Please Help - I'm 5 Months Post Induced Coma and Im Struggling. Lack of care, abuse, no diagnosis, no follow up, no help

Hello I am new here as I've only just found you. In December last year I was placed into an induced coma. They started bringing me round after 2 weeks and I regained consciousness after 3 weeks. I had some truely horrible experiences whilst paralysed and unable to communicate much due to treachioctomy. Although I was completely lucid at this point I was slapped, shouted out, forcibly medicated, dragged about and hurt, receiving no dignity during wash and toileting, I had my handbag searched in front of me by a nurse !! I was so scared of the nurses I held back on complaining. They would hoist me and leave me sat for hours on open bed soars until I was sweating and crying with pain, I received no skin viability testing. On top of this I received no physio from physio trained staff just from nurses who kept making me stand from low beds and chairs and getting me stuck because I had not got the muscle strength to stand. I have NO diagnosis as to why I was put into coma, or indeed received no follow up regarding my chest and MRI scans which I was expecting. My GP is chasing hospital up for a second time. I am desporately trying to recover, to become able bodied again. I'm 5 months into recovery but have no idea how long it will take. I am an intelligent middle aged woman who has been reduced to a nervous wreck. I feel I should have complained more, told them no and to stop hurting me. I just can not comprehend how and why this happened. Now they want to write me up in the BMJ and have sent me a draft publication. Their research into my medical history is completely wrong and I simply can't understand how they could diagnose and treat me when it was all based on incorrect information ??? Even my GP is struggling as she can not answer my questions as its not in her experience but I am reliant on her. She has confirmed that no where in my medical records does it say some of the things they have written as my medical history at hospital. But obviously I knew this. As expected I do suffer the nightmares etc bug I understand these. Finally, knowing I'm an undiagnosed anaphylactic the nurses kept slapping creams on me without testing so that I had horrible painful reactions with swelling and soars as well as leaving me with raised soars on my throat as I reacted to plasters. I am now bald as my waist long hair has fallen out maybe reaction to medications may be stress and so very stressed and confused by my treatment. I am thinking of a living will as I never want to wake up in that hospital again or to go through their medical care again. As I live remotely there is little option for hospital choice. I was finally moved from ICU after 5 weeks as I threatened to sign out. I was on a ward for 1.5 days. I was cared for and helped and sent home ???? Please can anyone help me ?

14 Replies

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  • Are you in the UK lovely? If so, look up ICU steps for a support group. Your experience sounds horrendous, so sorry to read this.

    D x

  • I truly believe all your hospital experiences were bad dreams and hallucinations. My nightmares were awfully frightening and I was convinced I was right and the hospital staff were my enemy !!

    My head hair fell out loads due to the trauma of my entire time in ICU and HDU. It has grown back and is just as thick as before.

    Please be kind and compassionate with yourself, this experience has been awful for you but you are a survivor.

    All the very best,

    A

  • I'm sorry but as I said in my post I was completely lucid by the time I remember the abusive situations. I also have several whitenesses. So whilst I do have the dreams n nightmares associated with coma. Like little demons running about. The other issues are from a different time. The not answering of the alarms. The nurse who stood out at nurses station yelling at me. My step daughter, who is a police officer, found me distressed, left sitting on open bed soars and requested nurses put me back to bed, they even refused her !! As my post state both my husband and friend learnt Ro re attach oxygen as nurses didn't bother answering the alarms !! also no diagnosis, follow up treatment, answers regarding brain scan n lungs etc complete disgrace on hospitals behalf

  • Hi Yiva

    You sound like you had/are having quite an ordeal. I agree with BBDEBS - see if there is an ICUsteps meeting near you or an ICU Support Group. Samaritans, GP or citizens advice - might be able to direct you, we have a local voluntary action group which liaises between all the support groups in this area.

    The effects of the medication & sedation on my system were dramatic. I count myself as being fairly level headed ( as do others), I have never experienced such acute anxiety, paranoia and volatile mood swing. I have spoken to many who had delirium lasting weeks after waking from coma, still convinced that the things 'they experienced', actually happened.

    The advantage of being able to verbalise all this is you realise you are not alone and that it is possible to come through all of this.

    Best wishes and hope you start to enjoy some peace of mind.

  • Hi

    Yes I had a TERRIBLE time once I became lucid and understood the disgusting and abusive treatment I received. Family members and friends witnessed it too. I am Concidering legal action. I taught myself to walk with in two weeks. I do everything for myself now and I'm only 5 months in after 2 weeks of hospital telling my family I would die. I have had to as there has been NO follow up care at all !! I left ICU after five weeks, spent a day on the ward and sent home !!

  • Yes, I felt very abandoned after hospital. Not knowing what lay ahead etc...I found talking with others that had been through what I had & had come to terms with what they had been through, immensely comforting. Our group meets every 6 els. Some of us meet up informally each week.

  • I've had no follow up from consultants. No hospital clinics nothing ? My doctor has requested these twice no but still nothing !! I've had to teCh myself everything, my own muscle building etc as I have nothing. It's very lonely.

  • Hi Yiva

    Which part of the country are you from?

    If you go onto your profile - there is an option that tells you whether there are any members of this forum close to you. Why not try and reach out to them.

    If you are Cheshire based - there is an ICUsteps meeting at Rainhill & we are just in the process of asking to be affiliated too. We have a meeting every six weeks.

  • We are in Chester

  • Sorry to hear about your traumatic experiences. My advice is to go to the Patient Advice and Liaison Service, (PALS) at the hospital and report these matters. You could also seek legal advice by going to your local Citizen Advice Bureau.

    Wishing you well for the future.

  • Yes, thank you. I have now enlisted the advocasy service to act on my behalf. So hopefully I am now moving forward

  • I lived in a remote area also in Georgia . The Medical there was horrible . Mine was my Mother and I both . We dealt with what they call race reversal discrimination among other things . it wasn't just that . There are people in the field that are just sick individuals . From the aides to the doctors . I'm not totally turned against all medical . There are good caring Doctors nurses EMTs etc in the field. You just have to shop for them . The idea is , you choose . I will be glad to help you anyway I can . Let me say this before I go any further . After what you've been through . You definitely need a living will . I didn't have one for my mother and they almost gave my mother a peg feeding tube into my mothers stomach .To make a long story short . I did not give my consent . After a lot of research . And then with my sister I just found out she was medically induced and she can't get anything down . I was prepared and we had decided on no life support ,no recessatation . But now my husband and I are seeing it is I believe anything manmade trying to keep us alive that will prolong our life and suffering . I didn't think I needed a living will for my Mother but I'm finding there is a lot more out there . The best thing you can do is to be very determined to get as healthy as you can and get back all that was stolen from you . Let me say this I moved and my mother moved with me and the medical is a problem in big cities as well as remote areas .You know within yourself when something just doesn't feel right . I hope you have a good support group .Get someone to help you with the living will . As for me my husband and my mother we have decided that we want nothing keeping us alive . A medical chat like this helped make the decision to deny consent for my mother to have the peg tube .That and my online research on it . The idea is to be in the know on these procedures .Get knowledge Be informed ..And do not do anything on impulse .I gave my consent on the peg tube to begin with out of panic because my mother has dementia and would not eat . But that was just me in a panic . So try to stay calm so you can make good decisions for yourself . As for my sister , her daughter had that responsibility to make the consent on her induced coma . Anyway .our prayers go out for you and your healing . God speed your recovery . PJ in Louisiana

  • I just want to say that my mother is eating now . I spent one sleepless night making that decision but I know I made the right decision .

  • Thank you for your understanding. My main trouble is that I am retired registered care manager and I understand exactly what these people did. I too am Concidering a living will, purely as I NEVER want to wake up in that hospital again. Sadly I live remotely n have no chance of moving unless I leave my husband. So I'm stuck here. Yes, you are quite right about taking time and I will. Address one thing at a time. I have now enlisted the advocacy service to act on my behalf. My husband is accompanying me to my first meeting next week. My GP has twice asked for hospital to contact me to review both my lungs and my brain MRI, which legally they are supposed to have done. They have ignored both requests !! This meeting has been requested by me to discuss my medical care, diagnosis and prognosis for the future. X

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