Lucy, 29, from Buxton in Derbyshire, told us her terrifying story.
“I had a rough few months earlier in the year, in and out of hospital, surgeries and endless worry and pain. Lots of people have been so lovely and asked after me and also asked lots of questions. So I thought I would try and explain - this isn’t a plea for sympathy or charity, but maybe it will raise some awareness and also help myself get my head around it all.
“I have a condition called Chairi Malformation, which basically means that my brain blocks cerebral spinal fluid from flowing through my head and spine. I had surgery in 2017 to try and help improve the flow but unfortunately it wasn’t as successful as it could have been, which meant having another surgery on 15 March this year to open the outer layer of my brain to make some more room for CS fluid.
“Unfortunately, I am yet to feel the benefits of my surgery in March as I have had complications during my recovery. I contracted bacterial meningitis.
“On 2 April, my dad’s birthday, we were supposed to be having a family tea at my parents' house, but I started to feel very unwell. I was just over 2 weeks post-surgery, so I had been feeling a little bit off anyway - but I knew something wasn’t quite right.
“I sent a text to my family WhatsApp group asking if someone could come and help me. I couldn’t move, I couldn’t open my eyes, I felt sick and my headache was so severe that I was crying in pain. Mum suggested ringing 111 but it I knew it was too late for that and my mum made the scary decision to call 999 as I needed urgent medical help. I remember being asked questions that I thought were so stupid, but they were excellent at getting an ambulance out; it was with me in what I’m sure was less than 60 seconds!
Like a scene from Casualty
“It was all so scary and so painful, I didn’t know what was going on but the paramedics were brilliant. I was hooked up to an ECG machine and having my blood pressure taken - my living room looked like a scene from Casualty.
“I had a fever and a temperature of nearly 40 degrees but my hands and feet were so cold that the paramedic thought I had blue nail varnish on! I didn’t know this at the time but that is an indication of septicaemia / meningitis.
“I was rushed off in the ambulance to Stepping Hill Hospital, where I was sent for scans and had bloods taken. I was still in so much pain and then the vomiting started, even morphine wouldn’t make it go away, and I was given Diazepam to try and sleep. In the very early morning, I had a lumbar puncture which confirmed the diagnosis - meningitis. It was all so traumatic, and my poor mum stayed by my side for the 16 hours in A&E on a plastic chair. I was immediately put on two very strong antibiotics through a drip before being moved onto a ward.
“I was then moved on to Salford Royal Hospital where my surgical team could continue to treat me and monitor my progress. I was told that I would require 6 weeks of IV antibiotics - Vancomycin and Merepenim.
Started to develop a rash
“I was so weak that my veins would collapse every time they tried to take blood or insert a cannula and I now have a needle phobia! They soon inserted a mid-line into the top of my arm which was to become a more permanent way of administering my antibiotics.
“After around three weeks of being in hospital, I had started to get used to my surroundings, and being hooked up to my antibiotics 14 hours a day, when I started to develop a rash. It was just after the sunny bank holiday Easter weekend and I remember being asked if I had been out in the sun - I wish!
“I was covered from head to toe and itching like mad. I was having an allergic reaction to all the antibiotics so the dermatologist came to see me and the antibiotics were stopped. After many more blood tests and around a week of being monitored, it was decided that I was meningitis free and I could go home. Yesss!!!
“I was home and reunited with Ted dog! But unfortunately it wasn’t for long. I started to feel a lump at the back of my head and I was still suffering with headaches and vomiting. I rang my surgical team who advised that I should return to Salford A&E to get checked out. A CT scan revealed that I had a psuedomenigocele (a pocket of fluid in my brain). I was admitted back onto the ward where I was being looked after where they performed a lumbar puncture. This revealed that there was high pressure in my brain, caused by the fluid. The lumbar puncture eased this pain and after a further lumbar puncture and another week in hospital, the pressure had dropped and I was allowed home again.
“The lump on my head came back along with headaches and sickness and I was again admitted into hospital. Scans revealed I had early signs of hydrocephalus, and I was again treated with lumbar punctures which caused low pressure and meant that I couldn’t move without vomiting. I was on IV pain relief as I couldn’t keep anything down.
Emergency list for surgery
“I was just starting to feel better when I contracted a hospital bug, which meant I was put in isolation and on more antibiotics. I should have been going to Spain on my friend’s hen party but was unable to go which made me really sad. Eventually I was allowed home again, which was great news.
“Unfortunately, I wasn’t at home for long before I started to become unwell again, my eyesight went funny and the fluid was back. Scans revealed I had hydrocephalus which was putting a lot of pressure on my brain. I was immediately put on an emergency list for surgery.
“I now have a shunt which involves a thin tube with a valve being inserted into my brain, the excess fluid flows through the shunt into my tummy, where the fluid is absorbed into my bloodstream.
“I can feel the valve as a lump under the skin of your scalp, which sounds gross but it’s literally a lifesaver!
“I was constantly surrounded by people looking after me and my family and I received so much care and support and I will be forever grateful.”
