Barbara B's story
On the morning of 17th July 2007 I was particularly happy. Summer Term had just ended so I had 6 weeks of holiday from my Teaching Assistant job ahead, my husband was coming back from a 3 week research visit to Australia on Friday and my first grandchild was due in August. Life seemed very good – I was listening to Women's Hour, and my 16 year old son was asleep as usual upstairs. I felt a need to rush to the downstairs toilet and whilst sitting there fell forward with agonising and unexpected pain. I recall trying to shout my son's name but being able to do so only weakly. After what seemed like hours, he arrived sleepily at the toilet door and asked what was wrong. I replied 'this is the worst pain since childbirth' (already acknowledged in my family as the gold standard for pain after two 3 day labours!) and he said' better ring an ambulance then'……I recall a paramedic trying to open the toilet door to get to me, and then...
I awoke 8 days later in Intensive Care.
So this part of my story is what everyone told me later. I was admitted to A&E and there were several hours of uncertainty as to what was occurring. Fortunately an experienced Consultant passed by and noticed how ill I was and took over the case, sending me for an X-ray which revealed air in the abdomen which meant a perforated organ, probably a bowel. He arranged for emergency surgery as the contents of the bowel would be leaking into the body effectively poisoning my system. The operation took place in the middle of night and lasted several hours – nearly a foot of bowel was removed and a stoma created to allow the bowel to heal. There had been a lot of bowel content dispersed over the body and severe sepsis had set in and after the surgery I was taken to ICU ventilated and sedated and not expected to survive. My husband was called back as a "life and death" emergency from Australia, and one of my sons recalled from Sri Lanka; both told that the odds were against my survival.
I meanwhile was in a horror movie in my head where I was being held prisoner in the desert in the Middle East and then taken to an institution where I was to have my organs harvested whilst I was still alive. (I only learned much later that such hallucinations are normal and a result of both the drugs given and the general sedation experience).
When I awoke I saw my husband who I knew to be in Australia hovering at the end of the bed like a hologram and assumed it was some new Skype phone development where he could send me his picture whilst telephoning from Australia! He was unable to convince me that he was actually in the UK or that I had had emergency surgery and a colostomy. I assumed that the staff were lying to him too (paranoia is also a key feature of a stay in ICU). On the afternoon of my first awakening I had an unforgettable hallucination of my stepson being refused admission to the ward as we don't share a name, and pretending to be a doctor to see me, being arrested and then telling the policeman that he did it because I'd been like a mother to him...
My first memories of being awake on ICU are of being handled for procedures and how horrible that was, and of a lot of things that turned out later to be imaginary: of trying telling the staff I had soiled myself (when in fact I had a stoma), of thinking I was talking to people when in fact I had a tracheostomy, of hearing conversations where the staff were saying my husband was complaining about my care and I should be punished as a result, of seeing a family of people of reduced stature visiting the bed opposite, of hearing a nurse say to another "isn't she horrible –she's always trying to hold your hand", and thinking that when I asked for help the nurses deliberately turned their back on me. All these things aren't 'true' but they are still very real memories for me in a period where I have 8 missing days. For a long time afterwards I asked everyone I saw for information as I tried to fill that time in, but eventually you realise that no amount of people telling you things will ever fill that gap. I wish I had photographs (which my husband asked to do but wasn't allowed) and a diary, as I found out other ICUs do.
My hospital has an intermediary ward (SACU) where I stayed for 2 nights with more support before being 'abandoned' as it felt on the main ward where many of the staff didn't even know I'd come from ICU. There was a liaison nurse from ICU who was the first person to explain about the hallucinations but I only saw him once.
I was in hospital for 5 weeks and by the time 6 months had passed and I was not recovered physically or mentally I began to try and find out more via the internet. My medical condition of Perforated Bowel I could find no support groups for at all, although the Colostomy Association was very helpful, but what I really wanted was to talk to someone about my nightmare memories of ICU and could find very little until a chance discovery of this wonderful website. I read everyone else's accounts and cried with recognition and relief. As a result of reading about after care I emailed my own Critical Care Consultant and got a full de-briefing appointment, and two visits to ICU, one with the liaison nurse. This was fantastically helpful and I would encourage anyone who hasn't done this to do so. My consultant said there is no money for Aftercare but he would love to be able to offer it to patients who want it. I think these visits prevented me having PTSD.
Information is what I needed – the little things, like the ridges on all my toe nails where the nails had stopped growing (Beau's lines) when I was in ICU, the hair loss, the skin peeling off, the memory problems, the massive muscle weakness, the length of recovery, the weakness and fatigue which felt like it would never end. The sudden crying, the being so easily startled, the anxieties about seemingly little things, I needed reassurance that it wasn't just me.
It is now over 3 years later, and I am at last feeling like me (and yes – that's how long it can take…..). I had three further surgeries after the one that admitted to me to ICU and those were distorted by my bad memories –I came to the ward with a lot of baggage as a senior nurse said to me. But I am now fitter and more healthy and can swim 30 lengths three times a week. I have a lot of residual anxiety and feel my mental strength is not as recovered. I took part in the research project on the transfer to the ward from ICU and found meeting other survivors an emotional but very helpful experience. And I love the medical soaps on TV and I am always looking out for things that happened to me!