Autoimmune Encephalitis Lived Experience – Polly’s Story

Below is Polly’s lived experience of autoimmune encephalitis.

My name is Polly, I’m 23 years old, and on 25th April 2018, things took a bit of a turn for the worse!

At the start of January 2018, I packed my bags and set off to New Zealand on a working holiday visa.  I was having an amazing start to my year away, travelling around this beautiful country, I bought a car, found my perfect job as a horse-trekking guide, and started to fall in love.

A week prior to 25th April, I started to develop flu-like symptoms. You know, the usual snotty nose, sore throat and a headache. There was a bug was floating around at the time and a lot of people around me were feeling the same way, so I dosed up on paracetamol and ibuprofen and thought no more of it.

Polly was working as a horse-trekking guide in New Zealand before falling ill

At the start of that week (16th April), me and my boyfriend, Luke, had a few days off work so we travelled around Taupo and the surrounding areas. We started off by visiting a natural hot spring along the Waikato River; of course I kept my head above the water as I knew that a lot of nasty bacteria thrive in that kind of environment.

The following day, the flu-like symptoms went up a notch. We had a white-water rafting trip booked and I wasn’t going to miss it, so I took some more paracetamol and ibuprofen and geared up for the rapids.

The next day, we planned to hike 19 km across the Tongariro Alpine Crossing, but when I woke that morning my head was pounding, and my eyes had a slight sensitivity to light. There was no way I was going to complete a 19 km hike, so we planned to come back another time, packed up the car, and headed back to our place so I could get some rest before work the following day.

The next couple of days continued with the same flu-like symptoms, with nausea and a slight fever added to the equation, and the headaches and photophobia worsening. It was getting to the point where the photophobia was so intense that all the lights had to be off in the house. The only exception was the fire for warmth, but I still wore sunglasses to try and help.

I was still getting up for work every day as I usually do when I have the flu. Getting up and keeping busy always helps me get over the bug quicker, but this bug was persistent.

By now it was Sunday 22nd April, and I was still feeling the same with an added symptom of tight chest pains that came and went.  That evening I phoned home in the UK to catch up, and spoke to my mum about how I was feeling. She badgered me to make an appointment to see a doctor but stubborn old me would not listen. Eventually I agreed to stop my mum from worrying, and said I would see one in the week after work.

Polly in hospital

The next two days were by far the worst I had been. I was busy at work, so I just pushed back how I felt and powered on with the day.  It was when the evenings came that I felt the full force of the flu. The fever had heightened, I had extremely bad headaches, photophobia, nausea and I was off my food; this is not normal. Anyone that knows me knows how much I love my food! I was also noticing behavioural changes. I was having mood swings, and, to quote Luke, I was being ‘a grumpy cow’.

It was the night of 24th April, and I was at the restaurant where I worked grabbing some dinner. I had a mouthful of pasta bake and could not stomach one more bite. I said goodnight to everyone and headed to bed.  By 18:30, I was in bed with my symptoms hitting an all-time high; I was happy when sleep came. At around 21:30, I woke up to go to the loo still feeling awful and groggy. Luke was on the sofa, so I told him how I felt, and I headed back to bed. I woke 8 days later from a medically induced coma.

What happened in those 8 days you ask … a lot.

Luke found me in the morning of 25th April semi-conscious and covered in luminous green vomit, only responding to him in mumbles. He raced off to grab my boss for help. He was only gone about 10 minutes, and by the time he returned my state had worsened and I couldn’t even respond when he asked me to. Apparently, I was just staring into thin air.

An ambulance was called, and not long after their arrival I had a tonic/clonic seizure whilst being transported from the house to the ambulance. To this day, I can’t remember that any of this happened.

On arrival at the local hospital, I was admitted to the emergency department, and not long after I was transferred to the intensive care unit where I was put into quarantine in case of an infectious disease. They still did not know what was wrong with me.

After speaking to Luke and finding out that I had been in hot springs and fresh water from rafting, the doctors started to work towards a diagnosis of amoebic meningitis/encephalitis. I was intubated, ventilated and treated with anti-microbial, anti-viral and anti-amoebic drugs.

I was showing more seizure activity, so I was sedated even more and started on levetiracetam, an anti-epileptic drug. I was sent for numerous tests, including X-rays and CT scans. A lumbar puncture was postponed for a couple of days due to my brain being too swollen.

By now, Luke had contacted my family back in the UK, and after speaking to one of the doctors who was looking after me, both my parents, three siblings and my young niece booked flights for that day, as they were told that I was going to die.

I cannot imagine what my family were going through, being woken up in the middle of the night to that news and not being able to get to me until two days later. It must have been shattering, not just for them but also for Luke and my friends in New Zealand.

When my family arrived, they were sat down for a briefing before seeing me; they were told of everything that had gone on and to be prepared for the worst. My mum described to me later what she first saw; I was in a room with about four machines surrounding me; there were lines everywhere, I had them going into my neck, hand, wrist and groin. Everyone who entered the room had to wear protective clothing in case I was infectious. She said she had seen nothing like it.

On 28th April, I was transferred by air from the local hospital to the intensive care unit of a major city hospital for further treatment. According to my medical records, I had severe sepsis/meningoencephalitis. That evening I was sent for another CT scan.

The next day, I was sent for more tests; another lumbar puncture, EEG, and a CT on my abdomen as fluid had built up. The fluid was aspirated from my abdomen and was sent away for testing (it later came back clear). My renal (kidney) function was worsening by this point with the amount of antibiotics and steroids that I was on, so I was put on insulin for a while.  The following day, I was sent for an MRI and another lumbar puncture was taken.

On 2nd May, a line called a vascath was put into my neck to start plasmapheresis, a procedure that filters your blood and removes harmful antibodies. I had five of these procedures in total. Around the same time, the doctors started to try and wake me from the coma. Everyone around me was happy as my eyes started to flicker and I was responding to them by squeezing their hands and moving my toes.

I don’t remember much from the first few days of being woken up, but I dreamt A LOT.  It was scary. It was constantly night-time in my dreams and I was weak and vulnerable. I have never been scared like that in my life. It wasn’t just the dreams that scared me but the hallucinations I was having, I was freaking the hell out!! The only good thing about the dreams was that I already knew that I was in hospital, so when I fully regained consciousness, I knew that I would be in a hospital bed and not in my bed that I fell asleep in 8 days ago.

Everything was looking up, my body was responding to the plasmapheresis, I was communicating more each day and the medical team were happy with how I was improving. Then I developed ventilator-acquired pneumonia! Whilst not uncommon, it was a setback.  The doctors and nurses were on top of it and it was treated with antibiotics, but unfortunately due to this my lower left lung had collapsed so I was re-sedated for my comfort and a bronchoscopy was performed.

My breathing tube was taken out and replaced by a nasal cannula tube that fed me oxygen.

I was awake more now and my first real memory was of my brother walking into the hospital room. Floods of tears ran down my face. I could not control it. My eyes were the only part of my body I could move, the rest of my body was in a state of paralysis. It was extremely frustrating. I wanted to talk to my loved ones but no matter how hard I tried my mouth would not move, let alone would words form. But I was persistent and eventually my mouth opened, and I tried to form words, and a crackle escaped; it wasn’t a word, but it was progress!! My throat was extremely sore, and I was gasping for some water, I wasn’t allowed any as I would just probably choke on it.

I was becoming more conscious now and I was gaining more control of my body, my words were turning from a crackle to a whisper, I could move my hands a couple of centimetres along the bed, and despite my mouth moving more I still wasn’t allowed water but I was allowed the best treat of all at that point…. an ice cube! I was allowed ice cubes to suck on and it was the best thing in the world!

Not long after, a dietitian came to see me and my eyes lit up as soon as I saw what was in her hand, a small cup of water and a yoghurt! This was a test to see what my oral intake was like; it was fine, and I was allowed small amounts of water and a yoghurt from now on.

By now it was 4th May, and I was moved to the neurology ward. I didn’t realise until this point that I had a nasogastric tube in (a feeding tube that is inserted through the nose to feed you your daily dose of protein). It would stay there until I was back on a normal diet.

Slowly each day I was getting better, moving more, regaining my speech, and was put onto a soft-food diet. Being bed-bound sucked, and anyone that has been in hospital knows how degrading it is for someone to bed-bath you and wipe you after you have been to the toilet; I was pretty mortified.

In the following days, I just had to keep working on myself; my family were feeding me my meals as I still could not move too much. I had a physiotherapist come and get me sitting up in bed, it felt like the room was spinning at 100 mph! We did this a couple of times and when the room did not feel that it was spinning so fast, I was hoisted out of bed into a wheelchair and out of the ward for a little bit.

The day finally when I was completely tube-free; no oxygen, no nasogastric tube, no vascath, no IV and no catheter.  It was shower time, and I had never felt better. I was finally back on to solid foods and I had the strength and mobility to feed myself. I had tremors in my hands, so it was small mouthfuls at a time!

It was now a week after being moved to the ward, and the medical team were happy for me to be transferred back up to the local hospital. I still could not walk but I was gaining more movement each day. I was transferred with a primary diagnosis of autoimmune/post-infectious encephalitis.

I spent a week recovering in the hospital. I went through more physio which was very challenging! It turns out that learning to walk again is pretty damn hard! I first used a crutch and when I felt I was ready just my own two wobbly legs!

My body had been through so much, my weight went through dramatic changes; my usual weight hovers around 54 kg and I went up to 71 kg! This was due to the amount of steroids and medication that I was on. By the time I left the hospital, I weighed 51 kg.

It was 10th May, and I was ready to be discharged!! 🙂 🙂

I had one last blood test, waited for the results and I was cleared to go! Walking out of that hospital felt amazing!

I spent a further month recovering in New Zealand, slowly weaning off my medication and gaining enough strength to make the journey home. I had a follow-up with my neurologist who cleared me to fly.

I spent the rest of 2018 recovering, physically and mentally, back in the UK. I went for follow-ups with a neurologist in the UK, and, as I was feeling some discomfort, she ran a few more tests: an MRI, an EEG and a chest X-ray. All came back normal except the X-ray as I have some scar tissue on my left lung that collapsed.

I weaned off the last of my medication in September, and I was finally feeling back to myself again… well with some added memory problems!  But much, much more like me.

With autoimmune encephalitis, there are chances of relapsing in the future. I try not to let that bother me but it’s the first thought in my head when I start to get the flu or when I wake in the middle of the night with a headache, but I am one step ahead of it now. I know the symptoms and I will be straight to the hospital to hit it on the head before it ever gets to that stage again.

By November, I was ready to get back to what I started but first I spent Christmas with my family and celebrated the New Year! Once that was done, I booked my flight, packed my bags and set off for New Zealand again to do my year that I didn’t get to do. Now I’m here, living my dream.

I discovered Encephalitis International late last year while researching my illness and trying to understand more what happened to me. I was at a real low point, and reading through everyone’s stories made me feel not so alone. I could relate to every single one and it picked me up out of that low point and gave me the motivation that I needed!

This is why I am telling my story. If I can help others in their recovery like other people’s stories have helped me, then I don’t mind sharing all the nitty-gritty bits 🙂

For more information on autoimmune encephalitis, please visit our website. For more lived experiences of autoimmune encephalitis and other types of encephalitis, please view the stories page on the website.

Polly today