Rochelle Soucy's story

Ever since I was a baby I've had numerous health problems, I would be perfectly fine one minute and then in hospital or at the GP the next. My parents have spent their lives in and out of hospital with me and to this day I remain a medical mystery.

Just after I was born I developed impetigo. The blisters caused by the infection all over my body didn't heal properly and they developed into pus-filled sores that took forever to heal.

At the age of 11-12 months I had a significant pseudomonas infection, I required long term antibiotics and stayed in hospital for three months – I learned to walk in hospital, instead of at home. The doctors and medical team noted that I had neutropenia which means I have a low number of neutrophils, the most important type of white blood cell. This explained the bacterial infections.

When I was four I had septicaemia following an insect bite to the inside of my right knee – the scar still remains on my leg.

At age seven I was admitted to hospital with pneumonia. At the age of eight I was referred to Professor Cant at Newcastle General Hospital. At this time I was having recurrent skin infections which required frequent treatment.

I had a bone marrow aspirate at this time (due to my half sister having leukaemia throughout her childhood and teenage years). No diagnosis was found from this....

On the 20th of February 2007 I started my day at high school as normal. I was feeling perfectly OK in my health and generally happy. I remember going to my lessons as usual and having a good appetite at lunch. I felt fine until sixth period. During that lesson I began to feel sick and my head began pounding. It was so bad I couldn't concentrate on what my classmates or the teacher were saying. I asked if I could go to the toilet and get a glass of water but my teacher refused.

I arrived home after a half hour bus journey, and got myself water and some pain killers. They did not relieve my headache. It was about 5pm when I went to do my chores and as I was washing up I started to feel really hot, then I would start shivering violently and feeling ice cold. My head was still pounding so I called my dad. His words to me were 'lay on the sofa for a wee bit, I'll be home from work in 15 minutes'. My dad arrived home at 5.45pm. I was lying on the sofa, extremely lethargic and couldn't stand or sit up. I could hardly move my head or keep my eyes open. I remember him talking to me but don't know what he was saying.

My mum arrived home at around 6.15pm and at this point I started to vomit violently, still had a fever, was lethargic and my head was still pounding. Dad had put me on a camp bed by the fire and tried to keep me awake, but I couldn't keep my eyes open. I then started to vomit again, which continued until 10pm. They called 999 when my breathing became erratic. The woman on the 999 call wanted to speak to me but I couldn't talk, and she wouldn't put the call through to the paramedics until she had spoken to me. This was the last straw for my parents and they demanded that I needed an ambulance urgently. After ten minutes on the phone she eventually put the call through to the paramedics and they arrived within ten minutes. When I tried to stand up I couldn't, I had a pins and needle sensation up my legs and it stopped at my waist. When they helped me up I just collapsed to the floor again.

They blue lighted me to North Tyneside Hospital where they shone lights into my eyes (to which I reacted badly and looked away wincing), they also poked my foot with an instrument. I could feel it on one foot but not the other. At this point my dad actually collapsed and got hooked up to an ECG machine on the bed next to me.

I was diagnosed with pneumococcal meningitis and septicaemia and kept in hospital for five days and then transferred to Newcastle General for another week and a half. I was in isolation for the majority of the time. For the first couple of days I was pretty much unconscious and on an IV drip. On the fourth day I was able to eat, drink by myself and sit up. However from the waist down I was paralysed and still had the feeling of 'pins and needles'.

When I was transferred to isolation at Newcastle General I was able to eat and drink OK but was still unable to walk; each time I tried I found myself on the floor. I still had a pounding headache and was very weak. I had MRI scans and blood taken, each showed the infection in my body.

After I recovered I was sent home and had to have a district nurse come out to give me medication by IV. I recovered well with no permanent damage to hearing or sight and the paralysis in my legs was not permanent.

I went to continuous appointments with Professor Cant and it was discovered the strain of meningitis I had first was pneumococcal type 18C and my immune system had a very poor response to this. My body seems to not recognise or remember this type as an infection and therefore when it does respond to fight it is too late. I was given amoxicillin to take twice a day for life. I have also had vaccinations to stop pneumococcal meningitis but they decay in my body and are not remembered.

This year (2011) on the 14th of June I contracted pneumococcal meningitis and septicaemia yet again. I am living with my boyfriend now and this took place at our flat.

The day before my right shoulder suddenly became excruciatingly painful. I could not move it and the muscles down my arm were extremely weak. I couldn't lay on it and ended up not sleeping that night.

On the morning of Tuesday 14th my boyfriend left for work at 7.50am after making sure I was feeling OK. At that time the only thing wrong with me was the pain in my shoulder. I called my mum and dad to let them know about the pain and my dad told me he would make an appointment at the GP surgery and told me he would be there for 9.15am. I got myself up, had a shower and washed my hair feeling fine in myself apart from the pain. I managed to get dressed with a bit of a struggle, dried my hair and did my makeup like on a normal morning.

I wasn't until I stopped and waited for my dad to arrive that I started to feel really drowsy and lethargic. I started to feel really sick and had a headache. I started to worry it was something serious.

My dad arrived and I told him I needed to go to hospital. He said we should go to the GP as we had the appointment. On the way to the surgery I was violently sick four times. I was in a bad state sitting in the doctor’s room – not able to concentrate, headache, shivering/hot fever, generally not with it, lethargic etc. The doctor told me she would contact the ambulance on a non-emergency call and in the meantime I should take paracetamol and drink some water. I did this when I got to my parents’ home but they came back up as I vomited again several times. I laid down on the sofa and put a blanket over myself. I don't remember anything until I was shaken awake by a paramedic. I remember moaning and complaining of how I was feeling, I wasn't able to tell them some information and I remember feeling quite disorientated. They put me in the ambulance and I deteriorated badly and they blue lighted me to the Royal Victoria Infirmary in Newcastle. I remember waking up in a ward to four doctors surrounding me. In that time I’d had two MRI scans and the doctors had told my parents I may have to be moved to intensive care, and they didn't know if I was going to be lucky enough to make it through a second time.

After the first night in hospital the chance of survival improved and I was awake and chirpy one day then sleeping and feeling ill the next.

I remember on a bad day when the doctors were still unsure if I would make it through I held my mum and cried 'Am I going to die? Please don't let me mum, I've got so much left to do'.
I remember her telling me I would be OK and not to think like that.

I remained in hospital for two weeks, and gradually got better. I was allowed to return home and a district nurse had to come and continue my IV treatment.

My shoulder was diagnosed as having septic arthritis, however it is unknown if this was linked to the meningitis or not.

I had a follow up appointment and it showed I have a possible toll like receptor defect and still have a poor response to type 18C. It has been shown that patients with toll like receptor defects can have recurrent problems with pneumococcus. The doctors are still awaiting the information about the type of meningitis of my recent infection and my specific antibody results.

I am now taking 500mg of penicillin twice a day for life instead of amoxicillin.

I still remain a medical mystery but it seems more information is being found out about me to explain everything, but to this day why I have been through what I have is not clear.

When I see people who have suffered this disease and come away with after-effects or disabilities I feel guilty that I have been through it twice and have come away with nothing wrong. I feel for the people who are suffering bereavement too and you are inspirations to the people who have been through this and not lost a relative or loved one.

There needs to be more awareness of the severity of this disease and how it affects the people and relatives that have gone through it.

I am now aiming towards becoming a paramedic.

Thank you for taking your time to read my story :) x

Rochelle Soucy
September 2011