Meningitis in your words

Danny M's story

  • Location: UK
  • Categories: Meningococcal
  • Relationship: Self
  • Outcome: Recovery with after effects
A few days after I was born, all those years ago, my mum noticed I was sleeping a lot and being sick. Generally worried as first time parents, they took me into hospital and were told that I had meningitis. I was immediately transferred to Great Ormond Street Hospital where they were treating me. Ultimately, I had to go into surgery, during which I died 8 times and had a shunt fitted to drain off any fluid that builds up on the brain. I was such the celebrity that I even had an article written about me in a national newspaper.

This has all left me with a few health issues to deal with and over the years I have had various operations but everything changed in 2021.

In August 2021, I had a fall in which I hit the back of my head. From there, my wife noticed that I seemed to change. I became lethargic and irritable and she noticed a real change in my personality. This all built up until Christmas 2021, when I fell asleep at the dinner table and did not eat a lot of the delicious Christmas dinner that was before me.

After that, my wife was convinced that something was wrong and took me to the hospital, where I was admitted onto a ward for some observation.  Everything was fine – the doctors didn’t really know what to do with me, to be fair, as I was walking around and talking to everyone and eating. 

The decision was made for them, however, after being in hospital for six days as I collapsed while on the ward and could not be resuscitated. After being blue-lit in an ambulance up to St George’s Hospital, I was taken straight into surgery, where it was found that my shunt had moved and was blocked. A new, parallel shunt was placed but due to other complications I spent nine and a half weeks in hospital.

I spent a total of six months away from work because of this and went back in full time in July 2022. 

Again, after a while, my wife noticed a few subtle changes to my behaviour. I was lethargic and was randomly being sick. We spoke to my GP who told us to go to the local hospital, where a CT scan did not give them any cause for concern. My wife, however, was still very concerned and so e-mailed my consultant who had carried out the surgery last January. He took steps to view the CT scan that had been done and called me that afternoon. 

Despite it being 4 days before Christmas, he told me that I needed to go straight into hospital as the shunt was actually blocked again. Up to St George’s Hospital we went and I was back in theatre that night for a shunt revision. This time, however, I was in and out of hospital within 48 hours – such a different experience and I was able to be back home with my family to enjoy Christmas.

I have been told that this can happen again but there is just no way of knowing. It just goes to show that a disease I had 46 years ago can still impact upon my life even now. If there is anything I have taken away from this, it is to appreciate everything and live your life to the full – and to listen to your wife when she says that something isn’t right as if she hadn’t acted on both occasions who knows whether I would be here to write this tale.

After coming out of hospital after my first revision, I decided that I wanted to do something to try and help raise awareness of meningitis and to offer support and a safe space for people to ask questions or seek advice or just to talk about what they have experienced. I have set up a Facebook group called Meningitis Matters and would welcome anybody who wants to join, to get more information or share their story so that others know that they are not alone. 

It really does feel like a lonely place at times, having to constantly deal with something that first reared its head almost half a century ago, but the important thing to remember is that you are NOT alone, people do care and people can help – you just have to let them know.

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