Advice for a newbie please: Hello all, I'm hoping... - Headway

Headway

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Advice for a newbie please

13 Replies

Hello all, I'm hoping that someone can give me some advice - 9 weeks ago, my husband suffered a cardiac arrest whilst driving alone. Although he received lots of help at the scene his brain was starved of oxygen for too long and we were told after six days in ICU that he may never wake up and he has 'no hope of a meaningful recovery'. Since then his eyes have opened and he has appeared (very slightly) more aware at times. He has a tracheostomy and is PEG fed. He has been referred for rehab at both Putney and Northwick park and I wonder what experience any you have of either of these places?

Many thanks in advance, Jane

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13 Replies
razyheath43 profile image
razyheath43

Welcome to this amazing forum! I donot have any expriance in this feild of Brain injury, but it sounds as though your husband is taking small steps keep us posted? raz

in reply torazyheath43

Thanks Raz, I will keep you posted. Jane

HopeforTony profile image
HopeforTony in reply to

hey so sorry to hear whats his update how are u

randomphantoms profile image
randomphantoms

Hi Jane and welcome.

Like Razy I don't have personal experience of either of these places.

You could ring the Headway helpline 0808 800 2244 office hours and chat with them.

Thinking of you both.

in reply torandomphantoms

Thanks Random; I have spoken with the Headway team - they've been really helpful. Jane

randomphantoms profile image
randomphantoms in reply to

You are very welcome Jane.

It's what we try to do in the forum.

sca2013 profile image
sca2013

No, however I too survived cardiac arrest and sustained anoxic brain injury as a result. I am happy to answer any other questions you may have based on my experience and new life, which is definitely different than it was before. I am sorry you and your husband are having to go through this and wish you well on finding the resources and help you seek.

in reply tosca2013

Thanks for your reply sca; would you mind telling me what your initial prognosis was? I'm glad you were able to make a recovery, although I'm sure it's been a huge adjustment for you. Jane

sca2013 profile image
sca2013 in reply to

I apologize in advance for the long answer - Cardiac arrest and revived me on Thursday, pacemaker implanted Friday, sent me home on Sunday and said I could return to work Monday, which was a complete joke. They thought since my vitals stabilized pretty quickly after being revived that I would do fine. My wife took me to my office on Tuesday. I called her after being there for only one hour and I was completely exhausted, couldn't remember how to use the computer, my passwords or pretty much anything. I'm still not sure how I figured out how to call her, but I did. Turns out that during the cardiac arrest event I also had a grand mal seizure, which apparently broke plenty of wiring in my brain. Over the next few weeks my abilities deteriorated and I couldn't figure out why. So when I went in for a followup and I asked what the problem was. The doctor told me she thought maybe I had anoxic brain injury from the events. I asked her what I would be experiencing if that were true. She read off a long list of symptoms and I said yes all of those. After some more examination, I was diagnosed with Anoxic Brain Injury. Anyway plenty of learning about all that took place and finally about two years after that they did a Neuropsych test and found - Scores on my verbal memory were in the Low Average and Borderline range. Additionally there are demonstrated deficits in language and executive functioning. Specifically, he struggles with tasks involving phonemic fluency. The doctors said: "It is unlikely that I will regain my previous level of cognitive functioning. Now almost 4 years after the event, I have to say this has proved to be pretty much true. Regarding my recovery- I don't know that it has been so much a recovery but more of a I am learning to create my new life minus some of the things that are no longer part of it, because of what got damaged during the event. The more I thought I could get my old life back the more frustrated I got. I learned to grieve and let go of the old me and get on with creating the new me. I continue to wish you and your husband well in creating your new lives post cardiac arrest.

in reply tosca2013

Thanks for the reply - I'm amazed you were sent home so quickly, let alone saying you were fit to return to work so soon! I'm sorry that you've had such a difficult time finding answers and had to adapt to a 'new you' - but the new you sounds great to me! Everybody's story is so different and I'm afraid that my husband is so unresponsive that we'll probably not get any of him back.

Jane

sca2013 profile image
sca2013 in reply to

I'm so sorry you're having to go through this. Wishing you well in being able to deal with this changed life you have now.

Towards_Healing profile image
Towards_Healing

Hello Jane. Firstly, I am so sorry for your husband and for what you are going through. I will be keeping you two in my prayers. Secondly, I do not know these places as I live in the US, but I want to share with you this video containing information about fish oil and its benefits for brain injury. I hope this youtube video works in your country. If it doesn't, please search on the benefits of fish oil for brain injured people. Good luck. We are here for you. youtu.be/UXXy0dIVXUw

in reply toTowards_Healing

Thanks for the info TH - I have heard about the benefits of fish oil for brain injury, but unfortunately the hospital won't allow supplements. Jane

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