terrible. It was very temperamental, and any movement you made caused it to beep. Being on that for two years got pretty annoying – obviously not for me because I was only a child, but for my mum. It was hard to get any sleep with that thing beeping all night.”

As Neil grew, his dialysis needs changed and he was put onto a different machine at age four, for two and a half hours, three times a week. Although he received a kidney transplant when he was seven, it failed after less than a week and he was soon back on dialysis and back on the transplant waiting list. By the time he was around 10 years old, Neil was having four-hour dialysis sessions three times a week. “I got educated two days a week, but some mornings after dialysis, I was still too mentally and physically drained to go to school. No matter how you try to lift yourself up, the tiredness just overcomes you.”

Being tired is just the tip of the iceberg when it comes to the effects of dialysis on patients, but as Neil puts it: “You’re always grateful for something that keeps you alive.” At the same time, however, he says: “Your body can only take so much.”

As the dialysis cannot regulate calcium levels like properly functioning kidneys do, patients can also experience bone pain. This is one of the reasons why they have to be on a special “renal diet”. Chocolate and crisps are among the foods we take for granted, but they are strictly off limits for dialysis patients, says Neil. Indeed, as a teenager he commented that one of the hardest things “was watching other kids eating lots of food that I’m not allowed”.1 Neil says that being on dialysis has also restricted him in terms of going on holidays and working2. However, he’s found great comfort in music and plays several instruments including the piano, the accordion and the flute.

It’s no wonder Neil feels worn out. A snapshot of his life reads like a page from the Guinness Book of World Records: about 3,400 dialysis sessions3, 75 surgeries, 14 catheters, 8 unsuccessful calls for a kidney, 3 kidneys in his body, 2 fistulae, 1 failed kidney transplant… as well as winner of various awards including the National Kidney Research Fund’s Young Hero Award and the British Kidney Patient Association’s Children of Courage Award.

“You’re not restricted to trying to not move. Especially with a catheter, you have two arms free, so you can work on a laptop or whatever.”

Neil says he’s definitely seen some positive technological advances in dialysis over the years. For example, gone are the days of the constantly beeping machines. “Now they come with a blood pressure monitor built in, and the machine usually only beeps when it’s taking your blood pressure… unless there’s an issue with the needle or something.” He’s also noticed that there’s more freedom on dialysis in terms of the movement. “You’re not restricted to trying to not move. Especially with a catheter, you have two arms free, so you can work on a laptop or whatever. With a fistula you only have one arm to work with, so it’s more limiting. I mostly watched DVDs or talked to the nurses.” Neil nonetheless feels that the fistula is the best access for dialysis because there’s no external hole. “You can go swimming the next day,” he points out.

Sandip Mitra, Consultant Nephrologist and Senior Lecturer at the Manchester Royal Infirmary and University of Manchester in the UK, is keenly aware of both the successes and the limitations of dialysis. There’s no doubt that the technology has come a long way since Dutch doctor Willem Kolff created the first “drum dialyser” in 1943 as an experiment to help save injured soldiers during World War II, and since American doctor Belding Scribner made long-term dialysis possible nearly two decades later with the invention of the Teflon shunt (a tube that didn’t damage the arteries and veins so they could be accessed repeatedly).

“The technology has improved in that it gives people more freedom than ever before, but it is not quite there yet to give them true freedom,” says Mr Mitra, who is an expert advisor to Kidney Research UK and is a firm supporter of getting patients to set up home dialysis whenever possible.

Noting that the “technology and the human factor are very closely intertwined”– and that not everybody can have a transplant – he says the goal is to make dialysis like a kidney transplant, but without having it in your body. “It’s not about the length of life; it’s about the quality of it,” he adds.

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