Mat Johnstone

Whilst I was in the hospital, my parents used the Meningitis Now helpline

Mat J

Young Ambassador

Hi, I'm Mat. On Saturday 23 October I celebrated my 17th birthday by having friends round to my house. On Monday I had my first driving lesson and on the Monday evening I played tennis at my club.

The following day everything was normal until I went to bed and started to shiver uncontrollably. I started putting on layers of clothes but was still shivering. I had an uncomfortable night and in the early hours of the morning I vomited several times. I started hallucinating and feeling very strange. 

My breathing became shallow and my dad called the ambulance, believing that I was having an asthma attack. The ambulance arrived and the paramedics came into my room and took my temperature, which was about 39 degrees. They opened the windows and after an hour, my temperature started to fall – they said I most likely had a virus and should see my GP in the morning.

I carried on being sick and having diarrhoea and went to my GP first thing in the morning. She examined me and said that most likely I had a virus and to go home and rest. I did this, but felt very weak and still had diarrhoea. I started to have pains in my muscles and found walking difficult. I had some sleep that night, but kept needing the toilet and found it hard to get to the toilet as I was aching.

On Thursday morning I still felt very unwell and this continued through Friday. On Saturday morning my mum noticed that I had some lumps on my forehead and arms and at that stage rang NHS Direct. They recommended it was best to check out with a GP and on Sunday I attended the GP walk in centre after lunch. The GP examined me and said I had a throat infection and prescribed some antibiotics, which my mum went to collect.

I returned home with my dad and started to feel very ill. I became very thirsty. I sat on the settee in my living room and when my dad came back with a glass of water I started having a seizure. My mum came home at that time and immediately called an ambulance.

Within about seven minutes the ambulance arrived – by then my seizure had stopped – I don't remember anything from this moment onwards. The ambulance took me to Queen Alexandra Hospital in Portsmouth and I was taken into resuscitation in A&E. Within a few minutes I am told that I had a major seizure and at that stage I almost died.

Fortunately, the staff in A&E did an amazing job and I was stabilised and transferred to critical care. Because I was so unwell I was kept in a coma. I was given a cocktail of drugs, including strong antibiotics because the doctors did not know what was causing my condition.

In the first 24 hours, the doctors tested me for a variety of conditions and initially my liver and kidneys were not functioning properly. They were also concerned that my heart was damaged. The doctors wanted to give me a lumbar puncture to test if I had meningitis, but my blood platelets were so low that they could not undertake this.

Over the next three days, I had CT and MRI scans but I was too unwell to bring me out of the coma. Finally, after five days I was well enough to come round on critical care and at that stage a lumbar puncture had been undertaken and it was confirmed that I had bacterial meningitis. Fortunately the antibiotics I had received throughout were helping me to recover. The bacteria causing my meningitis was meningococcal strain Y, which is very unusual in the UK.

My mum had also noticed that my legs seemed to not be responding and when I came round, I recall everyone asking me if I could feel anything from the waist down and I could not. I could not move any of my lower limbs.
A few days later, I was transferred to the paediatric ward and then a week later onto a rehabilitation ward. My lower limb weakness started to gradually improve through intensive physiotherapy and I started to get some sensation and movement back over the next few weeks. 

Five months later I was discharged from hospital and was able to walk very short distances with crutches. My recovery continues, but I expect to continue physio and hydrotherapy for some time to come and at this stage I cannot be certain of the full extent of my recovery.

Looking back, I feel on the one hand truly grateful for the care and treatment I have received that saved my life and aided my recovery. On the other hand, I feel frustrated that I was unwell for several days and that the health professionals did not pick up that something more serious was going on. 

This has inspired me to work hard and raise money for a very worthwhile cause – I am very supportive of the work to develop a vaccine, but also am concerned to raise awareness amongst the public and health care professionals of the variety of symptoms that meningitis can display. If, through this, even one life can be saved, that will be an amazing thing. In the years since, I have worked very hard on my education and am currently in my second year of studying applied clinical psychology at the University of Exeter. 

Meningitis Now have helped me through every stage of my illness. Whilst I was in the hospital, my parents used the Meningitis Now helpline - the helpline gave them information about meningitis when I was first diagnosed. This help and support was invaluable for my parents when I was very unwell as any questions or concerns that had were answered. 

Whilst I was I hospital I received a visit from Meningitis Now’s founder, Steve Dayman, who answered any questioned I had and told me all about the charity and the many ways it could help me. Since, I have started working with Meningitis Now, I have raised money through selling Meningitis Now merchandise. I have also spoken at the House of Commons and at Universities to raise awareness of meningitis. I want to continue my work and raise more money and awareness of meningitis. 

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