Initially, you have a very low immune system which is slowly strengthened over the weeks and months that follow so your body does not reject the new kidney.
Everything was fine until three months later when I went home after feeling ill at work.
I have no recollection of my time at home. Apparently, I couldn’t hold down any water (hydration is important with a new kidney). Sue was obviously worried and phoned the renal department who asked her to take me to our nearest hospital. I was kept in overnight on a drip to keep me hydrated.
In the morning, Sue was told to come straight in to hospital. I was apparently a bit confused. In her words, I wasn’t all there. I couldn’t even open a bathroom door! I just ignored the handle and kept pushing the door, trying to get in.
The doctors were not quite sure what the problem was. Before any tests could be performed, I had a seizure which Sue says she still has nightmares about.
I was rushed into intensive care and was in a coma for 10 days. If I hadn’t been in hospital when I had the seizure, no-one believes I would still be here. My consultant who helped to sort out the drugs that would fight the virus but not kill my kidney later said that he couldn’t see how I would survive.
When I awoke, I was told I had fallen ill with meningoencephalitis.
The only movement I could make was to lift my right arm a little. I couldn’t talk. Well, I could but nobody could understand me, so I basically just lay in bed.
I realised that I had to learn how to do everything again.
When I left hospital in a wheelchair some two months later, I couldn’t feed myself and needed help with everything.
But in my own way I was happy; I knew things were getting better every day. In reality, I was very irritating. I was only interested in me, and insisted that the world needed to revolve around me but I didn’t want sympathy.
I learned to walk and do most things for myself again, and eventually the consultant and DVLA agreed I could drive again. This was a major mistake. I wrote my car off in a multi-car accident, in which fortunately no-one was seriously injured. I was told it was due to a total lack of self-awareness.
Over the past three years, I have been getting better. I will never play tennis to the same standard that I did – but at least I am playing. At the end of a busy day, my voice can start to slur or I use the wrong words. And of course my memory isn’t the same.
I am not 100% recovered – and maybe I never will be. But if not, so be it. I will keep fighting no matter what.
Life is good. In a strange way, I am in a better place today. I know what could have been, so every day is a bonus and I am blessed to have a wife who not only gave me a kidney but did so much for me while I was recovering.
Find out more about about amoebic meningoencephalitis here.
