Announcement

Collapse
No announcement yet.

Shock to the system

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Shock to the system

    So, a doctor from my local hospice came yesterday ostensibly to talk about CHC funding. Imagine our shock when she told me and my husband that she could see a marked deterioration in my breathing from 2/3 weeks ago and so we should prepare for the worst - DNR forms, where I wanted to be when I died etc etc. she said it was stuff we needed to talk about and I suppose it had been at the back of my mind but it ended up being a very deep and upsetting conversation. We are still reeling. It’s almost too much to take in. 😢 But as they say ….. never a dull day!!!

    #2
    Oh Sarah how shocking for you. Did you feel that your breathing had become worse? How did the doctor know this?

    This will make you very anxious so have they explained how they can help re anxiety etc. Big love and hugs x
    Diagnosed May 2021 bulbar onset als.

    Comment


      #3
      That doesn’t sound very caring. I had a similar situation in January this year. The hospice doctor told my husband I was reaching the end and advised doing the DNR forms. I sorted my funeral with the vicar BUT I then spent 10 days in the hospice, medication was altered and I began to feel the doctor was wrong. I was given exercises including breathing exercises to do and I feel pretty good. I am getting weaker, falling over etc. But I don’t think the end is nigh yet. So hang on in there, sort your plans out, then forget it, and carry on living.
      Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

      Comment


        #4
        Sarahw sounds like an awful conversation and no wonder you're reeling. It's good to plan but maybe this doctor's style and delivery wasn't the best.
        Take care xx
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

        Comment


          #5
          Oh Sarah, it's an incredibly difficult subject to chat about when it's a planned conversation, so I cannot imagine what a shock it was when the Doctor brought it up when you weren't expecting it - I am so thankful that your husband was at home with you, though I know it would have been difficult for him also. (FWIW, personally I find a difference between my Palliative Care Nurses and the Palliative Care Doctor)

          As Shelly asked, how do you feel your breathing has been in recent weeks?

          Originally posted by Sarahw View Post
          ... a doctor from my local hospice came yesterday ostensibly to talk about CHC funding.
          Lastly... was CHC discussed?

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

          Comment


            #6
            Thanks everyone. Ellie - I thought the whole purpose of the meeting was for CHC!!! It is being dealt with though. I thought my breathing was about the same!

            Comment


              #7
              Sarahw If you were nervous or stressed about the meeting, that may make you breathe differently too. 💪 xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Oh Sarah that's not nice. If it's any consolation Chris's breathing has been terrible for years, 24/7 ventilation and he keeps going.

                Comment

                Working...
                X