Dealing with ICU

[Anna1001]

Hi everyone, I'm Anna and I'm 20 years old, I was admitted to ICU over a year ago now (Jan 2016) due to septic shock caused by an rare retro-pharyngeal abscess infection between my spinal cord and my esophagus. I don't remember any of ICU however my mum kept a diary to help me piece together what happened. I thought I just had a throat infection and the next minute I was having emergency surgery, the doctors still don't know why it all happened so I guess I'm a medical mystery! I live with two constant reminders of this experience in the form of two large scars on my neck. Although they have become less red and prominent over time people still look and ask about them. If anyone has any advice or good tips as to how to care for them or reduce their visibility that would be great! If I'm honest I've only just really started to mentally deal with what happened within the past few months, at the time doctors would tell me that 'I didn't understand how ill I was' but I think it was more that I was mentally pushing it aside so I didn't have to think about the severity of it. I have noticed that my memory and thought processes have become a lot more strained since ICU, especially prominent since I'm now at university studying history. I also still tend to get very emotional around the day of my operation every month, almost like my body remembers the ordeal and then my brain has to catch up as to why I'm suddenly so emotional, I just wondered whether anyone else has experienced this or received any help or advice for their altered cognitive function. It's very comforting that there is a group like this as I often find that its very hard for people (especially of my age) to relate to an experience such as this and find it hard to know what to say.

[LesAnne]

Hi Anna I have a scar on my neck from surgery and I use Bio Oil on it and it has helped a lot. I am a lot older than you but understand what you say about your cognitive functions. I know I'm definitely not as on the ball as I was pre ICU in February 2016. I'm sorry but for that I don't have an answer. Healing thoughts from LesAnne

[Anna1001 in reply to LesAnne]

Thanks LesAnne, yeah I've been using bio oil too, it's definitely made them less red but they are still quite bumpy as they had to leave the incisions open to allow drainage so I think the next step is probably plastics. Yeah it's interesting because I mentioned it at my outpatients appointment and they didn't think it was anything significant so I just assumed I was overthinking it in my head but since finding out that loads of other people suffer from it too I can definitely identify a change in my memory and thought processes.

Anna xx

[Posie1]

Hi I wanted to say I understand how u feel with the mental changes u r having I was in ICU 6 months ago I had a liver hemorrhage out of the blue I was on life support my family was told I might not make it but after all said and done I'm still here!! But I'm have many issues with my memory concentration and have critical illness polymyopathy/ poly neuropathy my legs don't seem to work with my brain and also my arms I have a tracheostomy scar which is still very purple but hoping as u say it will fade in time I hope u r feeling much better sometimes it's just nice to talk with someone who understands how this emotional roller coaster feels . Tracey

[Anna1001 in reply to Posie1]

Yeah exactly it's just such a crazy thing to get your head round and come to terms with, especially when it occurs out of the blue! Especially when it affects your family so much because when they get emotional about it and talk about it (which they also need to be able to do) the severity of it all comes rushing back and makes you realise how lucky you are. At the end of the day you just have to focus on the fact that you got through it! Yeah my scars were very red/purple up until at least 8 months after my op, bio oil helped a lot though, I tried correction make up but it was very difficult to find the right colour to match skin tone! Yeah thank you, it's nice to know that other people are in the same boat.

Anna xx

[Yiva in reply to Posie1]

Hi I hope you don't mind me jumping in but one part of your answer interests me. I'm 5 months into recovery after 5 weeks ICU, 3 weeks induced, paralysed coma. You say your legs don't seem to work with your brain. I was walking with a frame b4 I left ICU, I also climbed the stairs etc as I wanted out of there very badly. I walk now un aided arround my home, with a stick for a very short transfer fto. Car to doctors and still use my wheeled walker the rest of the time. I found out this week that during coma your brain looses connection with your muscles. Some muscles don't work as your brain no longer recognises that they are there ! So I've been advised to watch the muscle work, twitch etc every day, lots of times to 're programme' my brain into recognising that the muscle is there and it will then re connect. Maybe this method could help you. I'm doing this for my 'dead' right knee. Good luck x

[comadreams]

The medical people are yet to embrace holism, they still don't seem to understand that every physical condition and especially it's treatment have equal impact on the patient's psychology and integrate psychiatry as an automatic component of treatment, especially for those that have experienced deep coma for any length of time, If I had been asked about my state of mind as frequently as they took my bloody blood pressure I would have felt like it mattered. Best Wishes for your recovery Anna.

[Anna1001 in reply to comadreams]

Yeah I'm surprised at the lack of acknowledgement or help available for the mental implications of ICU, I was never told it was a possible side effect and even when I mentioned it at my outpatients appointment they dismissed it very quickly. It's a shame seeing as so many people recognise such a significant change!

Thank you very much xx

[Yiva]

Hi sweetheart

I've just found this site today and finally feel more normal than I have since my coma Dec16 / Jan 17. It's sooooo good to know many of my worries, fears etc are not only real but quite normal. I hate my scar on my throat from treachioctomy and all my hair fell out so I've honestly been feeling like a monster. I understand your fears and anxiety as I have them too. I know in time you and I will get better. You are so young with so much ahead of you, unlike me who feels extremely old. I can't offer you any other advise ax I have been given no diagnosis, no follow up, no help, no explanation etc etc but I do know from reading posts on here that it's ok to feel like this. Good luck with recovery x