Nicole R's story

29th April 2019

Far from home on a trip to South America, Nicole fell ill with a terrifying mystery illness. Luckily she managed to get home to Lossiemouth in Moray before she deteriorated too far. Nicole tells us her incredible story

Nicole R fungal cryptococcal meningitis case study

“'Meningitis’. Just hearing the word meningitis brought a sense of relief but also a sense of fear. For a split second I thought I had the answer to all my excruciating pain…"

“After a very long journey including three flights and car journey back from South America to Scotland, a whole new life was waiting for me."

“For weeks, I had been suffering from extreme headaches which I put down to becoming a new mum and just generally being tired. I was continuously taken paracetamol in hope of relief, and at times it did take the edge off. But the full symptoms did not unveil themselves fully until I travelled to South America - during this time I was constantly vomiting, but again I put this down to possible travels. Once I got to the hotel and had some rest I felt a little better. Or so I thought."

“Within the next day or two, I progressively deteriorated and was unable to drink, eat, stand and was also very sensitive to the light. This was due to extreme swelling of the brain. At the time I never even considered the possibility of meningitis let alone a very rare kind which is known as fungal cryptococcal meningitis and is mainly found in patients that have no immune system."

“After been seen by a doctor three times and having received an IV of fluids, anti-sickness medication and a sedative to try to relax me, I was told I would have to go to hospital. I knew at this point it was imperative to get home - never had I experienced such pain and illness in my whole 27 years of life."

Long journey

“After a very long journey I made it to Aberdeen airport and by this point I could barely stand. My mother-in-law at the time met us at the airport and had to practically hold me up to get into the back seat of the car."

“I don’t know why I never went to hospital in Aberdeen but all I wanted was my home and bed. I kept telling myself that I was okay and clearly I was not…"

“We made it home and I had never felt so relieved but was still in so much pain. By this point I was crying in my bed so I finally agreed to call out of hours. They told me I was just dehydrated and try drink some fluids. The G-Meds (out of hours service) were then called – but it took some time for them to get out, they were unsure what was wrong and decided to admit me to A&E due to my severe pain."

“So here I was lying in the hospital bed screaming in pain, and no-one knew what was wrong. They offered me more paracetamol which was no use to me by this point. After a few hours of observation and trying to retrieve blood a junior doctor came to my bedside and carried out a physical examination, and the first thing he asked me was to try put my chin to my chest, which I could not do."

“My body was so sore any type of movement felt as though my bones were being crushed. He then responded with “I think you may have meningitis”. Finally, an answer and some pain relief."

Lumbar puncture

“I was transferred into a high dependency ward until they carried out a lumber puncture, clarifying the doctors’ suspicions. Time was running out, my brain swelling was causing me to have stroke-like symptoms therefore causing paralysis to my face and loss of senses, I could no longer see…"

“I was sedated and transferred to another hospital, due to potential loss of life. Over the next few days I was critical: I had not only contracted fungal meningitis but I had also contracted pneumonia and severe intracranial pressure due to the virus. By this point it was attacking my full body and brain. I was fitted with a drain in my spine to try release pressure but this did not work. I was too poorly for surgery, but this was the only option in hope of recovery." 

“Days turned into, weeks and weeks turned into months. The pain was subsiding, but my face was still paralysed. I was still unable to see, walk, eat and barely talk but I had my son in my arms for the first time in which felt like a very long time. I was told I was going to be okay."

“I had the surgery on my brain, commonly known as a shunt, which enabled the fluid to release itself into my stomach instead of attacking my brain and potentially causing brain damage. I managed to be released from hospital a day or two before Christmas of 2017 - this was important to me as it was my son’s first Christmas. I have now been in recovery for a year and four months and have learned to walk again, gain the weight I desperately needed and learned how to live a life after meningitis."

“I feel lucky to be here today, but most of all to be here for my son and be part of his magical gift that we call life. I hope my story brings some sort of solace to others and know that there is always light after difficult times."

“From my heart to yours, Nicole (proud meningitis survivor)”.

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