Joe J's Story

25th November 2016

Joe Johnson shared his family’s concerns when his mum became increasingly unwell. Little did they know that she had contracted meningitis

Fiona Johnson -text

Joe shares their story in his own words:

“On Wednesday the 11th May 2016, my mum Fiona went to see her GP with severe shoulder and neck pain. Her doctor prescribed co-codamol. By the next day the pain had worsened and she returned to the surgery. A stronger dose was prescribed and she was advised that the pain was muscular and down to stress.

“Over the next couple of days mum began to feel even worse. She had a temperature, was being sick and had a headache.

“Very early on Saturday morning, all of her symptoms had got much worse. She was screaming with pain and waving her arms uncontrollably, and fell into an unconscious state.

Waiting for an ambulance

“We called an ambulance at 4.45am. We were advised that unless her case was as serious as a cardiac arrest there would be a wait for the ambulance and were asked if we could take her to A&E ourselves. Mum was far too unwell for us to do this and in the end the ambulance arrived after a terrifying hour and a half wait.

“When we arrived at Leicester Royal infirmary mum had a CT and MRI scan. The doctors thought she might have had a stroke, but dad explained her symptoms and they began to consider meningitis.

“Mum stayed in ICU in a coma and we were told by the consultant that her brain had swollen to the extent that the damage to her brain stem was beyond repair. They only held off testing if she was brain dead because she was still breathing by herself intermittently.

They confirmed it was meningitis

“We were told that the swelling was so severe she would never make an improvement and that her condition was terminal. It was at this point that her doctors confirmed it was meningitis.

“On Friday 20th May they fitted a tracheotomy and a brain specialist came advised us that without a proper assessment they couldn’t be sure of the extent of mum’s brain damage and we should not give up hope. This was the first point that anyone had given us any sort of hope for her recovery.

“Four days later mum was transferred to a Brain Injury Unit at Leicester General Hospital. Gradually mum became more responsive. After a couple of days in the unit she began squeezing my hand and was trying to open her eyes.

The slow road to recovery

“Although her recovery has been slow, mum is now in a rehabilitation ward. She has no memory of the days leading up to her coma, but is able to speak to friends and family and her long term memory does not seem to have been affected.

“Physically, she can move her right side but movement in her left arm and leg is limited, and she has lost her eyesight. She’s now allowed home every weekend, and enjoys meeting up with family and friends, going to the shops and out for meals. 

“We are hoping that she can return to her caravan as soon as it reopens in March, and the site have kindly fitted a ramp and decking outside her caravan for easier access.

“Mum’s speech and memory is very good and she is coping well without her eye-sight. Her doctors confirmed that she had suffered a stroke as a result of the meningitis which caused damage to three parts of her brain.

“She’d receiving physio and we are hopeful that as her eyes are not damaged her eye-sight should return.”

Fiona has now left hospital and is enjoying her time at home and regaining her independence.

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