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Kidney diagnosis turns retirement plans upside down

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.