Danielle’s Story – Guillain-Barre Syndrome (GBS) at Bournemouth ICU
‘Finally in a few months I’m off to my lifelong dream trip to Vietnam and Cambodia, well so I thought’.
Night of the 7th January 2019 (due to fly out 8th), I started having unusual intense pins and needles in my hands and feet, the next morning this got worse. I felt unsteady on my feet so made an appointment at the doctors that morning. I was informed nothing was wrong and I was probably just worried/anxious about my travels.
8th Jan, my dad took me to the train station ready to start my journey, my legs went, I didn’t feel right so went home. My mum called 111 straight away, within minutes an ambulance arrived, I was then admitted that night. On the A&E ward there were lots of nurses/students, running tests and I was moved to AMU. The morning of the 10th I was diagnosed with Guillain-Barrè Syndrome (GBS), intensive care was on standby, they were monitoring my breathing and decided to start me on ivig which was a five-day course. The Neurologist came to see me to explain what will happen and informed me it’s going to be a long journey.
14th Jan, I moved to ward 3 (general medical ward). Over these days my body got progressively worse my whole body was giving up shutting down.
15th Jan, I was moved to ITU where they intubated me and put me on a ventilator. They fitted a tracheostomy whilst I was asleep. When in my coma I could hear family and friends, my dad read newspapers and magazines to me. 11 days later they woke me up, but I was put back to sleep and they tried again the next day.
27th Jan, Day 12 I was now awake, but I could only see and hear. I couldn’t move. I was like this for 2 weeks in ITU. Once awake I couldn’t feel anything had no movement of any muscles (felt trapped in my own body) no way of communicating. I was so frustrated as I was so thirsty and couldn’t communicate this. I was given a motion bed as moving me was so painful. At this time, I was at my lowest, didn’t want to accept help, or be a part of the outside world. The call bell on my head/bed, was a great relief, the nurses knew what I wanted without me speaking ‘They heard me even though I couldn’t speak’. Over time this got easier as and when I could use my lips. I had a visit from a patient which helped even though I was jealous of him. This was a really depressing time for me, Jen (physio) and Rosanna (Occupational therapist) both recognised this so helped me by creating a weekly calendar, nails, massaged decorated my bedspace and brought Timmy (my dog) into see me, which lifted my spirits, the communication board was excellent as I had something to look forward too. When they started to transfer me onto a seat, this was scary and very painful.
Day 26 (Feb) 2 weeks had passed feeling started to come back, I could do a shoulder shimmy! I started to feel pain (which was good, so the doctors said!) I could start to move my head. The breathing support was being reduced so I started taking breaths myself, which was scary at first but I soon got used to it.
Day 34 (Feb) the trachy was removed so I was able to breathe on my own. This was a very strange process in recovery, being able to talk again, the feeling was amazing! Having my first drink, cake and yogurt which was lovely, the taste was so good, every swallow was scary!
Day 36 (5/6wks) I was due to visit the ward but a bed became available earlier so I was moved down to ward 2 (lung ward) during the night, which wasn’t good as my mum couldn’t stay and had to come back in visiting hours which was at 2pm. Jen (physio) decorated my bedspace which really helped as I struggled with the transition. Weeks in here were tough and tiring but very rewarding as I was starting to get better, these weeks went a lot faster than intensive care. There was talk of moving me to rehab ward but I still had the PEG (which has to stay in for 3 months). At the end of March 2019 I got discharged, had 1 weeks’ worth of physio and was back in, as I woke up and couldn’t feel below my knees this lasted for 2 days residual due to fatigue.
I then stayed for another month (April) had ITU on standby, my breathing was monitored again and physio continued to support me. Trying to build up my muscles again I started to get really bad pains in my tummy they scanned me and put me on morphine for the pain and suspected I had passed a stone.
Follow up clinic, was very helpful – to see the ward bed space this was so different it was a happy place. Great to be able to ask questions. I saw Cat (ward sister) and Jen (Physio) for around an hour this was beneficial for the staff too, a great feeling for all.
Then in August 2019 I had bad pains again had a scan and they found gall stones, so I was put on a waiting list to have them removed.
October 2019 I was in Scotland had tummy pain again went to hospital was put in isolation as my infection levels were really high. They kept me in for 2 nights, were going to operate but decided this wasn’t the best option as it would be better for me to have the operation back at home. I was very shocked that they couldn’t get my health records, they only went on what I had told them.
When I got back home, I wrote a letter to my consultant and received an appointment for 7th November 2019.
I will be discharged from my occupational therapist at the end of January 2020 and have my physio appointment in February 2020 to hopefully be discharged but feel slightly anxious as I’m losing my connection and advice. My speech therapy clinic is booked in for March 2020.
I’m still in contact and have appointments with my occupational therapist Pauline as I have fatigue issues and she has helped me amazingly with my employer adapting my roster at work. My first speech and language therapy appointment is tomorrow (19th Aug 2020) as voice weakened and swallow bit weaker most likely due to the tube and GBS weakening the muscles
I enjoy going back to visit the unit and staff and will always keep the connection. I’ve started to see another patient that was in ITU but has now been moved to ward 2.
Overall, I am recovering well and just want to help fundraise and raise awareness about GBS and the amazing charity I do this with is GAIN charity…www.gaincharity.org.uk
I am continuing to write my book and managed to get another couple of chapters written during lockdown. I look forward to the day it’s completed and can hopefully help others going through the same things.
Massive thanks to the NHS. The work they do is outstanding and they saved my life.