Selfish me and PTSD.

[Some-bits-not-original]

Hi folks,

My latest experiences of ICU being in 2011 for a liver and kidney transplant had a massive affect on me. I've always prided myself even from a young age of the ability rightly or wrongly of becoming very single minded (some may say selfish) about getting out of hospital, I won't allow anything get in my way of getting better.

But this time it was so hard. Long story very short, my liver and only kidney (both transplants from 1992) were failing fast and I had to once again have to live in hospital for months waiting for a new 'set' from one donor.

While in there I had some very near death experiences. In fact, once truly thinking this is it.... the end...this was different than the other times I've slipped into comas or passed out. Why, because of no pain, just felt my body shutting down, finding I can't breath.... just tiny shallow breaths . My eye sight fading, I just remember the room being full of staff some disconnecting my drains from my kidney and other lines I had in me, others being put in. All the time they kept telling me to fight and not close my eyes (I remember a nurse or doctor saying that very loudly close to my face and smell of her perfume) also the crash team being around and one of them clearly giving orders and reading a list out loud.

I glanced to my right at the monitors (after a life of being in hospitals, reading them is easy) and it was bad, v-bad. Then that voice I have in my head told me... your going mate....this is it... no more................ let it go.

This is all so clear, so vivid..... hard to type this....but i will go on, but not about that night (I can't yet) but how it left my mental state after I came out of hospital in late Dec 2011.

All seemed normal, medically everything was going well new organs working fine, and the regular bi-weekly visits back to the transplant unit for blood tests etc. It wasn't till Mar of 2012 that I started to be 'on edge' found I was 'jumpy' plus would burst into tears at the slightest thing and the nightmares, oh the nightmares.

In Apr while on route by train to hospital from my flat in Bucks it means I have to change trains, while on the platform a man bumped into me (nothing unusual, after all it was rush hour) but before I knew what was what, I had shouted loudly at him and run after him and grabbed his arm! He looked a just little more shocked than I was at this, after letting his arm go (how could I be so angry and believe me ready to hit him) I mumbled an apology turned round and walked away leaving him calling me all the names under the sun... calling me a thug etc, I felt terrible, shocked and was shaking like a leaf.

That was the day I started smoking again and had a few beers and yes.. missed my hospital appointment.

I'll end this post for the moment at this point as it's long and maybe not all that clear, but it helps. Maybe not make all of them epics, thanks for reading this far and i'll be back because it does me good, similar to what I've been doing while having psychotherapy.

PS my friends call me Buddy, bye now.

[ICUsteps-Peter Partner ICUsteps]

Buddy, Thank you for sharing your account. I know how difficult it can be to face things by writing them out in black and white but that also it can be a help to 'get it out' and have put things into place, particularly for those piecing together post sedation memories. I hope after finishing, you feel a benefit from posting - it can take courage to share these deeply personal thoughts and experiences but it does provide reassurance to others and I hope helps you as well.

It never ceases to amaze me that despite very different reasons for our admission to ICU and different critical illnesses that there are such common themes that we share as ex-patients. Our stories are all unique but there are common threads and if you talk to another ICU patient it really won't be long until you find there's something you've both experienced. The isolation that we have from others like us and the additional stress we can face by believing it's not normal and it must just be us going through these things makes coping that much harder. That's where sharing our experiences and contacting others through the community can make a real difference. Thanks again for sharing.

[Some-bits-not-original in reply to ICUsteps-Peter]

Thanks Peter,

Yes it's very difficult, also it's made complicated because of been in hospital many times over the years and they tend to blur into one. I guess you can only take so much before it all comes flooding out, posting does help, unconformable, upsetting but (I can't stress this enough) I helps me.

I have come across other people who have shown signs of PTSD, but never thought it would happen to me. Guess because of my single mindedness I thought 'been here done this' no problem. But this 'thing' it creeps up on you before you know were you are 'BAAM!' you're not the same person any more. This site helps me no end as I'm relieved to find others and not be so isolated and feeling .....well a bit lost.

[Kulta]

Hi Buddy, I was fortunate to escape transplant when my liver and kidneys failed in August 2011 following emergency childbirth. I spent seven weeks in KCH having been transplanted from Reading, where were you? I too suffered the PTSD in a very similar timescale following discharge, I lost a lot of hair and my body was and still is an odd shape - the extensive scarring doesn't bother me. In fact, where the central lines on my neck periodically swapping sides left me with marks someone thought were love bites! Its interesting to hear about your encounter on the platform, I want to appreciate that some people can be having a bad day for all sorts of reasons. Anger was certainly one of the emotions I strongly felt in my initial recovery. Sertraline - an anti-d specifically for PTSD has prevented me from holding on to the intrusive thoughts but I think about hospital every day although cannot recall the horrid thoughts too readily nor can I hold on to them. I go for an interview to volunteer in the first ICU I was in on Monday 3/12 and can't wait to help others now I can no longer give blood having received so much from donors. Time, a long time and way off yet pus medication and being able to exercise finally has been my greatest healer along with regular ICU follow up clinics and support groups talking to those who have experienced the trauma of it all. Keep 'talking' (writing) as we will listen long after many think you should have gotten over it by now xx

[Some-bits-not-original in reply to Kulta]

Hi Kulta,

I'll give you a better reply soon, but at the moment I'm off to watch my football team soon, and i'm starting to get ready (today is Sat around 12.00). It's funny going to the ground on a football game day I'm like a little kid again and as of yet, not had any signs of PTSD on football days, thank goodness. Lucky me! it's like have at least one day off every now and then.

We must have been at Kings at the same time roughly , been going their for over....er.. 21 years now. How things have changed, still i'll save that for my reply later. Bye for now.

PS good luck for Monday.

[Kulta]

Hey again, I was discharged from KCH finally from Todd Ward (after LITU) on 21st Sept 2011. I am so lucky that the first hospital I was in are pioneers in follow up care for ICU patients. KCH don't have such a thing but understandably being a Trama centre, it would just be too challenging. I did go back and visit both wards on my last appointment there (a month or two after discharge) before my care was transferred to local hospital though and saw the patients including my 'old bed' and couldn't believe how poorly people looked and even said they looked at deaths door and I'm glad I didn't but my partner soon told me "you were" He videoed and photographed my stay in LITU and I am glad he did. I can see how poorly I was and make sense of my surroundings - how many times I was disorientated after extended sedation and 11 theatre trips and like you, had a 'I've had enough' moment and many hallucinations. I cannot remember my bed numbers but recall seeing someone 'crashing' opposite me. Thankfully he was 'brought back' unlike those in the big yellow trolleys that frequently passed. I feel for you, you have had a horrendous time of it, too many times but what doesn't kill us eh? I'm so pleased to read your story in my own selfish way. Enjoy the football, I'm in the hair salon :0)

[Some-bits-not-original in reply to Kulta]

First thanks for all your kind words.

Well Kulta fantastic news you made it off Todd Ward without having a transplant! only a few people can say that, I don't wish that to sound flippant, because you sound if you had a very rough time of it............all that surgery, plus on top of the time at Reading ICU and all that entailed. No wonder you had a 'I've had enough' moment.

I'm so glad you had your partner with you, most family and loved ones at one point say '' I feel so useless there's nothing I can do'' but all of us know that comfort we feel knowing someone is next to us, maybe just holding your hand or talking to you, maybe just being there, I'm sure folks on this site know the things I mean.

Yes the Todd ward and some of the other wards that surround the LITU at Kings do indeed take some getting used too, that big yellow trolley can be a common site, one minute the room opposite is V-busy then.......curtains, trolley, then the deep cleaners then for a short while a empty room....so sad. But we came out didn't we? nothing on earth can beat that feeling I think.

Oh yes we won 2-0, been a nice day.

[Offcut]

I agree to write and talk about your time and experiences, are somehing I have found has been a great help to me. It has been over 4 years since I was in but new things come into my head still.