Kay's story

Life changing. Inspiring. Enlightening. All words you think would describe a 'near death' experience. You would expect to wake up every morning grateful to be alive. You would never argue with your partner/children again as you were just so happy to be with them. Like you'd been given another chance at life. Whilst lying in CCU (Critical Care Unit) I remember saying to Ben my husband "that's it, no more rowing" as well as " I'm going to eat healthy, exercise make the most of my life, do what I've always wanted to do" Well 10 months on and I haven't stuck to any of it. We still bicker over the slightest thing, my children still drive me up the wall and I still lose my rag at the smallest thing. Instead of feeling elated that I am still alive what I have actually experienced is near torture. Reliving every minute of being in CCU, desperate to rationalise what happened, why it happened and worrying about it happening again. And in extreme dark times wishing that I hadn't survived. As then I wouldn't be living the mental torment that took up every minute of every day. This is my story of being a CCU survivor.

I was a relatively healthy 27 year old, I did have colds/coughs/infections more than most people, I was always on antibiotics and was used to feeling run down most of the time. It all started around July/August 2009. I was in a demanding job at work. Which I had always done well at, but I started to struggle, I was tired, people were commenting on how ill and pale I looked (always a confidence boost!) And I had a constant mouth full of ulcers. I began bursting into tears at the slightest thing and took things far too seriously, although my illness hadn't started at this time I strongly believe this was the start of the downhill spiral that was to change my life. I found out shortly after I was pregnant. This was an excuse for me to feel how I did. Any ache/pain I put down to pregnancy. In early September I caught a cold that I could never seem to shake off. As usual for me it turned into a bad cough. And as I was pregnant all I was told was to have honey and lemon. This went on for a number of weeks. I remember speaking to people at work on the phone and all id hear was "get to the doctors and sort that bloody cough out!" I didn't bother, to be honest my doctor wasn't the best anyway and I figured as I was pregnant nothing could be done and I just carried on at work. This went on til the end of October, it was Dawns (my sister) Baby Shower on the 28th Oct (I think) and she too had a bad cough, I remember everyone commenting on how ill she sounded and how she ought to get it sorted etc, I did think "er actually I'm ill as well" but I let them get on with it. She's a wuss I thought ill just battle on (joke!) I don't remember much about the few days after this, I have recently looked at work I did in these few days and it's as if someone else had done it, I have no recollection of being at work at all. The week after was when it all started to go horribly wrong.

The Tuesday of the following week I remember quite vividly, myself and a colleague Ian had visited a few shops, one of them Stourbridge. My cough was particularly bad this day and I remember trying to speak to the manager but struggling to get any words out. Late that day Ian went and fetched us a drink, he got me a hot chocolate with cream and this made my cough a thousand times worse, even now I blame him (in jest of course). I went to bed that night very ill indeed. On the wed I had my 20 week scan, supposed to be an exciting time, we were to find out the sex of the baby! I could barely get to the hospital. I went for the scan and got told we were to have another boy. We then had to wait in the clinic to see the doctor, this can normally take 1-2 hours and I knew id pass out first. So in my usual 'diplomatic' way I stormed to the desk and told them if we weren't next then I'd be going home as I couldn't stand. I remember sitting on the floor in the ante natal clinic, I didn't care what I looked like I just wanted to go to bed. We were called in next luckily (see being stroppy DOES work!). The doctor took one look at me and said she thinks I should be in hospital. This panicked me and I began to cry, I just thought I need a couple of days rest and id be fine. She went to ask her superior who told her that I should go home in case it was swine flu. This angers me slightly, it was well publicised that swine flu was dangerous in pregnant women. So I went home. Not even considering that id have swine flu, it never even crossed my mind.

I didn't go to work after the hospital, I went straight to bed. And the next 2 days I can honestly say I have never felt that ill in my life. I was vomiting, in agony with leg cramps, headache, coughing and had an extremely high temperature. My mom phoned the doctors and I got antibiotics over the phone. Again this angers me as every symptom I had pointed to swine flu, but the doctor never even mentioned it. It was a very surreal time. I didn't really see Hayden my eldest son who was 16 months old at the time. I remember Ben saying "cant you just even get him dressed and take him to Maries" (next door neighbour who is our childminder) and I said no, I can't even lift my head. I remember trying to sit downstairs even for 10 minutes but I couldn't, I had to keep going back to bed. I remember my sister in law Steph saying iv bought you some DVDs and magazines and I was thinking, (in fact I may have bit her head off) I can't even look at a TV screen let alone read! My Mother in law Kath said to Ben "if she stays in bed she is going to get pneumonia" little did we know how right she was.

On the Friday I had had enough, I phoned my mom and said I need to go to hospital. I remember her being a bit huffy! We've since laughed that apparently my mom said to Dawn how little I was seeing Hayden, like I didn't care about him. I don't think anyone realised how ill I was, not even me. So my mom come and got me, I packed an overnight bag and we went to the maternity department. My one regret that I will never forgive myself for is that I didn't say goodbye to Hayden, he was right there next door and I just went to the hospital without a goodbye. Hayden had also come down with something and he was booked in for the doctors that evening.

I remember waiting ages in triage. I think I had a bit of a row with my mom over something trivial whilst I was waiting to be seen. Looking back I wish I hadn't, if I'd have known what was about to happen I'd have told her how much I loved her and not wanted her to leave my side. But again we didn't realise how ill I was and hindsight is a wonderful thing. She had to be somewhere anyway so we agreed she'd go and Ben would come straight after work. Ben came and we waited, the doctors finally said I had pneumonia and put me on the ward on a drip. I don't really remember much about the next 2 days. I remember having to get my own meals which was a struggle. And I remember throwing a cheese sandwich at Ben as it was sliced cheese not grated. Obviously that was Ben's fault not Greggs! So I just thought I had a bit of pneumonia, couple of days and id be home. I remember not wanting any visitors. I remember watching x factor. I remember my pregnant sister eating my mince pie but she had to turn her back on me as the sight of someone eating made me vomit. I remember arguing with the nurses as they wanted me to swallow paracetamol but I couldn't face swallowing anything. I think again people thought I was being difficult. And no one could comprehend how unwell I actually felt.

I stayed in maternity til the Sunday, I later found out that the midwives had been harassing the doctors for a while about getting me moved as I didn't actually have a baby related problem, I think they were worried they wouldn't be equipped to deal with anything going wrong. These midwives could really have saved my life. I was moved to an assessment ward for a short time, they then moved me to a general emergency ward, Ben was with through all this luckily, I remember arranging with the nurses for Hayden to come and see me that evening. I felt quite calm and peaceful through all this, and strangely don't remember feeling ill at all. Alarm bells rang slightly when I needed the toilet and they bought me a commode! I remember thinking "I can go to the toilet you know!" Also they started putting an oxygen mask on me which just made me feel suffocated, I kept taking it off and the nurses were getting rather annoyed at this! Ben said his goodbyes and was coming later to visit with Hayden. Looking back the nurses did seem to get quite panicky, I assume now the oxygen levels in my blood were very low, plus maybe I was showing all the signs of swine flu so they needed to get me in a room on my own. When they told me they was moving me to CCU it didn't even click then that something was wrong, I actually think I was on strong painkillers which maybe clouded my panic? I text Ben apparently and said they was moving me and don't bother visiting, my mom and dad were visiting instead and he should stay at home with Hayden, I text my mom and told her to come to CCU instead which must have been worrying for her.

I was wheeled into what was to be my room for the next 4 weeks. I was undressed and put into a gown, my jewellery was taken off and ECGs were attached. Again I remember feeling calm, it's like I was thinking "I'm that ill just do what you have to do", looking back I think id given up. My mom and dad came, my mom broke down. I think the doctors had spoken to them before they come in so they know what was wrong whereas I was unaware at this point. They put an IV into my hand and the nurse was so lovely, I never saw her again sadly but she made me feel very safe. I think I spoke to my parents for a bit but all I wanted to do was sleep. Then I remember mom saying "do you want us to leave you" and I said "yes", I was so tired. That was the last time I saw them for 3 weeks.

It turned out to be swine flu and pneumonia; luckily they had started to treat me for swine flu before the results came back as all the symptoms pointed to it.

I'm unsure what happened next, my accounts may or may not have happened, in my head this is what was happening. They also may have happened in a different order. I will need to fill this in by speaking to people.

Mom- My mom and dad were visiting that evening, I had text to say can you come now as they are moving me to CCU at 5pm. When they got to ward they had already moved me, when they came in my mom says I looked terrible, I was sitting up with an oxygen mask on and kept saying I wanted to sleep. They left me to it. They hadn't been home 15 minutes when they got a call saying to go back as id taken a turn for the worse. I had been on a normal ventilator but it was making me too tired so they were going to put me on an oscillator, I had to be sedated to go on this machine. My mom came to the hospital with Ben, They took them into the relative's room and my mom hated that room and wouldn't set foot in it whenever they came. When they eventually let them in to see a couple of hours later I was unconscious.

My first memory was waking up sitting up in bed with an oxygen mask. The bed was moving, (it was a rolling bed to prevent bed sores) I was really struggling to breathe. I remember Christine the nurse being with me. I remember The Carpenters playing on the radio. I thought I was in labour. That's the only way I could explain the panting I was doing. I remember trying to push, I thought my baby had died and I was in labour giving birth to my dead baby. I thought I was in some ladies hospital where they had to kill my baby for some reason, maybe a disease or infection, or control like in China, id had one I wasn't allowed any more. I remember seeing the large cabinets with drawers in thinking that's where they keep the babies bodies. I remember the cleaners coming in and I thought they were sweeping the remains of my baby off the floor, but they were so friendly. I remember the physio coming and making me cough violently and beating my chest. I thought I'd been gassed as my coughing sounded inhumane. I thought I had to cough something up. I remember Chris being really nice telling me I was doing well, and giving me medicine. I remember the Geordie doctor I can't remember his name asking me if there was too much medicine, this made me think I was doing some sort of experiment. I remember asking Chris how much longer, I just wanted to sleep.

After speaking to Ben and my parents this turned out to be a time when the doctors took me off the ventilator too early. To see if i could breathe for myself.

Next I remember being sat in a chair, I have scoliosis and really struggle sitting up without a pillow at the best of times, I remember saying I just want to lie down, they kept telling me I can't. I now understand that I needed to sit up to help clear my chest. I remember falling off the chair a few times, I crawled to the door and asked for help but they kept telling me I had to sit. I remember the Geordie doctor shouting "Get her on a bed now" that's it, I blacked out.

My next memory wasn't a nice one either. I was lying in a bed and the nurse and an auxiliary were in the room. They had masks on, which I now know was because of the swine flu. They were washing their hands. I remember thinking, "I need to escape" I asked for the toilet, I said I needed my contact lenses (!) I was thinking of anything to get out that room. I remember not being able to breathe. I felt round my neck and could feel wires and tubes; I tried to pull them off. I thought they were going to strangle me. The nurses were saying horrible things to me, about my family not caring, that Hayden didn't need his mom now he's moved on. I felt completely alone. But I still had a fighting spirit and kept trying to escape but my legs wouldn't move. When they left and closed the door I thought I was being suffocated. I remember my voice was weak and I kept coughing making a very horrible hacking noise.

My next memory was I was lying in a bright room, my mom was talking to the nurse and my mom was saying "is there no other way?" the nurse was saying "no I'm sorry we have to do this" I remember trying to scream for my mom but I was paralysed.

My next memory is sitting on what I thought was my settee at home. It was extremely bright and my whole family was in the room. They were all talking about me like I wasn't there. I remember seeing handrails. I remember thinking "where is the dog, they've got rid of the dog because I am severely disabled" and "they've modified our house because I am disabled" I now think I may have been in theatre having my trachy due to the bright lights?

I have vague memories of my mom telling me that Dawn hadn't had her baby yet.

My next normal memory is seeing a Happy Birthday balloon in my room. Which is the 24th November. I'd been admitted on the 6th November.

I couldn't speak, I can't remember at what point I realised I'd had a tracheotomy but again I never felt panic at being unable to speak.

The turning point was my birthday. Tues 24th November. The day I had my trachy. Also the day my nephew was born. I was still under a lot of drugs but remember my mom saying "It's your birthday" it's odd but out of all the visitors I had I only have memories of my mom and her voice. I remember thinking wooooooooo it's my birthday big deal. I came round with a lot of self pity, feeling sorry for myself. I think this is because I never knew at this point how close id come to dying. I felt anger that someone had done this to me, i didn't have the rationalising skills to remember when i came to the hospital ill and put two and two together, this is what the drugs do to you.

The next couple of days are a bit of a haze due to the medication, I remember people rubbing cream on my feet and hands, and I remember seeing lots of different people come and go but nothing really stays in my memory. The day it all got crystal clear was I think the 27th November, the day I was completely off any meds. I remember my nurse that day saying it's your first day without any medication. This day and all of them leading up to my move to the respiratory ward are a mixture of oddly happy memories and sad times. I enjoyed my safe little daily routine, more so in the later days when I could sit in a chair most of the day instead of cooped up in bed like an invalid. I was doing well until I caught a bug and had extreme sickness and diarrhoea for 24 hours. This really set me back. I was extremely weak, I could hardly lift my hands in the beginning, I remember spending hours trying to push the buttons on the bed control so I could move myself up or down instead of relying on a nurse all the time. The morning would come, I can't say id wake up as I never slept, the nurse would swap and id meet my nurse for the next 12 hours, a new face would bring fear and dread, maybe a little paranoia creeping in, but I can honestly say every nurse I had in those late few days (I only say that as I can't remember any earlier ones) were fantastic, and we had some giggles!

I'd get upset every morning around 8am, this was the time I'd be lying in bed with my family watching TV or giving Hayden his breakfast. But whichever nurse was on would soon snap me out of it. I was being fed through a tube which I hated. Mainly because of the thick unattractive pipe coming out of my nose. I knew the only way to get home and get strong again was to eat, so whenever they offered me food I took it, even the jelly and ice cream which for some reason the doctor thought was a treat. Obviously he mistook me for a 5 year old. The night the nurses took my tube out was great; I finally felt I was getting somewhere. I had to promise to eat as many calories as I could, this wasn't a problem, I never once felt 'ill' after coming round and my huge appetite soon came back!

But the worst part of being in the hospital was the nights. I never slept. I wouldn't allow myself to nap in the day so I'd be tired of a night but it didn't help. The nurse would bring me hot chocolate trying to make me sleepy but I just wasn't. I probably had a maximum of 2 hours a night the whole time I was there. The doctors were concerned when they came every morning but I just could not sleep. The nights would drag; I'd be lying there listening to the night shift nurses talking (quietly) about their Xmas shopping etc and id just lie there. The few times I did drop off I was woken up by the nurse doing their regular observation checks!

I was still full of self pity when the one day a fantastic nurse called Joan sat me down and explained exactly what had happened. And how ill I actually was and how lucky I was to be here. She basically told me to stop moping about, get on with it and get better. I changed from that day on, instead of a battle missing home, feeling lonely etc I decided to fight it. Nurses told me I'd be spending Christmas in hospital, up yours I thought I don't think so. I ate every meal; I didn't need any medication at all. The nurses were so pleased with my progress I was allowed magazines and books. The doctors were amazed, I remember one day 5 doctors being round my bed whilst I was doing a crossword in the chair and they all just stood there laughing, as some hadn't seen me since the week before when I was on a ventilator in a medical induced coma not knowing when I would be brought round. I remember joking with the doctors daily, and getting told off for crossing my legs which is a no-no in hospital!

The hardest part for me was getting weaned off the ventilator. I had to go on a different machine called C-pap, it was so hard to breathe, and never again will I take advantage of something as trivial as breathing. It used to make me so hot and was so noisy. I had to do an hour a day at first. Then once I could do 24 hours I was allowed to have my trachy changed to a mask over the hole rather then all the pipes and machines. I think by day 5 I was ready to go for the 24 hours. I knew I wouldn't sleep at all but I wanted to get that step nearer. And as usual my competitive spirit kicked in and I wanted to amaze the doctors again. I did the 24 hours and my ventilator was replaced with just an oxygen mask over the hole. This was vile. It was noisy and all blowy! They said I was doing well on that so later that day they would change my trachy for a smaller one. I remember worrying that I wouldn't get my voice back or it wouldn't sound like me! In the end the nurse convinced the doctor to remove my trachy completely as I was doing well coughing etc. This felt great; it was such a relief to talk!

Unfortunately then I started to think I'd just stop breathing in my sleep! And when they moved me to the ward a couple of days later it was so scary. I didn't trust the nurses and going from one to one, 24 hour care to being in a room with 8 others and 2 nurses was a massive shock. I spoke to the doctor later that day and thankfully was allowed weekend leave with the hope of being discharged on the Sunday.

I was fully discharged on the 6th Dec, exactly a month to the day id been admitted.

So as I mentioned in the beginning, at this point I should have been on top of the world. Id survived against all the odds. But the next few months were just as horrendous. I was fine if I was kept busy. But any time on my own was spent remembering all the hallucinations. I'd wake up after a nightmare unable to let myself go back to sleep. Evenings were the worse. As soon as 5pm came a dark cloud descended on me, this carried on probably until id had Sonny in March, whether it was the distraction of a newborn or the fact the nights had started drawing out. The muscle wastage I had also impacted greatly on my mental state. I couldn't walk more than a few yards; I couldn't lift the kettle to make a cuppa, the worse one being I couldn't pick up my son.

I'd say it's only now, 10 months on, that I've started to feel like myself. And I credit that to the fact I've spoke about what happened nonstop, at first id 'stop myself, no wanting to get upset or upset anyone else. And also not wanting to take myself back to that 'place'. But I can talk comfortably now without tears or distress. I hope by writing this I can move on, as much as it was the most horrendous thing I've ever, or maybe will ever, experience I don't want to forget any of it. It's a crucial part of my life that will always be there, whenever I talk about Sonny's birth for example. So if I get it all down on paper my mind can forget it, and I can refer back whenever I feel the need.

I've started a group 'Critical Care Survivors' so far I've only met 2 people through it, but that's 2 people I wouldn't have met so any difference no matter how small is relevant. I hope to help people coming out of CCU, as out of 300+ hospitals in the UK only around 80 offer support after their stay, and although not everyone experiences the hallucinations, paranoia, flashbacks and the mental torture, most people do, and if I can reach any of them and let them know it does get better, it won't ever go away but you'll learn to deal with it, then what I went through wont have been for nothing.