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Mike’s Story

Fifteen years ago my little sister Julie telephoned to tell me not to worry but that she had developed some exotic form of renal failure (IgA nephropathy). Knowing what this meant I immediately asked if she wanted one of my kidneys. We both laughed (I thought it was a good, albeit very dark humoured joke), but after a brief pause, she replied, very seriously ‘yes’. I don’t remember how we ended the call but I knew that was the beginning of our year-long journey, which would inevitably bring us even closer together.

Red carpet treatment

The brilliant, under-rated, under-staffed, under-funded and under threat NHS became our home. Not just for the few days pre and post op but for the twelve months leading up to the big day. I think Julie had the harder time, as if the endless prodding and poking, needles and syringes wasn’t bad enough, she was having to be hooked up to a dialysis machine at home for eight hours every night. I meanwhile was treated like a king – if my appointment was at 10am I was seen at 10am, no matter which of the four hospitals I happened to be at.

For almost a year we went through every conceivable test; monthly sometimes fortnightly bloods, MRI and CT scans, as well as regular fitness tests (mental, emotional and physical). They checked for undiagnosed diseases, hepatitis, aids, cancers and many more. For me the kidney function test at Barts was the worst. No food the day before then a radioactive dye injection into the bloodstream for breakfast, followed by hourly blood tests and scans for the rest of the day to gauge how both kidneys were coping. I remember feeling pretty sick for days afterwards, but thankfully the results came back showing both kidneys were working equally well and the left one had my sister’s name on it.

Weighing up the odds

My nurse at the Royal London did an outstanding job of coordinating this gruelling testing regime. He was always there when I needed someone to talk to and could be relied upon to advise which one of the four hospitals I was due at next. His role was to keep me informed and to provide guidance and reassurance as well as perform blood tests. But he also had to ensure I fully understood the risks, to both of us. He would say we might be a perfect match in terms of DNA, blood and tissue type but the kidney may still be rejected after the transplant. I was marginally concerned when he would talk about statistics – apparently there was a 1 in 3,000 chance we wouldn’t even wake up from the anaesthetic. I’d be thinking about those odds as he’d continue, trying to reassure me by telling me that there had been no fatalities for decades, to which my irrational brain would conclude that they were well overdue.

But all worries were easily pushed aside whenever we were being tested together. We would keep each other’s spirits high and always had a good laugh with the nurses, usually at my expense – I almost fainted following a particular heavy bout of blood tests at New Cross. But seeing my sister was the tonic to allay all concerns. Her bravery was infectious and it was this more than anything else that meant I was in the QE kidney ward in Birmingham, saying farewell for possibly the last time as I was wheeled past her bed on my way down to the operating theatre for my laparoscopic nephrectomy.

Transplant success

Two hours later I awoke in the recovery room and slowly became aware of what had just happened. My elation and joy manifested in a few choice expletives. The anaesthetist had heard much worse, thankfully. She gave me some more epidural and told me to wave to my sister as she was being wheeled through to the operating theatre for the second part of the transplant. I remember waving but not actually seeing her. She later told me she’d never seen me look so bad.

My fondest memory of that day was when I called the folks later that evening to let them know we were ok. I passed the phone to my brave little sister and heard her say the words ‘Dad, it hurts…But it’s worked.’”

Fourteen years on, brother and sister are both fine, but never take their health for granted. Julie’s IgA has come out of remission a few times, and treated with very high dose steroid each time.

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