Saturday, 13 October 2012

ITU and all the nitty gritty

I asked a question, what sort of blog would you like to see, here's one of the replies I hope this blog helps.
@Princess_Ellie2: @KirstieTancock bit general but how to cope after itu and being sedated for days and the after effects x

Thinking about my time in itu is very hard, it a horrible place to be, people have asked me how you cope with it especially a prolonged stay, there aren't any specific coping mechanisms but when I think about how I coped, well to be honest I'm not even sure sometimes. Itu felt like a big consuming black whole, I felt like even though I had had my transplant my life had ended and all I and left was this all consuming place, now I know many of you are sitting there and thinking that's not encouraging, or inspiring, it's terrifying but I guess when u think how I'm doing now, you realise that there is a light at the end of the tunnel.

Firstly some of the things I didn't expect, Ecmo. I didn't know what Ecmo was, I didn't know how it would feel, I didn't know what dying would be like? Ecmo, is a machine that takes your blood out re-oxygenates it, it also takes the carbon dioxide out and your blood is pumped back in. Its a heart and lung machine. To me, it was terrifying, but I want to look at why it was so terrifying, I was dying, on the verge of life and death, my lungs were bleeding constantly, there was so much blood i was suffocating on it thro my ventilator and my body swelled up to three times it's actual size, I was very sick, but at the same time, I don't imagine dying any way was going to be any less terrifying. This machine as awful as it sound was a miracle machine, it keep me alive when all other options were exhausted and I made a full recovery after it. When I was on Ecmo, I was in and out of consciousness, people have asked me if your always asleep on it, the answer is no, I know many people who were able to be fully awake, although I know that's not a pleasant experience either. I felt more piece full when I was asleep.

Tracheostomy I didn't ever think I'd have a tracki, it's a tube through you neck to your wind pipe that they can ventilate you through, it's easier to do suction through this then a Ventilator through your mouth. To do this they take the ventilator off, change the stent in the tracki and put a tube into the tracki with suction, it's a horrible sensation, I refused suction one whole day ending in a bronch which set me back, a tracki isn't pleasant but it saves going through so much more if you really need one. I couldn't talk with my tracki until I had a voicenator on it. My vocal cord were really weak and also my new lungs were still weak so I couldn't talk very well to begin with. When my tracki was taken out, I was left with a whole, yep, all the way through, it has to heal from the inside out, you have it covered with a dressing and clean it out when changing the dressing, I thought it was weird and quite cool. If your dressings not on you can't speak as the air misses you vocal cords.

Depression, I wasn't prepared to feel depressed. To feel like I couldn't do it anymore, like I had now forgotten how to go on, to live. I was so used to dying, to find the will and drive to keep going was hard. I felt despair, like I wasn't suppose to survive. Like we had gone against the will of god. I know it sounds extreme but there's no logic in itu, when you had been what I had been through, it felt like god had abandoned me. I'm not very religious, in terms of I don't follow a church, but I believe in god, I believe In Heaven, maybe not hell though. I also felt like someone had died for me, we all know that's not true my donor was unfortunately already dead, they were simply giving life after their death, in itu that isn't clear anymore. It all lead to a deep depression, I didn't want to watch tv, I didn't want to do rehab, I wasn't even sure I really wanted my transplant that I had now had. These things are all normal, there not there forever, you will see the light on the other side, life does go on after itu.

Hallucinations, I was never warned out about these, not properly. They were confusing and felt more real than the real, I have done a small blog on these on there own. But to recap, I didn't see the fluffy bunny running around the room like some, I saw the devil, god, mermaids in gel fish bowels telling me it was time to breathe as I was dropped form the sky, my family fighting and arguing. None of these were pleasant, they were distressing and scary.

The thinks that helped me, we'll they say its important to have a strong support network around you and I can't emphasise how important that is, because on those day you don't want to get up and do rehab you need your family to tell you, you have to now. When you need a human touch, you need someone's hand, not just anyone, but someone you know loves you, someone you can trust, because for me everyone around me seemed like an enemy. When you feel like you can't do it anymore, you need them to tell you you can, but also sometimes you need someone to tell you to man up and actually you don't have a choice, you were there, you had that choice now it's gone. Now it's time to live, to do your donor justice. Sometimes just sometimes, you need that Stern talking to. That's why family are so important. They fetch, carry, encourage, tell you off, rub your aching body.

you've got to keep your eye on the prize, so to speak, why are you doing this? Why did you want a transplant? maybe you didn't but have been in itu for a different reason? What will you do when you are well? what will you do with the rest of your life? And again it's hard to remember when your in itu, that's why you need your support system, your cheering squad.

Speak up, now you may not literally be able to speak, I couldn't for a while, but if something doesn't feel right you have to let them know someway, most of the time you think it's all normal and that your bugging people but things like hallucinations arn't right and people can help. You don't feel like you, You feel extremely anxious, there all things that can be helped and suffering inside your self is painful.

Recovery after itu, well the recover after itu mentally can be a long one, I talked to a phycologist on itu and on the ward but once I went home, I felt I was ok. I was suddenly on the high that was life, but then these memory's keep coming in, for me, talk, talk, talk, don't stop talking it through with people, discuss events with your family, go over how things happened, there's all these blank spaces to fill and if you don't fill them with how things actually happened you tend to rely on horrible hallucinations and incorrect memory's things that are probably a lot worse than the real event. Every now and then I still recall things 15month later and I have to ask people, did that actually happen?

So my advice is based on my own experiences. I had a very tough time in itu, is it like that for everyone? No. There are those people who are out of itu in a couple of days, it's still hard but much smoother. Not everyone has hallucinations, depression, tracheostomies. If your reading this with the thought that this is what you will go through, then try not to worry, your experience may be completely different and if you have gone through something similar and not sure how to go on from there, well I guess this shows that you can get through it, you can live a normal life. There is life after itu.


- Posted using BlogPress from my iPad

18 comments:

  1. Great blog Kirsty,Insightful, realistic and honest.

    Lisa

    ReplyDelete
  2. Thank you for doing this so much. A great indepth description which has helped me deal with my times in itu, showing its normal and ways to deal with it after. Please sleep tonight knowing you have helped someone so much by sharing your story. I'll be forever thankful x

    ReplyDelete
    Replies
    1. This is all I hope to do thank u x

      Delete
  3. I had a much smoother stay in ICU but suffered from lots of hallucinations both in ICU & then on the ward, so I know how scary they can be. In terms of not knowing what is real & what isn't (& also missing things/forgetting things due to being so ill), my mum kept a diary which I found v helpful to be able to look back at to fill in the gaps.

    Take care,
    Molly

    ReplyDelete
    Replies
    1. Itu is a scary place smooth or not. I'm glad your experience was relatively tho. A diary is a great idea, I wish I had that x

      Delete
  4. As usual Kirstie,absolutely brilliant,well done! I can add that I have gone through those same hallucinations,fears and being distressed and scared without entering ITU.I have to wear a nippy and I do not get on with it sometimes and I can wake up gagging,sweating and fealing very alone.What you say about your support is so spot on, I do not have that but I do have the support of an internet site of fellow sufferers and it is very important to me as if I am having a rough time I just post on the site and sure enough up comes empathy,sympathy,support and advice born of their own experiences and that pulls me through. I would like to add that reading your posts and blogs have been as much a support as theirs have and I have been able to pass on your experiences to other people who have also benefited, so thanks for me and thanks for them,I hope all your job plans and your dreams for the future come to fruition and I look forward to reading about your experiences and successes, God Bless you,keep smiling, I will not sign off in my usual way as I have not asked you if I can name the site so I will just sign K. xxx

    ReplyDelete
    Replies
    1. Ilium glad my blog has been able to help u, I cn certainly relate with the anxiety of a nippy. Xx

      Delete
  5. Plz feel free to comment, it's nice to hear others experiences x

    ReplyDelete
  6. I have been vented a few times in the past after a bad asthma attacks and the memories of me waking for a few minutes (apparently they stop sedition for a while to work out what your body can do) the thoughts I had was I can breath with little effort after the struggle of the asthma attack, was able to relax. I also remember hearing voices. I also remember waking up during something not sure what they were doing and I felt disconnected from my body my mind was normal but my body didn't feel like mine.
    The worst bit found with the whole ITU experience is having someone watching over you the whole time when been awake in ITU I wake up every time someone comes near me and get anxious when they are doing things to me and not telling me (ie taking abg)

    ReplyDelete
  7. Such an interesting read. I had my tx 7 yrs ago and was in itu for a week. My experience was very different so reading how you got on was very insightful. I didn't have hallucinations (and now feel very lucky indeed!) but I became very afraid of dying. Which was odd after being so ill for so long and not being afraid! I didn't want to go to sleep at night incase I didn't wake up. I was already on medication for depression so I think that kept the worst at bay but I had up and down days thanks to the steroids and the adjustment to breathing without a machine!

    It's a major thing to go through that many people will never experience. And at a relatively young age. It's all part of what makes us stronger. I'm so glad you made it thru your dark days and can share your story. This highlights how important emotional support is post-tx. It's important that people awaiting a transplant understand that there's still a way to go once the op is done, physically and emotionally. By reading a blog like yours anybody who has a similar experience can know that they're not alone, and that they can get thru it. Like you did.x

    ReplyDelete
  8. I really like this blog Kirstie and love reading these type ones as they provide a really good insight in to what could happen and I feel more prepared for when mine actually happens. And if it turns out to be less traumatic it's a bonus :o) xoxo

    ReplyDelete
  9. I certainly hope so! I always wonder whether it a good thing to tell everything. Do you potential scare people out of doing something that is going to be life changing and amazing or are you helping and preparing? But I got asked so I guess it helps. Xx

    ReplyDelete
  10. Kirstie I'm waiting for a transplant and I would rather know what to expect than having everything glossed over. It is a great help to know some reality of what may happen. The thing to hold on to is that you got through it all and now life is better. xxx

    ReplyDelete
  11. I used to hate suction too. I had had surgery on my abdo and lungs so coughing hurt and suctioning is never pleasant. But as you say, without it, you suffer set backs. Depending upon your level of being awake and ability to move your arms, some physio can teach you to suction yourself, which can give you a feeling of a little more control. My first admission was 3 months and I was unable to lift my arm high enough, but subsequent admissions, have been much calmer, which makes things easier.

    But yeh, make sure the staff know if something is up, even if you can talk. Bang the rails on the bed till they listen. Dont suffer alone.

    ReplyDelete
  12. You really know your stuff... Keep up the good work!

    ReplyDelete
  13. Wot an inspiration you are it's also nice to see a young couple so committed to each other as u and stu are I'm a tough trucker lol but your doc had me in tears at times the way u battled but still remained happy good luck to u both

    ReplyDelete
  14. This is my first time i visit here. I found so many entertaining stuff in your blog

    ReplyDelete