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    Covid and aftermath

    Having jabbed in two brief posts recently, I thought I should dictate a longer post to fill in the preceding eight-week silence.
    But first things first. I was so saddened to read that Matthew had died. He was a great character, a one-off. He gave me many a chuckle. Still, his Hugs, Smile and Early Bird Club will stand as a fitting memorial to him.

    Back to Wednesday 30th March. I had been feeling rough most of the day and by the evening my breathing was not very good. I remember discussing whether we should call an ambulance, which is what the carers wanted to do. But then I remember nothing until waking up the following morning in the Osler Respiratory Unit of the John Radcliffe Hospital with a consultant in full PPE explaining to me that I had been admitted with Covid. There began perhaps the most uncomfortable three weeks of my life.

    I was hooked up to all sorts of tubes, leads, and IV lines and rendered virtually mute by a large full-face mask. I was isolated in a large, airy room on my back staring up at white ceiling tiles. All sorts of anti-viral drugs and other meds were administered and blood oxygen and CO2 were monitored frequently. After ten days I was pronounced Covid-free.

    In the meantime an ambulance collected my electric wheelchair from home and my two Nippy NIV machines. On Monday, 11th April I was transferred to my chair, to come home, whereupon I collapsed with a respiratory arrest. I have no memory of this but they were obviously successful in resuscitating me and I spent another five days flat on my back in bed, during which time a team of nurses and physios practised transferring me to a stretcher trolley with the aid of a slide board, with the aim of discharging me on a stretcher. At the last minute, the stretcher idea was abandoned, and I was sent home in my chair, a couple of days after Easter.

    I left hospital with no respiratory hangover but some rather nasty indirect side-effects. I had two screamingly painful pressure sores and developed a rash over most of my body which was attributed to an allergic reaction to one of the antibiotics. The rash faded after a few days, except for a patch on my left thigh, which lingered a few days more. This is now the site of a strange numb feeling in that area.

    District nurses as well as my regular carers worked on the pressure sores which, thank God, have now healed. A bonus is that I have been given an airflow mattress.

    The combined effects of isolation, immobility, and drugs played havoc with my mind. I virtually lost my powers of concentration and it has taken all this time to get back to anything like normality.

    Thank you for starting the thread about Ellie. I was pretty certain I wasn’t the only one who loved her to bits!

    Doug

    Diagnosed April 2017

    #2
    Oh Doug
    dare I ask if you've had your covid jabs? Only what you went through sounds absolutely terrible. Think we all need to read this and realise we still aren't safe and need to be as careful as possible still. I worry, that Stephen is at day care, and how vulnerable that leaves him as I've done my best for sometime to keep both of us away from everyone. On the other hand if we don't see anyone it can drive us nuts. My daughter is a teacher and she worries she could be bringing it to us. But if I don't at least see them once a week what's the point of being here.

    I'm so glad you are recovering because you really had us worried.

    Lots of love and hugs
    Denise xxx
    when i can think of something profound i will update this.

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      #3
      Hi Doug,

      Thank you for sharing and I’m so sorry to hear of your horrendous Covid experience 🥺🥺🥺

      It is hearing stories like this that makes my blood boil when I see social media posts from anti-vaxxers and the such like claiming that Covid is nothing but a cold or some made up story from the government. I wish you well with your recovery and hope you stay safe.

      take care, James.
      Foxes Never Quit 💙

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        #4
        Doug lovely to hear from you, thanks for the update. What a horrendous experience you have had, so glad you are home and pressure sores are better. Love, Heather x
        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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          #5
          Hi Doug, I’m sorry you’ve been through so much lately but glad you are on the mend ❤️‍🩹 lovely to hear off you Janette x
          Janette x

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            #6
            How nice to hear from you Doug, but my goodness what an awful experience you have had.

            I am glad you are back home and hope the pressure sores are healing x
            Diagnosed 3rd November 2021 Bulbar Onset

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              #7
              Yes Denise,, fully jabbed.

              Thanks all

              Doug
              Diagnosed April 2017

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                #8
                Glad to hear from you Doug Carpenter as I had been thinking of you and hoping to see you well enough to be back here.

                Sounds like you have really been through a lot and this was a good reminder that we need to be cautious and not assume the Covid will be a breeze. I have managed to avoid it so far, but I think your experience has made me realise if I do catch it I shouldn't wait to see if I get really poorly before acting, which is my usual approach.

                I hope you are feeling better with each day xx
                Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                  #9
                  Hope you continue on your recovery from COVID with no other long term effects. xx

                  As if you don't have enough to cope with. I must admit I am still worried about COVID and get quite frustrated with much of the population who think we are back to normal.

                  Get well soon xx
                  Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                  Respiratory and blood gases still within normal range.

                  No speech but sense of humour still fully intact.

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                    #10
                    Doug Carpenter Thank you for taking the time to dictate your story Doug.

                    Onwards and upwards 🤗🤗😘😘
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                      #11
                      Doug Carpenter What a nightmare experience, and a salutary warning. I don’t understand why vulnerable people (like us) were not eligible for the Spring Booster.
                      So glad you are recovering now.
                      Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                        #12
                        Really good to hear from you Doug. You have just proved the old saying “ you can’t keep a good man down” is true.

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                          #13
                          Oh my goodness Doug. That sounds horrendous what you have been through. So good your here to tell your story. Sending you a massive hug and best wishes. Take good care of yourself 😘

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                            #14
                            I'm so sorry you've had such a terrible time Doug Carpenter.

                            However, it's lovely to hear from you and so glad you're home x😘💕🤗

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                              #15
                              Doug Carpenter what a traumatic experience you have had! I'm not surprised you haven't been able to concentrate on much, I should think your brain has been fully occupied making sense of everything you have been through.

                              Glad to hear things are improving and you are now back home. Best wishes 🤗🤗
                              Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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