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Kidney diagnosis turns retirement plans upside down

28 March 2024

Gary Hughes had spent years working for multi national companies in the Middle East. On their return to the UK, the 59 year old and his wife Judith had planned a gentle move to retirement in Cheshire, supplemented by some consultancy work. But their plans radically changed when Gary ‘crash landed’ onto dialysis.  

husband and wife on a beach with the sunset behind them
Gary and wife Judith

No diagnosis despite symptoms

Gary had had high blood pressure (hypertension) for two years before being diagnosed with Goodpastures disease, an autoimmune disease which damaged his kidneys. His hypertension could have been a symptom of his kidney disease, but doctors didn’t pick this up until things started to go very wrong. 

“In September 2022 I started feeling slightly nauseous and was going off my food a little bit,” Gary recalls. “This carried on, steadily getting a little worse and I could see my blood pressure, which I monitor myself, was getting higher than usual for me.” 

Eventually in November Gary made a doctor’s appointment and saw a physician associate (a healthcare professional trained to support doctors). He was frustrated at being asked to just ‘pick one thing’ to discuss during his appointment when he felt that the full picture of symptoms was important. Tests were eventually ordered but not fast tracked, so it was a week before his blood was taken. At 11.30pm the same evening the 111 doctor called Gary to tell him to go to hospital straight away as the tests had shown there was a serious problem with his kidneys. 

Reluctantly, Gary and Judith made their way to A&E and were there all night. “Early the next morning I saw a doctor,” Gary says. Then things started to become really worrying. “By the afternoon they told me they thought I had an auto immune disease that affected my kidneys. They wanted to move me to the Royal Liverpool Hospital, which has a renal centre. But then they couldn’t move me as my potassium was too high, I was in ICU overnight and they had to put a temporary line in me for emergency dialysis. It was all done in a rush and was a bit of a blur. It was pretty scary, I didn’t really know what was going on.” 

A shock diagnosis

Eventually Gary was moved to the hospital in Liverpool, where, after many tests, he was told he had Goodpastures disease, a rare condition which causes inflammation of the small blood vessels in the kidneys and the lungs. Gary considers himself fortunate that his lungs were ok, but, he says: “Because the Goodpastures wasn’t detected sooner, it had irreparably damaged my kidneys. I was told I would need dialysis long term and I needed to get on the transplant list. I was pretty devastated, it was all a shock to me.”  

Over the next few months a hefty treatment regime followed, involving plasma exchanges (replacing the part of the blood carrying essential platelets and cells around the body), chemotherapy and steroids – all to try to remove the antibodies causing the disease. This was in addition to exhausting dialysis that was essential to keep him alive. 

He first opted for peritoneal dialysis, using a machine to pump fluid in and out of his abdomen overnight to flush out the dangerous toxins. “Within less than a week I realised I couldn’t use the machine, it was just too painful,” Gary explains. “I had to switch to CAPD [continuous ambulatory peritoneal dialysis], flushing four times a day, four changes a day. The first and the last are ok. I find the two in the middle of the day, really intrusive. If I want to do anything like fishing, or playing golf, I’ve really got to plan what I’m doing around it. 

Man sat in hospital chair
Gary in hospital on his birthday

Waiting for a transplant

After a year of this, including a scary bout of peritonitis (a serious infection) whilst on holiday, Gary is really hoping he has some luck on the transplant list soon. “We’ve had a complete change in lifestyle, going from being able to choose what we want to do every day to our lives revolving around dialysis.” 

Gary’s very grateful for the excellent care he received since he was referred to hospital, but still wishes things could have been different. He’d like others to learn from his story – and to persist with their doctor if they feel something isn’t right. 

“Don’t play doctor yourself, go and get checked out,” he says. “Don’t assume what you’ve got is just a benign bug. Once you get in your 50s, if things are going on that you don’t feel are right, definitely get checked out.” 

If you want to find out whether you could be at risk of kidney disease, why not try our free kidney health check: Kidney Health Check | Kidney Research UK

Read more about people living with kidney disease

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