icu serviver

[bunnyrabbit1234]

hi I'm new here my name is mick . At the start of 2015 I was in icu in an induced coma for two and a half weeks and in hospital for a total of six and a half . Here we are 3/4 of the way through 2016 and still recovering . Never thought it would take this long but I am getting there . Not having had any help or advice I have found it very hard at times . Is this normal .

[Hidden]

Hi Mick welcome to the group. Yes this is quite normal once you've been kicked out of hospital you're really on your own unless you have an amazing GP. I was off work 7months after my stint in ICU. My GP came out for the first few weeks as I couldn't stand unaided then the expected me to go there. Luckily my husband could take me! You have to be persistent these days at doctors surgeries! If you don't mind me asking what was wrong with you when you were in hospital? Maybe someone on here can give you advise on your illness 😊

[bunnyrabbit1234 in reply to Hidden]

Hi thankyou for your reply . I had pneumonia. Sepsis.pulmanary embolism.and plurasy. I had 3 chest drains. I didn't know anything about the first 2. Good job as the first one went into my liver apparently. I have decided not to go back to work as I am 62 now and l worked for bhs so the decision was partly made for me . So l stopped work stopped smoking and started eating under docs orders of corse . How about you

[Hidden in reply to bunnyrabbit1234]

Hi Mick yes I had sepsis caused by a UTI. I had double pneumonia in both lungs , Takotsubo Cardiomyopathy and problems with my kidneys might as well have everything going that's my motto! Yes it does make you feel rubbish for ages afterwards I'm 66 and just wish I had found this group plus another group I'm in years ago it would have explained a lot of things that have happened to me in the past three years! I have now been diagnosed with PTSD which was caused by being in ICU. My doctor kept telling me it was the menopause live with it! My Cardioligist referred me to someone so I could chat about my insomnia my doctor wasn't interested in my not sleeping! If you want to chat anytime about anything worrying you, we are here for you . I'm back at work but only do 16 hrs a week that's enough I don't have the energy I had before as I still have a problem with my heart plus the PTSD. X

[bunnyrabbit1234 in reply to Hidden]

Hello again colliedog . Yes no one knows do they . Nice to know I'm not the only one to suffer in this way . Good for my wife to hear too helps her to understand . She has been a ROCK for me . She had to wait on me for weeks after I came home . We're you grumpy for a while I was

[Hidden in reply to bunnyrabbit1234]

Hi Mick yes I was grumpy I wanted to run before I could walk!! When I went shopping I had to go round the shops in a wheelchair as I didn't have the strength! My husband wheeled me past all the things I wanted haha! My granddaughter even took me out in it 😱 My girls were a nightmare they had the thing doing wheelies in the supermarket !!!! 😱 I hated people doing things for me but it had to be done despite my grumbling I can do it haha I couldn't! X

[BBDEBS]

Hi Mick, welcome!! Are you in the uk? If so, check out icusteps website and find a local support group, so helpful!!

I left hospital in March this year after 2 weeks in a coma and 3 further weeks on dialysis, I'm writing this from Munich having flown here, first holiday this year, and walked 14k steps yesterday, normally I do 3k in a day. I'm exhausted but with my husband who was told I was going to die and my friends who visited me to say goodbye. I'm now 39 and have to work as I'm the breadwinner. I am under so much pressure I can't tell you, and we are having to move as our new neighbours are so nasty. I've started counselling which will hopefully help xx

I'm keeping a blog comarecoveryblog.wordpress.com which may or may not help xxx

[bunnyrabbit1234 in reply to BBDEBS]

Hi bbdebs thanks for that . Yes my family were told to prepare for the worse. At one point the only organ working was my kidneys. Did you have the dreams mine were so real . Don't normally remember dreams but can't forget these

[BBDEBS in reply to bunnyrabbit1234]

YES!!!! We all had nightmares, awful, violent, nasty ones, perfectly normal but evil nonetheless. That's why I started writing my blog to detail the dreams but I found as I wrote them down, my recall of time was less and less but I still remember the themes.

It will pass, might be worth writing them down in a journal then closing it away so you metaphorically forget them for a bit xx

[bunnyrabbit1234 in reply to BBDEBS]

Yes sounds like a good idea . We kept a diary of my time in hospital and i kept it up for a while afterwards. I read it from time to time that helps . The thing that makes me angry is my GP came out to see me against her will was very rude and told me I had flu and a pulled muscle take pain killers and left so I spent another 24 to 30 hours in bed at home getting worse . With in a few hours of going to hospital I was taken to resus and the rest is history as they say

[BBDEBS in reply to bunnyrabbit1234]

Yeah, I was sent home with antibiotics and pneumonia diagnosis, two days later cardiac arrest and coma!! GPs bless them xx

[angelrock]

Hello Mick, yes, it is completely normal, everyone of us is different and the healing process is matched to how you cope, manage your day and night and finally if you do recover from these unfortunate and harrowing times in your life. I feel very fortunate to have a wonderful family and partner who all rallied round me and reassured me. I also had an amazing hospital staff who supported me as well as a wonderful surgeon who is both unique and very special. I miss them to this day.

My partner and I went on an amazing holiday last year for the first time in years and boy did we enjoy ourselves.

[bunnyrabbit1234 in reply to angelrock]

Hi thankyou for your suport . Yes I would say I am about 85 to 90% there . Just the legs still not the same as before and i get very out of breath if I do anything strenuous. Learning to live with it now .

[Hidden in reply to bunnyrabbit1234]

Hi Mick I'm the same it's been three years and I still get out of breath I used to walk for miles with the dog but I'm lucky if I can do a mile! Some days are worse than others! I didn't have dreams when I was in a coma but I had an out of body experience. My family were told to come and say their goodbyes and I watched from above! I remember my daughter shouting at me wake up you silly old bat!! Then I opened my eyes! I was moved from ICU to coronary care. Speaking of GP's I couldn't get an app the week I was unwell so they gave me antibiotics over the phone for my UTI. Three days worth that was the Monday! Went to bed on the Saturday woke early Sunday morning thought I was having a stroke got rushed into hospital by ambulance the rest is a blur! GP's are not interested anymore it's dreadful 😟 Take your time in building yourself up don't rush things it will happen eventually 😊

[bunnyrabbit1234 in reply to Hidden]

I kept being moved around . The day I awoke from my coma they moved me from Nuneaton to Warwick hospital . A week later back to Nuneaton and then I had two different wards and each my notes took time to catch up so the nurse's did not know what was wrong so expected me to do stuff for myself but had a traccie In so could not talk to let them know I could not even scratch my nose . The staff at Warwick would not make eye contact so I had to pull bits of equipment off to set alarms off to get some attention .O deer do I sound like a bit of a winger

[Hidden in reply to bunnyrabbit1234]

No you definitely do not sound like a winger! Why did the notes not go with you in the ambulance when you were being moved ? That's a bit careless of them! Did you have the dangles in your neck? I had six different tubes attached to a vein in my neck for lots of meds plus another one in my wrist! I had three stitches in my wrist and seven in my neck! Haha you should have seen the state of my nose when they were transferring me to coronary care I looked in the mirror in the lift my nose was practically stuck to my cheek!! Eek!!! I must admit the staff at Ninewells were brilliant they couldn't do enough for me! 😊X

[bunnyrabbit1234 in reply to Hidden]

Yes I had all those things . I had tubes pipes and wires every where and when they ran out of ready made holes they made New ones . They had probs getting my notes to follow me from one ward to another never mind to another hospital . When I first got to a normal ward no one knew what had been wrong with me . They left a bowl of soap and water and told to have a wash ! I could not even scratch my nose . As for personal care that was the worst indignity

[bunnyrabbit1234 in reply to Hidden]

Hi colliedog . I take it from the name your a dog lover . We kept collie cross dogs for around 30 years . All ways bitches. But the last one Sophie was such a lovely dog we dare not have another because we would be comparing all the time and that would not be dare

[Hidden in reply to bunnyrabbit1234]

Hi bunnyrabbit yes I have a collie and she's the reason I'm still alive , if it hadn't been for her waking me up at five in the morning I wouldn't be here! I would have slipped into a coma and that would have been that! I owe her so much 😊Xx

[bunnyrabbit1234 in reply to Hidden]

Brilliant what can I say . I'll put money on it she knew something was wrong . I bet she don't normally wake you up at that time in a morning x

[Hidden in reply to bunnyrabbit1234]

No she doesn't normally wake me up that time of the morning bunnyrabbit1234!! She's a mummy's girl 😊Xxx💜💜

[Luckyone]

Welcome to this great community Mick, just like your doctor mine failed to see the signs and just gave me some antibiotics, 3 days later I was in ICU (I was told later told I should have been dead before I reached hospital) with double pneumonia, severe sepsis, multiple organ failure & later ARDS, I spent 3 months in ICU with the first seven & half weeks completely missing as I was in a terrifying world of nightmares & hallucinations that I can still recall almost 6 years on as if it was yesterday & the diary my wife kept reads like a horror story as I had a DNR placed on me which thankfully was removed the next day, had respiratory arrest when a mucus plug blocked my airway causing 2 cardiac arrests with my heart stopping for 10mins, on dialysis for 6 weeks and having to have 8 units of blood, somehow I survived all of that fairly unscathed apart from serious lung damage in the form of post ARDS pulmonary fibrosis.

Like most people here once you leave hospital it was like you didn't exist and 6 years ago ICUsteps only had 5 local support groups with none close to where I live, so I went through some very dark days until a chance meeting with an ICU nurse at a follow up clinic when she asked me to speak to a patient going through a difficult time, that meeting changed my life as I went on to set up a local support group which became part of ICUsteps, I done talks to hospital staff about my experience and became a trustee of ICUsteps which has led to me speaking at national conferences, before my illness I would have never considered becoming involved in charity work but when you come so close to death it makes you realise how precious life is and how my traumatic experience can be put to good use in helping others through one of the most difficult experiences they will ever have.

I hope you continue to recover well and if you would like to find out more about local support groups you can find details at icusteps.org/support

Bill

[teatimeagain]

Hi Mike,

Welcome to the group, you'll get lots of great advice and support here.

I'm one year on from 'having a long sleep' as my daughters refer to my time in an induced coma following complications during heart surgery. I was in a coma for 2 months and hospital for 6. I missed all of Autumn last year, so am enjoying every minute of it so far.

I too felt a bit abandoned when I got home, initially I had a flurry of visits from my GP and district nurses, but these soon petered out and I was left to my own devices. I'm still very much recovering, I've decided not to return to work as it was quite stressful. I get breathless now when I walk up hill or too fast and also tire easily, it's so frustrating, I forget that I can't do a lot of things and then get upset and angry. My husband and daughters have been brilliant.

I'm lucky that I generally sleep well, as long as I don't start thinking about what happened to me, that's guaranteed to keep me awake! I had very vivid dreams whilst in my coma, I remember them all, but seem to be lucky that they were all very calm and not at all unpleasant, although some were strange. One involved me choosing a fish from a giant aquarium with Joan Collins!! That dream took a long time, towards the end I was getting quite bored.

Healing takes time, I was told at least 2 years, take care,

Regards Celia

[Hidden in reply to teatimeagain]

Hi Celia yes it's quite common to get frustrated and angry especially in the first year you really want to get back to where you were before but your body won't let you. My work was amazing to me they welcomed me back and gave me light duties to do and told me I could have a chair at the till point ! No no I'm fine!! Haha I wasn't but wasn't going to admit that to anyone! Had a few wee wobbles at work my husband drove me there and back for the first few months until I was stronger. I was told it would be at least 2years before I felt like me again not to rush things! I'm still on meds for my heart the Takotsubo left me with a mitral valve regurgitation. I don't sleep well but my doctor won't give me anything to help 😟 Take care xx

[bunnyrabbit1234 in reply to teatimeagain]

Hi thankyou for your suport . I had no doctors or nurse's visit me at home . I had to go through all the usual herdles just to make an appointment to see a doc . The bad moods are the worst thing . I never used to be bad tempered . My wife as been a ROCK through all this I don't know how I would be without her . Still we have been lucky a work college told me his sister had been in a coma for several weeks and is now permanently bed bound . Did not like to ask any more . I am 21 months in and doing quite well apart from the breathing and weak legs but must not complain ha ha

Thanks Mick

[bunnyrabbit1234 in reply to teatimeagain]

Hi Celia it's Mick . Yes I spent a long time trying to get a good night's sleep. I would even wake up in the night thinking and awake again in the morning still thinking .

[teatimeagain]

Thanks Colliedogs, it's so good to hear you're not alone, patience is definitely something I'm improving on! X

[Mrs_Cooper]

Hi, my husband was in an induced coma last year and had some incredible dreams... Did you dream and, if so, would you like to include your dream and experience in a book I'm writing?

Oh and yes, it's very normal... But you will get there.