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    #61
    Originally posted by shrew View Post
    assume u had something so didnt feel pain?. x
    Shrew,

    A local anaesthetic is used for the (very small) incision site. An antibiotic is also routinely given.

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

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      #62
      So pleased it's all over and done with.
      Hope you soon recover and start to feel tons better.
      Lots of love Helen XX

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        #63
        Recovering but not out until Tues!! This hospital is on its knees and definitely not equipt for disabled people. I will be writing a complaint. I know it's a real hassle getting me to toilet as it's a hoist. But last night one bitch got me back to bed and said (all shitty) "it will be a bed pan in the night" bloody scared to ask for anything. They've been lovely today though. Not looking forward to them finishing their shift! There's been only two of them (one went off sick) covering 3wards!! I was so upset this morning I rang my mnd nurse and ot to ask if I could go to weldmar for recovery. They had a bed available but the Dr there advised me that I should stay here as I still need medical care and got to get me feeding with tube. The palliative care nurses got involved and they got them to let my husband to stay outside visiting hours. He cares for me alot better. Its silly things like needing to get stuff I can't reach etc. I asked for a side room but didn't hear back on that. I thought that way if I needed the loo I don't mind going on a commode in private.

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          #64
          Oh Pink, that is NOT what you need

          Get Mick to talk to PALS - Patient Liaison Services - to see how things can be improved for you.

          When they do start feeding you through the tube, insist on a small amount and slowly, especially with your tummy issues.

          Wishing you well.

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

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            #65
            How disappointing and frustrating Pinkelle.
            If you can’t feel safe and cared for in hospital, we have lots to worry about.
            I hope you can get home soon.
            Marigold

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              #66
              That is just awful Pink, I really feel for you.
              I think it just shows that there is massive lack of understanding of how MND affects us and the problems we face.
              I hope you're care improves, and Tuesday comes round quickly for you.
              Much love
              Helen xx

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                #67
                Ellie I have insisted they don't try and give me too much. I get so full really quickly. I've had 500mls over 20 hours to begin with.

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                  #68
                  Hi Pink,

                  That is very poor but so many hospitals don't have enough staff to deal with us especially if we can't talk well.

                  I only stayed one night and my wife stayed with me after they would not look at my communication sheets etc.

                  Feel for you.

                  Love Terry
                  TB once said that "The forum is still the best source for friendship and information."

                  It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                  Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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                    #69
                    Oh Pink, How awful !
                    I do hope you are more comfortable and that you get home soon,

                    Thinking about you,
                    Love Debbie x

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                      #70
                      Thanks everyone. I've just resorted to weeing in my pads and getting them to change me. Just as well as by the time they come to you get on hoist etc. I'd have done it anyway. Saves the indignity and of being wheeled out to a toilet on a commode!

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                        #71
                        Oh dear Pink so sorry you are having such an awful time .
                        I hope the hospitals up here are better , because if I thought they were the same it would put me off having the operation. I know they are all understaffed but the care of patients shouldn't suffer.
                        Wishing you a speedy time up to Tuesday !
                        love Chris

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                          #72
                          Talking about indignity. When I had a toe joint replacement about 8 years ago, after a day or so I'd have to use a commode by my bed. The day staff nurses would pull the curtains around for my privacy. But the night sister gave me a firm hard nosed order to use the commode without curtains around which was totally insensitive of her and was embarrassing for me. I wondered how she would have felt in a similar situation. Some people are in the wrong jobs. They give our amazing NHS a bad reputation. Obviously the Government cuts have made things worse. Good nursing staff do their best but the less good take out their stress caused by a heavy workload on vulnerable patients. More money for our NHS is needed. Lynne
                          Last edited by Lynne K; 22 October 2018, 10:39.
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                          I'm staying positive and taking each day as it comes.

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                            #73
                            Sorry to hear about your bad time in hospital Pink. Some nurses are aloof in their role, some are kind and really caring. When hubby has to have this op I won't be leaving him especially seeing as he can't talk well or spell well. My darling will be ok with me there.

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                              #74
                              Originally posted by Pinkelle View Post
                              Ellie I have insisted they don't try and give me too much. I get so full really quickly. I've had 500mls over 20 hours to begin with.

                              I also started @25 mls/hour but only got 100mls (4 hours). However, I hadn't lost weight, you have, so I gradually built up to taking 500mls @125 mls/hr over 4 weeks..

                              Are you tolerating the feed well - I hope you are...

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

                              Comment


                                #75
                                Update... After being home only a few days I was re admitted. But I refused to go back to the hospital so they got me into the weldmar hospice where I come for clinic. I felt so poorly and breathing was bad. Chest infection. So I couldn't be getting any better treatment. What a difference. I've been here a week now and I'm slowly beginning to feel better. As soon as we entered the building I felt safe and calm.

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