Meningitis in your words

Janine Blackhurst's story

  • Location: England
  • Categories: Pneumococcal
  • Age: Adult 25-59
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Headaches
Janine Blackhurst

Hi my name is Janine and I'm a 39 year old female that has contracted meningitis three times.

I first contracted it when I was about five so it would have been about 1979, so I don't remember much about that bout of the illness. I just remember being in Alder Hey Children's Hospital. I believe this strain to have been meningococcus but because the hospital only keep records for 25 years we couldn't get it confirmed.

The second time I contracted it was was around Sunday 28 October 2007. I had been ill for a number of weeks with a cold that I couldn't seem too shake off. I had been out the night before for my now husbands' birthday. We had only been at friends but it was there I developed the headache so we didn't end up staying late.

"On the journey to my mum's I started to feel even worse and by the time I got to my mum's I was in a state"

When I woke on the Sunday I felt terrible and thought god I feel bad and I didn't even drink much. As the day wore on, what I thought was a hangover just got gradually worse and I couldn't settle. I was getting up and going on the couch then back up and back too bed. Around tea time my mum rang to say that dinner was ready and I said to my husband I don't think I can go, as I felt too ill. So he said he'd go and bring my dinner back for me but in the end I decided to go as it might make me feel better, getting motivated and also it was only five minutes away in the car. I then got myself up and had a wash and changed in to some clean pyjamas, put my coat on and went to my mum's.

On the journey to my mum's I started to feel even worse and by the time I got to my mum's I was in a state. As soon as I walked in my mum knew something wasn't right and got on the phone to NHS Direct. By this time I couldn't stand the light and had started being violently sick . The NHS sent an ambulance and I was taken to hospital. During the journey to hospital they were doing various tests and observations and they said my temperature was that high I was cooking from the inside out.

Once arriving at hospital I don't remember too much, I just remember being put in a dark room and then being put in ITC for observations while they did all kinds of scans on my head. All I remember is the pain in my head being unbearable . I don't remember anything after the scans until the next day when I woke on a ward, before being moved to my own room .

"I was woken up after eight days and was like a baby."

I was told by my husband and family that they thought I'd had a brain hemorrhage or something . They then came and took me for a lumber puncture and the results came back as pneumococcal meningitis and I would need 14 days intravenous antibiotics.

I couldn't do anything for myself and wasn't allowed out of the bed . After a week or so I started to feel a bit better and was able to get up out of bed and slowly was able to do things for myself. I remained in hospital until I had all my antibiotics. On my release I had lots of follow up appointments, one being with ENT where they found I had polypus up my nose and I was advised to have them removed and have sinus treatment.

Then a few weeks later I had an appointment at Broadgreen Immunology Hospital to check my immune system. It was there they found my immune to be low, so they thought that was why I had been unfortunate to have contracted it twice. I was then told I didn't have to have the operation, as that was the problem, it was my immune system. They decided they would give me an injection once a month for three months to boost my immune and after the three months it was seen as a success.

On 14 August I developed what I thought was a migraine and took myself to bed only to wake at 6am with the worst pains in my head I'd ever experienced.  I rang my boyfriend (who I was due to marry in 12 weeks) and was crying and with that he rang my mum who came round but I told her I was okay and going to go back to sleep. I was due to be picked up for work at 10.45am and I could hear my lift but couldn't even reach over to the side of the bed to ring and say I wouldn't be in. It was then that my daughter climbed into bed with me worried as she could see something was not right and it was at this point I don't remember a thing again.

My daughter rang my mum, who had gone shopping, so she rang for my brother to come and see what was going on and in the meantime my daughter rang NHS Direct for advice and they sent an ambulance. I believe by this time I was fitting and lashing out and the ambulance people couldn't do anything with me. There ended up being something like six lots of paramedics and ambulance people at my home and they had to remove my bed and everything out of the bedroom as it was hazardous. I had become violent as well because of the temperature and I wasn't responding to the medication they were giving me. They then rang for a doctor to come from the hospital to sedate me so they could get me out of the house.

Once at the hospital I was put straight in to a coma were I remained for the next eight days. They said my temperature was so high my head was ready to explode. I was woken up after eight days and was like a baby. I couldn't do anything for myself and I was saying some really weird things were happening and I really believed them to be true, but it was all the infection. I remained in intensive care for a further nine days and was given physio to help me do things for myself and even walk with a walking aid. All my left side seemed to be worse with my left eye remaining shut . I finally left ITC after 17 days and was moved to a ward. All I wanted to do was go home as I was due to get married in 10 weeks and I was determined I was going to do it.

I left the hospital after about 19 days, still very unsteady on my feet and with one eye shut but I was determined to get myself better.

After coming home I once again had several hospital appointments to go to and going back to ENT was one of them, as they found a hole in my skull while I was in the coma and they wanted it investigating. I also had to go back to the immunologist and it turned out my immune was okay this time, so I was referred by ENT to another hospital for the hole that they had found.

I went to Fazakerley Hospital to see the ENT doctor were I was told that if I wanted to reduce the risk of getting meningitis again I would have to have an operation where they take bone from my leg to fill the hole in my skull and that they'd also remove the polypus from my nose.

As arranged, my wedding went ahead to everyone's amazement. It was a lovely day especially considering I nearly didn't make it.

A month to the day after my wedding I had the operation to fill the hole in my skull but to everyone's surprise when they went to remove the polypus it wasn't actually polypus, it was part of my brain that had grown through the hole and died and it had to be cut out .

I remained in hospital for five days and was then released with all the packing intact for a further nine days when I'd return to see if the operation had been a success.

To everyone's relief it had been successful, so therefore my risk of getting it again has been reduced .

Janine Blackhurst
February 2013