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.
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