Tuesday, 10 July 2012

Hullucinations and ecmo

I thought today I would tell you about some of the hallucinations whilst on Ecmo. I have been thinking a lot about my time on there a year ago now. Things that were real seem unreal and things that weren't seem more real.

To me ECMO was not just a tube in my neck and groin, ventilation was not a tube in my mouth or neck. I was in a huge fish bowl, it was gel like water, the nurses and doctors were mermaids. They would come into my fish bowl and one day they told me I had to come out and when I did I couldn’t rest anymore, I had to wake and breathe. If I would still breathe I could still get a transplant. Suddenly I was dropped from the fish bowl and I had to breathe. This was when I was being taken off the sedation and the ventilator was taken out in real like. I remember trying to breath but feeling like I was drowning, like the water form the fish bowl had seeped into my lungs this gel like stuff and I was suffocating. But I carried on, drowning but trying to breath, panicking and the doctors saying in a serene and echoed voice just breath, breath and the voice's were getting higher and higher, in what sounded like a song.

Another hallucination, I remember lots and lots of blood, I was sat bolt up right and there was blood fighting out my tracki, everyone was panicking, saying if I carried on bleeding I would die soon, there was to much blood everywhere, so I was moved, other patients were just staring at me and I looked at the pleading them to stop it as if they could. This was just a hallucination, but to me I swear there was blood everywhere, but at no time did I bleed out that profusely, although there was blood filling my tracki.

I had so many more hallucinations after transplant it was hard to know if were real or not. What was real and what wasn't. Some times the real seemed more unreal and the hallucinations more plausible, despite there ludicrously. For a long time I didn't know what ECMO was until my family explained it wasn't a fish bowl. The vulnerability when you’re that sick and the weakness of your own mind, understanding the simplest of things if impossible. I remember my family telling me the news of the world had shut down and I couldn't understand why they were telling me this and what significance it had to me, Had they printed something bad about me and about transplant? Stupid I know.

After transplant, I couldn't bare to watch TV for a while, I just wanted to stare into space, but as soon as I did, I was watching the news the whole time, waiting to see if they would talk about a car accident, someone being knocked on he head and never waking. I Was waiting to find out about my Angel, desperate to fit all the pieces together, if what to me was a very confusing and broken story. I understood nothing of what had and was happening to me and I myself was a distant ghost of myself.

Tomorrow, was the day I received the gift of life, where I had to learn to relive, to breathe, to understand, to grow.

It wasn't the easiest of journeys, but now, now I have to say I would never have expected my life to be as amazing as it is.

I've also been thinking about my friends on the transplant list, will they get there calls? Its so hard being friends with other CFers, its the most amazing thing being able to connect with people who understand you but when you are watching them die Its so scary and hard. I have broken my heart over many friends who didn't make it, but I wouldn't stop being friends with such amazing people, there lives and friendships mean so much to me. I just pray that there calls come and we can stop this happening, needless death, because others just don't think about organ donation. My wish for this week, for everyone to just think about it, to make there decision, let your family know, whatever it may be. I hope others get this opportunity I was so lucky to be given.


www.lltgl.org.uk/nhsbt to sign up

25 comments:

  1. I don't understand why you broadcast how fabulous your life is and how much you can do, whilst you have friends listed or not listed for transplant.
    Who can not breathe, walk and are sometimes too ill to talk. Yes you've been lucky be happy with that theres no need to rub fellow cf's noses in it is there?

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    1. What on earth is the matter with you, so much doom and gloom, Kirstie and her fellow cfers have spent virtually the whole of thier lives looking for the light at the end of the tunnel, and when it finally comes, you would have them all slide into the background,?. NO WAY HOSAY, they have got everything to celebrate, and hope to spread to others, cos theres no better feeling to breath normally without having to fight for every breath, so in the future if you have nothing GOOD to say, then say NOTHING at all!!!!!!!!!!

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    2. Surely reading Kirsties blog should give even the most down,most Ill person hope. If you saw the documentary,you'd know that it was "last chance saloon" for her & where some would give up,Kirsties kept hoping & was lucky enough for the call to come. Now she lives life to the full as she knows all too well,just how short it can be!!!! Instead of seeing negative in this blog,you should take all the positive you can & know NEVER to give up,even if it all seems so hopeless.
      I am truly sorry for anyone who is still in the position that Kirstie was,but she cannot be expected to mope around & dwell on the past,as the future can be so bright!!! I hope & pray that you/your friend/family member,gets to experience that & then you'll understand.

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  2. Is it not good to see theres hope? I like reading kirsties blog it makes me feel like I may survive this. Why don't you go troll somewhere else?

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  3. Im sorry but i dont get your point. Im telling people about life post transplant to raise awareness so more ppl sign up to the organ donor register, i have been there thank you! i know what its like in the deepest darkest parts of cf why should i not say im enjoying my life and im extremly greatful for every second to give people with cf hope and show them that if they hold on to that hope, one day they can get there to. My lifs not perfect but hell im goin to enjoy every second, because i deserve it. You cant even come out and say who you are, you obviously a very bitter and twisted person.

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  4. Tim Davies-Moss10 July 2012 at 14:33

    Kirsty gives me strength in her awareness she creates.. and her positive outlook
    Maybe if you took the glass half full philosophy then you would be able to see it too
    Statistics are made up of the same amount of positives as they are negatives... make urself one of them positives Mr Anonymous

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  5. Who ever wrote that really does not grasp the concept of what you are saying and i dont know how not! What you say gives me hope that one day i can be the same as you, able to breathe. Some people have a huge amount of stupidity!

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  6. Wtf! She is hardly rubbing our noses in it she is telling her story of her journey, I am a cfer waiting for a transplant and Find her an inspiration, I think your a very sad person that hasn't got a clue about cf otherwise you would understand you sad sad pathetic person.

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  7. Kirstie dont listen to that 'Anonymous' idiot. I have cystic fibrosis and i totally agree with what you say and do! you deserve to tell people about how much you are enjoying life why the hell shouldnt you! as far as im concernd you are an insparation to people with CF and you give us 'HOPE' and 'ENCOURAGEMENT' so dnt listen to what people tell you, you should be proud of what you have acomplished so dnt stop telling us how you are doing it is nice to know you have come so far!! from Charlotte Moriarty :)

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    1. Hey Kristie,

      Last year I was worked up for a lung transplant but somehow my lung function went up and now im not considering it yet....however at the time i watched your BBC documentary and it made me very emotional watching you like that, as it was something familar to my experience but yours was alot worse! thankyou for sharing your story with all of us CF'ers out there in the world you have touched many peoples lifes and there is always going to be those bitter negative people that you have to ignore and feel sorry for...as they clearly are not happy with themself and the life they are living. I know most of us CF'ers are Fighters and we live our life to the fullest because we know how precious it is! keep strong and keep living your life to the fullest :) xx

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  8. well Kirstie is the person that has helped me through my waiting for a transplant she is my idol knowing what she achieved post transplant and i'm very proud to call her my friend you try pulling yourself up from the position she was in and saying what she is achieving now, it isn't plain sailing it takes a lot of hard work and determination, if you dont like her good news why do you read her blog/profile/group i'm sure there are a hell of a lot of people that want her to do well than just you who wants her no to do credit where it's due she's worked hard to get where she is now

    jealousy is a cruel illness

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  9. Keep posting!! That first commenter, is very bitter, you have been through what everyone else going through transplant is going to go through, you reached the other side, and showing how good life can be, is motivation to fight for it. Perhaps the first commenter should not read if they do not like hearing it.

    Ah ICU hallucinations are very odd indeed, though the water thing seems to be a big theme. I thought I was in a big scuba tank and the reason why I couldnt sit myself up anymore was because I had a breathing tank on my back.

    Though, I did also believe at one point, that there was a horrible gas, that could kill people if it were released, but the nurses and my family didnt want it to kill people, so instead they were pumping it in to me via the vent and trach to get rid of it. Its very odd what your mind comes up with and how real it can seem. Luckily the more time that passes from the time of being so ill, the more the memories fade. Most of the ones I recall now (9 years on) are only because I wrote them down.

    Keep up the good work! Its a pleasure to read your blog.

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  10. wow! i don't even know Kirstie, but to actually read someone respond that way is just sad. you may feel that way, but to react to that bitterness and voice it on someone else's personal blog, who has every right to post what she wants, is not right. you should be ashamed!

    Kirstie, i think you are one amazing young lady and only hope that i'll be able to come thru something such as a transplant, living to tell about it! and living well! you rock on, Kirstie :)

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  11. As someone who doesn't have CF, reading Kirstie's blogs make me understand what a horrible illness it is and actually made me sign up to the organ donor list. I have also got other people to read her blog and watch her documentary, and they too have now joined the list. Her strength inspires me to push past what to me is a bad day or a shitty cold and actually be positive. Whilst its not on anyway the same scale, the strength that she shows makes me stop feeling sorry for myself and make the most of life. So for that Kirstie I thank you!!!!
    I may not have CF, and I may not understand from that point of view but her blog makes me understand a little bit about what it's like. And if she can inspire me, I don't understand why she can't inspire others with the same illness. She is real and speaks truthfully, that is something to be respected not criticised. If you don't like reading it, then don't read it. simple. Carry on doing what you're doing Kirstie! xox

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  12. Hi Kirstie
    You're documentary just aired tonight in Australia and I watched it with tears in my eyes. Your strength is amazing and I believe your miracle came do that you can be an advocate for organ donation. My cousin is also waiting on a lung transplant and she is on oxygen 24/7 and whilst we are very close watching your story really helped me relate to her and the struggle she's gone through. Thank you for sharing your story and shining your light throughout the world <3

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  13. http://epetitions.direct.gov.uk/petitions/35788please can you help save our local childrens heart surgery and ecmo service at glenfield hospital by signing our epetitionclick link fill in deets and confirm email. Our unit saves many young lives .

    kirstie i have been following your journey u are an inspiration to all cf sufferers and families keep telling your story . It also gives donors families hope in their sorrow that their loved one has given life to someone that appreciates its true beauty x im a childrens nurse and i know cf kids need to see there is always hope without it you have nothing. xxx

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  14. I don't want to upset the apple cart but I can't 'totally' disagree with the first response. Perhaps it was put crudely and so was interpreted as if this person were 'trolling' but I think this person is just a bit frustrated. This person clearly isn't a 'troll', I think that's a bit harsh. A troll would be being abusive and stalking you online. They merely have an opinion that differs from your own.
    I recognise what you're doing and realise your work is important. You have been an inspiration to many and this is great. But its also important to remember to keep yourself grounded and have a little consideration for those going through what you did, not so long ago. Every one is pleased to see how well your doing, but some find it difficult to see the constant torrent of messages saying just how wonderful things are when they are on the edge. I know your fight is far from over and you still have struggles but I just think its a sensitive area and potentially could sometimes be put in a more tactful way? Perhaps even asking how your fellow 'CF'ers/transplantee/those on the waiting list' how they were now and again would be some step towards some folks seeing it a little differently?!
    I know this message will be qui-boshed and 99.9% will disagree with me which is their right of course. But be mindful of the 0.01% remaining is all I say. I know I am not alone is finding it a little upsetting sometimes to be waiting for the call and seeing everything I (and a lot of my friends) will most likely never have (we all know the statistics). I am also aware you are promoting organ donation which I am very grateful for. Sometimes your updates come across as a self-obsessed though (thought i'm sure its unintentional) and that may be what rubs people up the wrong way.

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    1. Your entitled to you opinion. I do ask how my friends are doing alot, But I don't openly post how are all my transplant friends today. Im always here to talk to my friends waiting and try to make that quite apparent. This is tho my blog, which I tend to blog about my life, I can't really speak on other peoples behalfs on here. But If people don't want to know about my life then they simply, they don't have to read, Its like if you don't like a book you put it down and stop reading it. Unfortunatly you can't make everyone happy and im not going to try to, I do what I can to help my friends, family and those generally around me. Anyone who doesn't know this, doesnt really know me. I have to say though I never go onto peoples blogs, email them, or post to try to bring them down a peg or two, If I don't like what someones doing then I just stay clear . simple

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    2. Well said Kirstie, funny how people may see you but i was with you yesterday when you visited a CFer to see how he was but then some people just dont want to know, sad really.
      Love you hun xxx

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  15. I think if you read back over what I wrote it was in no way vindictive or nasty. It was merely a message to point out why some people find it difficult to cope when they are also waiting. You said yourself you felt a pang when other people had their transplants, that's all I am feeling. It doesn't make me 'bitter' as you suggest.
    Recieving criticism and reflecting upon is part of adult life. You can't that everyone will things in the same light, any more than I can.
    As far as one of the posts I read re: my previous message, I just want to clarify that actually I do have the experience to know what cf is like, I have 17% lung function myself and am end stage.

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    1. Sorry,I realise that read as I hope you go thru it,where I actually meant that I hope you get to experience the other side,the bright side,where all the hope & faith you have pays off. I sincerely pray that you get that call as Kirstie did.

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  16. Hi Kirstie, it's Joey. I want to respond to this. Throughout the time I have known Kirstie, she has been the most selfless person I have come across. Whilst she was awaiting her transplant, the thought and consideration she showed to her friends was amazing to see. She kept positive, or at least attempted to be positive, and offered support and help to everyone, not just those who were suffering from CF. During her blogs, she spoke of the worst of times. This cannot be construed as rubbing anyone's faces in anything, but merely being honest and truthful, which, to this day she has kept up. Would it not be hypocritical and unjust of she was to just be honest about the shitness of CF? I personally feel, that by continuing to spread the news of what she is going through, even today, even if it is positive, surely it gives those who are waiting, the hope and knowledge that their lives can be better? That CF is not always winning? Even though not everyone is lucky enough to receive a transplant, surely the blog encourages ALL to remain positive and hopeful? I don't see it as rubbing anything in but raising awareness of what organ donation can do to lives in order to attempt people to sign up? Surely that's a good thing? Why should she stop speaking the truth? If she stopped, then all the people who have supported her, followed her story and look to her for inspiration wouldn't know the good she's done and continues to do, not would those waiting have an idea of what could be to come. Perhaps those who have commented negatively should think about that side too and be more tactful in criticising an inspirational woman whose only thought here was to educate and inform. Nothing selfish about that. I know of 5 people who have read her blog and signed up since the positive blogs. Surely you're selfish in wanting her to stop the great work she is doing in promoting. Just a thought.

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  17. No one asked Kirstie to stop writing!? All I am saying is its important to be mindful of the emotions of people awaiting Tx.
    You are all so quick to jump and and say how perfect Kirstie is! No one is saying she isn't doing wonderful work, so there is really no need to be so defensive. You cant expect to be in the public eye and be idolised by 100% of people. Everyone perceives things differently.
    In the sensitive subject area of Tx about which Kirstie talks, there will obviously be a lot of people awaiting transplant who will be following Kirstie. Anyone awaiting organ donation knows how much it can change life for the better - therefore kinda don't need it rammed down our throats when most of us wont get one. It's important to be thoughtful of those sitting at home with little or no hope.
    There are many others who do this good work and manage to leave out the self promotion. It's not impossible

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  18. Well I'm not gonna get involved in the debate above. I'm not a CF sufferer but I am a PH sufferer (Pulmonary Hypertension)and am currently waiting for a heart and lung transplant.

    I'm pleased I read this post coz I've asked my transplant co-ordinators about hallucinations post transplant and they told me it doesn't happen often but everyone Ive talked to who's had a transplant has had hallucination. So I find this post very useful.

    :o) Stacie xoxo

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