Positive Recovery ;Keep up the good work !

Hello ,

Since there seems to be a recent shortage of posts recently I thought I would share my story with you all as I have been a member of this community for a few months but haven't posted anything about myself yet.

I spent some time in ICU exactly 2 years ago after contracting the rare PVL-MSSA bacteria in my lungs which caused double Necrotising Pneumonia ,a Pneumothorax and Severe Sepsis ! On top of it all I also had the A Flu as well. I was 36, very fit and had rarely been sick before and was proud to have had a period of more than 11 years without any single sick day at work ! Besides I'd never even been to hospital. All of this came very suddenly and as a bit of a'' perfect storm'' . I thought I had a bad cold but it turned very bad very quickly and I ended up in Ressus. and then ICU within a few hours of arriving in hospital..

After 2 days on Non-Invasive ventilation ( NIV) which was exhausting I had to be sedated and put on a ventilator for 7 days . I have many memories of my time in ICU and even with the ventilator in which was pretty horrible . I had many bad dreams/daydreams/hallucinations and was very paranoid most of the time I was there . I apparently was hard to sedate and pulled my wires,lines etc off a lot ..I actually remember doing so too ! However I also remember the kindness of many of the nurses and doctors who looked after me and their encouragements when I was so ill and could do absolutely nothing for myself ..

I spent 2 weeks like this then was transferred to a Respiratory ward for another 2 weeks where I improved very well before going home . I stayed off work for 7 months but my recovery was very steady and so rewarding ! In that time I went to peeling a banana in 10mns and having to learn to walk again and struggled to regain my voice to being able to go on hikes and back to all the gym classes i used to attend before. It wasn't easy ,even scary at first and I had to take many steps of faith and work hard as much as I could but it paid off ! I often remembered the words of a lovely nurse who'd told me to keep going & only ever look back to see how far I'd come.. Indeed ..!

These days my life is pretty normal I would say ; I still have ( and might always have) some obstructions in my airways at times and still cough and the only thing I am still not able to do is to go back to a Choir I had joined a few months before I got sick as my singing voice isn't the most constant unfortunately but it's a very small price to pay and I am grateful of everything I got back everyday and feel very blessed indeed.Overall this whole experience,especially the recovery part has been very positive for me and I hope others going through it too can make the most of theirs as well.. It's a long road and you need to keep looking after yourself well to make the most of it..

Last year I got in contact with Peter Gibbs of ICU Steps to enquire if there was a local ICU Steps group here near Belfast but found out there wasn't but I was put in touch with a ex-ICU nurse who was interested in starting one locally and we are currently working on it ! We've now met up a few times and met other survivors who hopefully will keep attending and help more others ! : o )

Wishing you all the best. X

5 Replies

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  • Hi Pandora8

    Thanks for sharing your inspiring story, My experience was very similar to your own except my lungs suffered a fair amount of damage when I spent 3 months in ICU 4 years ago, unfortunately I couldn't return to my old life but have made the most of my second chance of life when I starting a local support group back in 2012 which later became part of ICUsteps, with inspiration from Peter Gibb I'm now a trustee of ICUsteps which has lead to me speaking of my traumatic experience at conferences something I would have never done before.

    I wish you the best of luck in getting a local support group started, one has recently started in Dublin due to the great efforts of another ex-ICU patient.

    Best wishes for the future.

  • Hi Pandora, I can relate to the account of your time in ICU very well. It was around this time seven years ago that I went through similar, though most of it's still clear (unfortunately) in my mind. I rarely think of it these days but for ages afterwards it was a truly haunting experience.

    Like you, the ward I was on tried the NIV first - all I wanted was to pull the mask off as it was difficult to breathe due to a severe asthma attack. Only a couple of hours later I was put in an induced coma and taken to the ICU. I could hear/see such awful things (hallucinations), was paranoid for most of the time and felt like a trapped and frightened animal. I also developed pneumonia followed by septicemia, had to be resuscitated twice and was finally given a tracheostomy. Two weeks in the ICU and three weeks on the respiratory ward.

    It took a couple of years of hard work and help to overcome much of the fear and when I read your experience, and that of others in the same situation, I can relate fully.

    I've been encouraged by a friend (we met on the ward and she'd gone through much the same) when she told me that she had to be re-admitted to the ICU some time later. Told me that the nurses seemed more aware of the patients perceptive and reassured her often that she was quite safe.

    Warm regards xx

  • Thank you for telling us your story. I love the bit about peeling a banana in 10 mins! To people who haven't been very ill, it might sound like a joke, but I remember how desperately weak I was, and how much energy it took to fold a small piece of paper!

    I'm so glad you have recovered well.

  • Thank you so much for your story, it helps to know I am actually normal what I have been going through, I spent 3 1/2 months in itu I am 39, I came out last march, I was ventalated and had a tracki and slowly weaned off the ventalater, I was told I may never breath again on my own. It started with a leg infection, then ulcers, sepsis, which led to organ failure. I also suffer from Muscula Dystrophy, which has made things a bit tricky, when my Dr said I wouldn't come home I laughed, they didn't know me very well. lol.

    But finally on March 19 last 2014 I came home, It has been a long journey and I have a long way to go, I am wheelchair bound but I do a still try and take a few steps, but I am home.

    I remember such terrible dreams, and so clear in my head to this day, I still get flashbacks when certain things set it off but I'm learning to deal with them. I remember scratching one of my lovely nurses because I thought she was going to kill me, this I would never of done, apparently its all normal.

    Since comeing home to my lovely family, I take one day at a time. My hair was falling out, they dont tell you that happens, I have short term memory loss, some days better than outhers. And I cant seem to concentrate for long, But I am home, I am alive and determind to make the most of life. This year my husband and I are renewing our wedding vowls, its our 20 wedding anniversary. I have so much to live for and so grateful to all the amazing Drs, nurses, physios, dietitian, Hso, everyone who got me through.

    I appologise for babbling on I didnt intend to. But I wish everyone all the best, and thank you for takeing time to read . x

  • Thanks for sharing your story. It reminded me of how I look back on my time recovering from a month of an induced coma and then another month in their high dependency unit. I was 25 at the time when I was diagnosed with vasculitis. I had suffered from 2 pneumothorax 1 hypertension pneumothorax both lungs collapsing alongside all my other rgans. And severe sepsis too.

    It will be 3 years on 24th February and each year I mark it in my own way of contemplation and giving some money to charity. I feel blessed too. Just like you from holding a cup and learning to walk I now can do all the things I did before. Though I get exhausted a lot more easily then before. Again, like u say. Small price for being allowed a 2nd chance in life.

    'What didn't kill me, has made me stronger'

    Life is so much more beautiful now. Everything about it. And I too am so grateful for all the hardwork of the nurses who cared for me. The NHS is amazing!!!! I never went to hospital GP before this so now its like a 2ns home where I have to be regularly monitored.

    I'm glad you recovered well and everyone else here too. We all have come far and the better part is we appreciate life more. Which is always nice. Onwards and upwards ...!

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