Tuesday 5th November, 2019
Remember, remember, the 5th of November. A peculiar day in British history where we set fire to piles of wood and set off explosions to celebrate that our parliament was not blown up (it is a really, really weird set of traditions if you think about it). Four years ago it became an important date for me, for very different reasons. It is my sepsis survival day. The lead up is usually harder than the day itself, the anxiety with which I anticipate the day tying me up in confusing emotional knots.
I had a hysterectomy for adenomyosis. An elective operation that had taken many years of careful thought and consideration to have. That would cure me of the chronic and debilitating pain I’d endured for decades. Something I needed and wanted. The surgery itself was uneventful and successful, my damaged uterus and cervix were gone. All I had to do was heal and then I would have a brand new, pain free life to look forward to. The vault hematoma and my immune response had other ideas! They ganged up to create a post operative infection and sepsis. I had no idea this was going on. I had never heard of sepsis. I knew I was in pain, but I’d just had fairly major surgery, that was normal wasn’t it? I also knew I felt a little warm, but it was mild that autumn. I had no idea I had a raging fever and an infection, that if left untreated, could kill.
My then partner dragged me to A&E. I could barely walk due to the pain and was asking to be left alone to sleep (not an uncommon response with sepsis as I discovered much later, much like how an animal takes itself off to die). Without him being even more stubborn than I and making me go in, I dread to think what would have happened.
The triage nurse saw me quickly and recognised something serious was going on; I was taken immediately to resus. a place I thought only existed in medical dramas on TV! I was hooked up to painkillers and IV antibiotics straight away – an action that quite possibly saved my life. There is what is called the golden hour in sepsis treatment, and I was lucky, the nurse who triaged me and the Dr’s they called upon thought sepsis and began my treatment promptly. Otherwise. Well, I possibly wouldn’t be here.
I was sent for a CT scan and that was scary as I was left alone in a weird side room unable to get up of the gurney with no-one in sight. From there I was sent back to resus and then on to the gyane ward by ambulance. I found it all rather unnecessary to be moved in an ambulance up the hill from one hospital to another, as if I was wasting the crew’s precious time, but there was no other safe way to transport me and the gynae post op ward was the most sensible place to put me. I was wheeled into the hospital on a gurney and taken to the ward, handover sorted and left in the care of a Spanish nurse called Pilar. I am hopeless with names usually but I remember hers. She was calm and gentle and made me feel safe. I was placed in a bay next to the window and I remember asking to open the window as I was hot. I remember standing by the window, looking out at the fireworks in the distance and hearing them explode. That used to be a noise I longed for on firework night. Now it takes me back to standing by that window and makes me afraid.
My fever got worse during the night. I have flashback memories of the nurses huddled round the Sister at the end of my bed, checking the blue folder in front of her, in the moonlight and lamplight like a beautiful Rembrandt. I think they were reviewing my vitals against the sepsis chart and deciding if I needed to be transferred to intensive care. My belief is that I was only spared that ordeal as there were no onsite ICU beds and that it was more dangerous to transfer me back to the main hospital than leave me where I was for monitoring. Pilar took my vitals every 15 minutes through the night, I started to stick my left arm out in my half sleep, half delirium state on autopilot for her. She startled me awake with a loud cry of “YES! It has come down!” at one point. She was so excited because my temperature was now only 38.5 degrees (101.3F). That this was cause for celebration is both funny and shocking. I’ve no idea how hot I was before it came down as the nurses wouldn’t tell me, but to cheer 38.5, I must have been properly burning up. I also know my blood pressure had been dangerously low and the two things in combination are classic signs of sepsis. I spent the night drifting in and out fevered dreams without knowledge of how ill I was.
When she started her shift the next day, Pilar was so pleased to see me, she must have thought I was going to be taken to ICU or worse, that I wasn’t going to make it. I will never forget her smile and pleasure in seeing me again that day. I will never forget the kindness of the one nurse who held my hand for the 20 minutes it took to push one of the antibiotics into my vein, nor the one who apolgised for the terrible bruising she knew she was inflicting with the canula, nor the brisk ward orderly who ensured I was up and clean each morning, nor the other orderly who moved me to a side room for some sleep one night, each of them gave their time and concern. One was Sri Lankan, another Polish, another Jamaican. The NHS has always been run on the dedication of those who come from overseas to serve and help. Without international cooperation and skills the NHS would die on its arse.
Thankfully the antibiotics were starting to work and slowly, slowly, I began to recover. My temperature and blood pressure stabilised and I was out of immediate danger. I was lucky, purely and simply put, I was lucky. The right drugs given at the right time and a body that responded in the right way. Which isn’t to say that I felt better. Oh no. The triple combination of strong, powerful antibiotics came with pretty hefty side effects. Dizziness, nausea, diarrehea, a feeling like I had electricity crawling through my veins, itching skin inside and out; I had them all. I couldn’t concentrate on anything as it made me feel sick, so reading or using my phone were out, ditto colouring books or TV. I could just about listen to music. In very short bursts. I had no visitors other than my boyfriend, who diligently came every evening after work. I wasn’t allowed to see my boy as he was too young to come onto the ward and he was scared as hell to come see me anyway. He was 9 years old and thought his Mum was going to die. I was torn between desperately wanting to see his face and not wanting to terrify him; I was very thin and pale and had a drip stand in each arm, probably quite a frightening sight to a child.
I’ve written before about how the music I was able to listen to helped to save me. Spotify shuffle chose for me (how did it know?) Presuming Ed (Rest Easy) by Elbow and Good Souls by Starsailor. One helped me to breathe and becalm, the other to remember so many wonderful memories. They gave me hope and light in the darkness and a reason to continue fighting. The treatment was saving me, but it felt like a punishment; I think that will only make sense to other sepsis survivors.
There are moments in those days I spent on the ward that are as real and as vivid to me now as they were four years ago and yet other whole days I cannot recall at all. Flashbacks are really odd things and they come at such strange times and can be triggered by odd moments that I have had no choice but to come to terms with them being part of my life now.
When the Dr came to tell me I could go home on oral antibiotics I cried with relief. I had begun to feel I would never leave the ward again! I had not felt the sun on my face, nor the cold chill of autumnal air, for nearly a week. I walked out of the hospital unaided. I had been taken in by ambulance and now I was walking out. I was extremely lucky. I am, of course, immensely grateful to all the staff who took care of me. Every member of that ward played their part, from the Junior Doctors who seemed to never go home, to the cleaner who snuck me an extra desert, they were all part of the team who gave me care and saved my life.
Little did I know that although the physical battle had been won, that I would now face a psychological one, that would be ongoing. The discharge summary said sepsis, and I still had no idea what that meant. It was some time later, when I googled sepsis, that I discovered just how ill I had been and how lucky I was to have survived. The thing with sepsis is that it is pretty random. Some people seem to be more prone than others. Some survive against all odds and others, who would seem to have a decent prognosis, don’t make it. There appears to be no reason why I got to be a lucky one and someone else didn’t. That in itself is quite a difficult thing to face. And although I am well equipped to deal with many aspects of illness (I’ve a dozen chronic illnesses) this was a potentially life threatening illness and that takes different processing. There is an element of PTSD that is common among sepsis survivors, along with survivors guilt along and sepsis syndrome. The long term effects of the systemic damage caused by sepsis and the antibiotic treatments aren’t known or studied; I’ve no idea what the trauma did to my body and how many of the symptoms I still live with are down to that or something else. The only people who have been able to help me with my sepsis survival have been other survivors, people I have met through the Sepsis Trust, who campaign tirelessly to raise awareness. I owe them a huge debt of thanks too.
Today has been a tough day for other reasons, but I will always remember the 5th of November as my sepsis survival day. I am grateful to be here, but that doesn’t mean I am full of joy all the time. Life is hard. Emotions are difficult and very mixed. It is confusing and conflicting to feel sadness and happiness mixed together. I have been wanting to write these words all day, I need the release of them. Yet they also seem circular, as if I have written or spoken them before, and that they have nor freed me from the pain and grief. The passage of time seems to make the healing all the harder, not easier as commonly held wisdom dictates.
Four years ago I could have died of a treatable disease at the age of 38. Sepsis kills. I am glad I am not one of the statistics, too many others are. We have to change that. If I had known about sepsis before my operation, the risk factors and symptoms, I may not have become so ill. Surgery is a major risk, temperature and pain increases post operatively are warning signs.
The antibiotics that saved me may not work in another 5 years as antibiotic resistance becomes an ever more frightening and real prospect. That frightens me almost as much.
Please learn about sepsis and also please be responsible with antibiotics. We need all of us to be mindful of both to save lives in the future.
Remember, remember the 5th of November, the day I survived sepsis.