The full story of Joe’s life as a Bute kidney patient

Haemodialysis patients typically spend four hours a day, three days a week, having their blood cleaned by a dialysis machine.
Haemodialysis patients typically spend four hours a day, three days a week, having their blood cleaned by a dialysis machine.

Bute kidney patient Joe Johnstone says that a community dialysis facility on the island would be hugely beneficial to him and his fellow patients.

Every Monday, Wednesday and Friday, Joe’s alarm goes off at 5am at his home in Rothesay.

Two hours later, he’s on the ferry to the mainland, heading for Inverclyde Royal Hospital in Greenock, where he spends five hours plugged into a dialysis machine, having excess fluid and waste products removed from his blood because his kidneys are unable to do the job themselves.

By the time his treatment is finished and he, and the island’s other dialysis patients, have arrived home, four o’clock has come and gone, and the combination of treatment and travel time leaves them tired, dizzy, sick and able to do very little, if anything, with the little that’s left of the day.

The after-effects can sometimes last until lunchtime the following day - and then it’s time to get ready for the whole gruelling routine all over again the day after that.

That’s the reality of life as a kidney dialysis patient on Bute. And that’s why Joe has lent his full backing to the campaign launched last year by the Bute Kidney Patients Support Group to persuade the NHS that the island should be next on the list for a community dialysis unit in Argyll and Bute.

“I had diabetes for about 12 years,” Joe told The Buteman.

“At the time I didn’t know what was likely to happen, and now I’ve got kidney failure - that means your body starts retaining fluid because your kidneys can’t do it themselves.

“I never really knew anything about dialysis before I was diagnosed with kidney failure about two years ago, and it was a big shock.

“I drove a lorry for years, and my hobby was restoring vintage tractors. I’m still managing to do a wee bit of that, but I’ve had to go on the sick from work, and I’ve been on the sick now for a long time because of the treatment.”

On their three treatment days every week, Joe and the three other Bute residents currently receiving dialysis on the mainland reach the IRH shortly after eight o’clock, and are plugged into their machines more or less straight away.

None spend quite as long receiving their treatment as Joe, who has to spend five hours in dialysis before being disconnected from his machine at around half past one.

“The others are on their machines for four hours rather than five,” Joe continued, “so they’ve got to sit and wait for me.

“Then, when I’m done, we have to wait at the pier until three o’clock for the ferry home.

“Half of their day is wasted waiting, and by the time you get home your day’s gone completely.”

And that describes a day when there are no travel hiccups. On mornings when the Rothesay ferry is disrupted because of bad weather, the Bute patients’ journey to hospital is even more taxing, taking them via the Rhubodach-Colintraive crossing and Western Ferries at Hunter’s Quay, with a much longer road journey to Dunoon in between - and on one occasion last week, when high winds disrupted both the island’s ferry links, the group didn’t arrive home until 8pm.

“We’re all taken at once,” Joe said, “but if the boats are running late, we have to go on late.

“The folk coming from other parts of Inverclyde for dialysis go on the machines at a set time, at one o’clock.

“But if we’re late, sometimes we won’t get our full treatment, which means we won’t get all our fluid removed and our blood won’t be cleaned right, and there’s other problems that can come out of that.”

Then there are occasional days when the whole thing has to be postponed for a day, because of particularly bad weather or, more recently, when Christmas and New Year fall on a treatment day and there aren’t any ferries.

“If we can’t go on a Wednesday, say, we have to go on the Thursday,” Joe continued, “and if we couldn’t get away on the Thursday we’d have to be helicoptered out, because our fluid retention means we’d be hospitalised.

“Helicopter is the only other way they can do it - and what’s that costing?”

In comparison, Joe and the other supporters of the ‘Dialysis Unit for Bute’ campaign reckon that a community unit would be much more cost-effective - and, more importantly, that it would immeasurably improve the quality of life of Bute’s dialysis patients.

The campaign was launched at the beginning of October and, as a letter in last week’s issue from Allan McFarlane, secretary of the Bute Kidney Patients Support Group, explained, it has already raised more than £8,000.

But there’s a long way to go - and a big challenge ahead. A satellite dialysis unit has been operating in Campbeltown since August, saving kidney patients in Kintyre an even longer round trip than that experienced by those on Bute, but the NHS only agreed to go ahead with the scheme after the community raised £300,000 to contribute to the facility’s start-up costs - a figure the Bute campaigners aim to match.

So far, the Campbeltown unit is working well. But the dialysis challenge facing the NHS in Argyll and Bute isn’t going away .

Anything but, in fact. A public meeting in Rothesay in November was told that in addition to the four people from Bute who currently have to travel to Greenock for dialysis, 19 people on the island are at ‘stage four’ of kidney disease - one step away from dialysis.

That public meeting was called in an attempt to address some of the mistaken beliefs about dialysis which apparently exist among people who know little, or nothing, about kidney disease.

One of those misconceptions is that rather than having to travel to the mainland three times a week, patients could have dialysis at home instead. And while that is an option for some - there’s at least one kidney patient on Bute who does just that, in addition to the four who travel - it isn’t suitable for everyone.

“I considered home dialysis at the time I was diagnosed,” Joe said.

“But you need to have someone with you all the time, and I don’t have anyone since Isobel went [Joe’s sister died suddenly on March 14]. And Isobel was frightened of needles anyway.

“The NHS did say they could put a container in my yard so I could dialyse at home, but I’m always feart in case something happens, and it’s the helicopter again.

“At least if something happens in the hospital you’re already in the right place.

“And the staff at the IRH are great. When you’re on the machine, they’re there all the time around you, checking everything.

“They try to make your life as normal as possible. You can read a book, listen to the radio, watch TV or take a laptop with you.

“I’ve no complaints whatsoever about the staff. It’s not their fault if the boats are late and we can’t get our treatment.”

“But having a unit in Rothesay would make a huge difference. It’s the travelling that’s the killer - the last thing you want to do, if you’re already feeling dizzy and sick, is feel even worse by going on a boat.”

A community dialysis facility in Rothesay wouldn’t solve everything for Bute’s dialysis patients. As it is, kidney failure imposes severe limits on things the rest of us don’t think twice about - principally the amount of fluid we take into our bodies.

“A litre of fluids a day is all you’re allowed,” Joe explained, “and near enough everything you eat has a lot of fluid in it.

“And it means all fluids - tea, coffee, milk, juice, fruit, ice cream, even water. And I love a cup of tea

“It can drown your heart and your lungs, and if you can’t get rid of it, it’ll just stay in your body unless you get help.

“I’ve lost about seven stones since I started getting dialysis, and that’s all because of the fluid retention.

“I’m not a big eater, but it was all building up and building up. I don’t drink alcohol, but if I go to a party at night and drink a can of juice, I can get rid of it with water tablets.

“But the next day I can hardly walk. And the water tablets will be stopping shortly, and then I’ll need to stick to the limits.

“And how long will that last? I don’t know.”

The ‘how long’ question is the one every dialysis patient wants to know the answer to. But providing that answer is pretty much impossible.

The NHS Choices website tells patients: “In some cases, kidney failure may be a temporary problem and dialysis can be stopped when your kidneys recover.

“But often, someone with kidney failure will need a kidney transplant. It’s not always possible to carry out a kidney transplant straight away, so dialysis may be needed until a suitable donor kidney becomes available.

“If a kidney transplant isn’t suitable for you, for example because you’re not well enough to have a major operation, dialysis may be needed for the rest of your life.”

Joe is not yet on the waiting list for a transplant. But from what he’s learned in the course of his year-and-a-bit on dialysis, he’s well aware of the danger of pinning all his hopes on a new kidney.

“They’re speaking about getting me on the list,” he said, “but transplants don’t always work.

“I’ve seen people who have had transplants that haven’t even lasted a year, and yet another guy’s had two transplants and got about 20 years out of them.

“If I got one that lasted me, I’d be delighted. But knowing what I know now, I’m not sure if I really want one. If I keep feeling the way I feel, I’d be even happier if there was a dialysis unit in Rothesay.

“I’m in my fifties, but dialysis affects people of all ages. I knew I man in Kilchattan Bay who was 90-something when he was told he’d need it, and he said ‘I’m not doing it’.

“If I found out when I was 80 that I needed dialysis, I just wouldn’t do it. But it’s all right saying that when you’re in your fifties.”

* You can keep in touch with the local campaign by checking out their website - www.butekidney.co.uk - and the ‘Dialysis Unit for Bute Campaign’ page on Facebook.