Page 18 of 21 FirstFirst ... 81617181920 ... LastLast
Results 171 to 180 of 208

Thread: Hello I知 Douglas

  1. #171
    Forum Member
    Join Date
    Oct 2018
    Location
    Trafford, Gtr Manchester
    Posts
    111
    I suppose I should have expected that MDT meeting but I didn’t

    Apparently I’m a difficult case and nothing they can do gets the CO2 down to a safe level

    So much so that the risks of PEG and of RIG are too great so neither can be done.
    They actually said there would be great risk of not coming round from the anaesthetic in either opp

    So the idea is to get home in the next 2 weeks? The Nippy + cough assist will help
    Last edited by Dis1960; 28th June 2019 at 17:36. Reason: Clarify

  2. #172
    Forum Member
    Join Date
    Jul 2018
    Posts
    312
    Mick had his rig done with his nippy on.

  3. #173
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    354
    Sorry that things are so negative for you, Douglas. I hope you'll be able to get home soon.
    Dina


    Trying to keep positive, but not always managing.

  4. #174
    Forum Member
    Join Date
    Feb 2019
    Posts
    156
    It seems strange with this peg/ rig situation, I suppose every hospital is different I was told if I had a peg I would have no sedation only a throat spray. Anyway Douglas I hope you get home very soon.

  5. #175
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    3,156
    Quote Originally Posted by Dis1960 View Post

    So much so that the risks of PEG and of RIG are too great so neither can be done.
    They actually said there would be great risk of not coming round from the anaesthetic in either opp
    Anaesthetic is NOT used in a feeding tube procedure. I do understand their reluctance to do a PEG procedure if your CO2 is consistently >6.0kPa, but not a RIG procedure, given you can be fully awake for it.

    In the PEG procedure, the person is usually lightly sedated but it can be done awake, with just the throat numbed, so swallowing the actual endoscope is a more pleasant experience. Local anaesthetic is used at the incision site. The PEG procedure can be done in the Endoscopy Suite, rather than an operating theatre.

    In the RIG procedure, the person is awake throughout and can wear NIV at all times. The RIG procedure is done using X-rays.

    If they won't give you a PEG or RIG and you still want some type of feeding tube, an NG tube can be inserted through your nose and down into your stomach and will allow you to take the same supplementary feeds and fluids as through a PEG/RIG feeding tube.

    Sorry your CO2 levels remain high. Do you know your oxygen sats level? (it's a %)

    Big hugs.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #176
    Hi, Doug's wife here. He wanted me to give my impression of the meeting, although I am not sure there is much value in my doing so. It appeared to me that he was being given the choice between quality and quantity of life (although they seemed to be making it clear there would be very little quantity no matter what).
    They did say they were unwilling to risk either PEG or RIG. Doug was told he stick to the pureed diet which he dislikes but is 'safer' or eat/drink whatever he wishes and accept the attendant risks.
    They APPEARED to be saying that he presented one of the most complex and difficult cases they have encountered.
    As his wife, all that really came over was that his prognosis is very poor and that he has even less time than I thought - I have been shaking slightly ever since and still am at this moment

  7. #177
    Forum Member
    Join Date
    Oct 2018
    Location
    Trafford, Gtr Manchester
    Posts
    111
    The main problem with the meeting was the insistence that a feeding tube would not extend life whilst ignoring lack of a feeding tube increases the risk of dying earlier from an aspirational pneumonia

    Oh and they seem to have made the choice for me as tomorrow’s menu is from the soft not pur馥d diet
    Last edited by Dis1960; 29th June 2019 at 14:59.

  8. #178
    Forum Member
    Join Date
    Jul 2018
    Posts
    312
    I dont understand why they couldnt do the rig, there is no anaesthetic, Mick just wore his nippy.

  9. #179
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    3,156
    Oh Chris, I am so, so sorry to hear that - it's no wonder you're shaking.

    If you feel there is any ambiguity in the language used and you want any aspect of Douglas' care clarified, please do ask - you shouldn't be left wondering about anything.

    It's an unbelievably hard situation for both of you and you may need to have difficult conversations as to a care plan for Douglas.

    At this stage, he shouldn't be almost forced to eat tasteless mush - if he wants to continue with full nutrition he can ask for an NG tube be inserted just as he is, no sedation, no meds required.

    Or he may opt to eat and to enjoy what he wants and ignore the 'Jaffa cake' test. That's what I mean about having a chat about priorities.

    Was palliative care discussed at the MDT meeting?

    Again, I'm so sorry you're both in this situation.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #180
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,670
    Thanks Chrissie and Doug,

    You are stuck in a hard place. I can't understand why they are unable to lower your CO2 level, it seems simple but I can only guess that something more complex is wrong.

    Ask for a alternative if you have trouble with soft food and try to get a few fortified drinks in your cupboard for top up and back ups.

    Yes you could have a RIG opp but I guess that they don't think it's worth it at the moment.

    It would put you through some discomfort etc and cost them.

    Please look and see if you can be transferred to a hospice for the next two weeks as I think that both of you would be more comfortable, unless you have a side room there.

    Hopefully at home you can sort things out and just maybe lower your CO2 levels with Ellie's help, can't do much worse.

    Hugs to both of you.

    Love Terry

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •