Meningitis in your words

Jonathan Provis's story

  • Location: England
  • Categories: Meningococcal
  • Age: Adult 25-59
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Amputations
Jonathan Provis

Hi. My name is Jonathan Provis and this is my story

I am 39 years old and I contracted meningococcal septicaemia in May 1994. I was a very fit and active 19 year old working for Royal Mail as a postman. I had played in a big football tournament over the weekend and went to get up for work aching all over. I just thought it was because I had played a lot of football, so I went to work anyway.

Over the day I started to feel worse, but managed to struggle through my first delivery. I went to do my second delivery and felt awful and said to my manager that there was no way I could do it as I was burning up and had no energy and ached all over. So I went home and said to my mum I didn’t feel great and was going to bed, which was very unlike me.

"I was taken to the intensive care ward and my mum and brother were told that I was seriously ill and may not make it through the night"

A few hours later I went to get up to go to the toilet and fell on the floor and started vomiting. My mum heard me and called up the stairs. She noticed that I was covered in a rash and was drifting in and out of consciousness. So she called our emergency GP who came out to look at me and was not sure what it was. He thought I had the flu. He got a second opinion and this doctor called an ambulance straight away as he was not sure what it was either, but my temperature was dangerously high and I was now unconscious.

I was taken to Edgware General Hospital where I was eventually diagnosed with meningococcal septicaemia. I was taken to the intensive care ward and my mum and brother were told that I was seriously ill and may not make it through the night, but, if I did, I would probably lose both my legs and fingers due to septicaemia.

Fortunately I made it through the night but was still very ill and was in a coma and had to have my legs amputated to stop the infection. So I had one below knee and one above knee amputation and three fingers on my right hand. I was in a coma for a few days but gradually got better and was eventually taken off the ventilator and out of intensive care after several weeks and moved to another ward.

I was transferred to Mount Vernon Hospital to have skin grafts on my right leg as the septicaemia had eaten away so much of my skin. This meant around another three months in hospital until the skin grafts healed and I was well enough to be let home. I only needed to come back as an outpatient every week until they completely healed.

Once my skin graft had completely healed I was able to go to Stanmore Orthopaedic Hospital to be fitted with prosthetic legs. I was finally able to walk again after many weeks of intensive physiotherapy every day. I eventually left the hospital walking out of the ward using two sticks, which was something that I never expected to do after contracting this terrible disease. Over time I was able to walk with one stick and finally no sticks at all. I have had much better prosthetic legs over the years which has allowed me to live as normal life as possible doing a full time job and most things an able bodied person can.

"I can only wear prosthetic legs occasionally as my stumps break down regularly due to wear and tear and my low immune system"

But the meningitis did leave me with more underlying conditions than just being an amputee. I have a very weak immune system which left me very susceptible to picking up viruses and makes it hard to fight them. I was also told I would find it very difficult to have children due to being in contact with lots of radiation during my treatment. But I am married with two beautiful children, so they were wrong about that.

But with age things have become more difficult. I can only wear prosthetic legs occasionally as my stumps break down regularly due to wear and tear and my low immune system. So I am using a wheelchair most of the time, but still live a fully active life although sometimes it is a struggle. Unfortunately, due to my increased problems with my legs and immune system, I have recently been in ill health and have retired, but only after I had managed to work for twenty two years.

Hope this story makes you realise how terrible this disease can be.

I was very lucky to live but some people are not so lucky.

Jonathan Provis
November 2014