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Sophie R's story

15th April 2015

Sophie, 23, from Reigate in Surrey, counts herself as fortunate to be alive after contracting meningococcal meningitis and septicaemia

Sophie R's story

The disease cost her amputations and has prompted her to launch a crusade to raise awareness of the signs and symptoms. Sophie tells her dramatic story here.

“It was 4am. I woke up, vigorously shaking, my organs feeling as if they were trying to burst out of my chest. I tried for 30 minutes to get my shaking under control, but it just got worse. I could not warm up. My partner Matt woke up and asked if I was okay. We cuddled up together to try and get me warm. Again, to no avail.

I had gone to A&E the day before with severe rib and chest pain and vomiting, but was told I had a viral bug, even though my white blood count was through the roof! They decided to discharge me and I took their word that everything was fine and it would pass. BIG mistake.

The next sentence that came out of my mouth shocked me but I knew it was the right thing to do. ‘We need to call an ambulance.’

Paramedics arrived and upon quick assessment diagnosed me with having a panic attack. The horror waved over me. I knew this was wrong. I was quite calm. Why isn't anyone taking me seriously?

After 45 minutes of sitting on the drive, IV bags being dropped on me, having my blood sugar taken again and again we finally started to make our way to hospital."

I knew something was terribly wrong

“The paramedics didn't seem concerned over the deep purple rash spreading up my legs. Only Matt was. I couldn't see it that well myself. I was so weak but by the look on Matt’s face I knew something was terribly wrong. I thought I was going to pass out at any second but I kept awake, determined to show a doctor and make them see I wasn't being dramatic.

The last thing I remember is a mask being put over my face and a soft voice telling me I was going to go to sleep.

At 12:25 I went into cardiac arrest. After four rounds of CPR and adrenaline they got me back. The time was now 12:35.

Then my family was given the awful news. ‘There is nothing more we can do for her. All her organs have shut down and she can't breathe on her own.’

My parents had flown out the previous day to America. No one could get hold of them.

Then, suddenly, Dr Fred Sarge came in. ‘It's a long shot but we may be able to get the ECMO team to come down from St Thomas' Hospital. It will take a miracle but we will try.’"

A 1% chance of survival

“Hours went by. I had a 1% chance of survival but the St Thomas' team arrived and started to hook me up.

Stable. Unstable. Stable. Unstable.

This went on for a while till miraculously and beating all the odds I was ready to go off to London.

The next few weeks were filled with delirium and confusion. I rode on a plane, tried to single- handedly save the world, had a party with quails and got stuck in a massive inflatable slide.

I then started to hear the words more often. Meningococcal. Septicaemia. Meningitis. I knew what Sepsis was. But how did I catch something from coccal pickers?

I finally found out what had happened. My heart rate soared but I remained calm. The ICU staff members were amazing and sat with me well into the night, answering my questions.

After three weeks in ICU and a further month on the renal ward at Guy’s Hospital in London (I had total renal failure) I came home for two months."

Becoming an amputee

“On 7 November 2013, two days before my 22nd birthday, I became a bilateral transmetatarsal amputee. I have a brilliant surgeon, Ms. Rose, and a wonderful plastics team at St Thomas' and I am incredibly lucky to have such fantastic luck on my side.

Since then I have had numerous infections in my right foot. In 2014 I spent just under six months in total on my amazing plastics ward, Alan Apley (who have THE best nurses ever!) at Tommies and a further two months in 2015 (so far!). Everyone at Guy’s and St Thomas' has been incredible; I am so very lucky to have had such first-class care.

The last 18 months have been a blur of inpatient, outpatient, surgery after surgery and it is still ongoing. How did this happen to me? I wasn't at risk? I was absolutely fine eight hours beforehand.

But that is meningitis. It strikes that fast. It leaves no cell unharmed. It wreaks havoc through your body, trying to kill anything and everything it can.

But I didn't know that. I didn't know the symptoms and signs. The rash was the last thing to appear. Not the first."

Learn the signs and symptoms

“Please take five minutes of your time to learn the signs and symptoms. It isn't as rare as you think. I found that out the hard way. You may save someone else's life. Maybe even yours.

Thank you to every single one of you who has helped me through this all. Whilst we still have a long way to go your support has meant the world. Thank you."

Incredibly lucky. Forever grateful.

Your meningococcal septicaemia survivor.