John McCarthy • Life Stories • LLTGL

John was 23 when his kidneys suddenly failed and he was told he needed a kidney transplant to escape the constraints of dialysis.

My experiences with renal failure, dialysis and transplantation begin in 2004 where I was nestled in the Canadian Rockies. Having taken a two week holiday from work I had joined an international ‘Moose’ tour of the western side of Canada, over the next 9 days I would spend time hiking with 13 other travellers. It was here that I first figured something was wrong, the hiking was painful and I often felt out of breath after a few meters, with extremely tired legs and for some unknown reason I was always among the slowest of the group. I managed to finish my holiday but on returning to the UK decided to see my GP mainly because at this point I was having trouble sleeping as well. A blood test later and I was in the Leeds General Infirmary deciding what dialysis treatment I wanted to start. The resulting tests showed I had inherited Alport’s syndrome from my mum; a genetic condition carried on the X chromosome causing scarring to the kidney during adolescence. It is more profound in males and in almost all case leads to renal failure.

After diagnosis I underwent blood tissue typing tests so I could be placed on the transplant list. This process took about 5 months. I really didn’t take this fact in at first as I was still getting used to dialysis but soon after like so many patients my thoughts inevitably started asking ‘what if’ or ‘how long’ which can be quite distressing and that I found better to put to one side. Three years later and having come to terms with dialysis and rebuilt my life around this, including starting my own business I received ‘the call’ or rather my younger sister did. I was too busy upstairs doing my last dialysis exchange before bed when she came into the room and told me the hospital was on the phone. It may sound strange but even at this moment I didn’t think this was transplant related. To be honest I really should have known better, after all it was 10.30 at night!

I didn’t have a bag packed for this occasion, the idea of that was foreign to me; I had spent 3 years trying to forget about a transplant because in the early days of dialysis it does play on your mind. I used to get annoyed with family and friends that would call the house after 10pm because I thought (or hoped) it was the transplant team. This time however it was and off we went, my parents and I, to Ward 39 of St James’ Hospital Leeds. After arriving and talking with the doctor I had my bloods taken so they could do the last set of matching and then I set about trying to get some rest, it would be about 5-6 hours before the results were back and I would know whether or not I could have the transplant. Thankfully I could and at 7am December 6th 2007 I was prepped and ready to go to theatre.

I don’t really remember much about my recovery straight after the op but I do remember having to have one last dialysis exchange in the night because my potassium level had become too high. Thankfully this was the last dialysis exchange I did and although the kidney didn’t work straight away (it took 3 days to kick in) I was back home after 9 days in time for Christmas. You could say my Christmas came early that year but I would tell you all my Christmas’s came early on my transplant day. The difference this has made to my life is unbelievable. It may sound cliché but I didn’t realise how ill I was until I noticed how better I felt after my transplant.

I will forever be thankful to that individual who decided to donate their organs and also their family. The word courage is often branded around too easily these days but for me any family or individual that is able to look beyond their own life and terrible ordeals and under immense strain and unhappiness decide to donate to someone they have never met or known is truly courageous. As a result of their generosity and gift I am able to look forward to my life again and build it in the way I always wanted.