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Thread: David R RIG Fitting

  1. #11
    Forum Member
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    Dec 2019
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    33
    Hi David

    Welcome to the forum. My Mam was diagnosed with bulbar in November 19. Her speech is getting worse by the day and she is very breathless. She has her Peg procedure booked for last week which was cancelled. I am so worried as she is struggling to eat now, itís getting worse. Sheís normally so strong but cried tonight when she couldnít eat her tea. I will tell her your experience of the Peg. I just hope she can get it done soon.
    Lesley

  2. #12
    Forum Member
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    Apr 2020
    Location
    Ipswich
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    19
    Hi Lesley,

    Sorry to hear about your mum and I hope she gets the tube soon. I can sympathise with her eating issues, it did get to me a bit when stuff kept falling back out of my mouth! this is were the tube takes away the stress and makes every thing seem a lot easier. I just miss all the tastes and get jealous when I see people posting photos of lovely food on facebook they’ve just had.

    I think things will improve soon with hospital procedure availability and you’re mums tube should be considered as urgent.

    Regards

    David

  3. #13
    Forum Member Ellie's Avatar
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    Oct 2012
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    1,573
    Oh Lesley, that's awful to hear, I'm sorry for you both.

    If your mum's MND Clinic and her MND Nurse don't know the PEG procedure was cancelled, please make sure they know and that your mum is now an urgent case as she is at high risk of losing weight and of aspiration.

    If you haven't read the guide on eating & drinking, it's a good source of useful info, as well as recipies for food suitable for those with swallowing problems. https://static.mndassociation.org/ap...b-PDF-2017.pdf

    I read back over your older posts and wonder if your mum ever found a comfy NIV mask?? If she gets breathless during the day, using NIV for a while during the day would help but, if her mask hurts her, well that's not going to encourage her to use it, is it!!! Don't feel bad for insisting on trying different masks - honestly, there is a comfortable out there and she might need different ones for daytime and night, eg a nasal one may suit days and a bigger one for bed.

    This is the type I use now - it's called an Amara View and it's by far the most comfortable mask I have ever used, no contact with the nose bone at all but it sits just under the nostrils and covers the mouth too. Similar masks are the ResMed F30 and the Dreamwear hybrid.

    Amara View.jpg

    Big hug to you both.

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

  4. #14
    Forum Member
    Join Date
    May 2018
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    386
    Hi David and a warm welcome to our friendly forum from me.

    I am so sorry for your diagnosis last year but thank you for your positive posts about your RIG. It's really reassuring to read this and it will have helped lots of us considering a feeding tube in the future.
    It's good to hear you are still active.

    Take care,
    Love Debbie x

  5. #15
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    Join Date
    May 2018
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    386
    Hi Lesley,

    So sorry to hear your mum's operation has been postponed. This must be so scary and upsetting for the both of you and I really hope she gets it done soon.

    In the meantime, I hope you are able to access support and advice. My MND nurse is always my first contact and I make sure she is up to date with any changes although this seems to vary depending on the area you are in.

    Thinking of you both,
    Love Debbie x

  6. #16
    Forum Member
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    Aug 2019
    Location
    Kegworth, near Junction 24 of the M1.
    Posts
    9
    I like David R was diagnosed with Progressive Bulbar Palsy. I had noticed that my speech was deteriorating some 4 or 5 years ago, but it was not until I moved house to Kegworth and signed up to the local Dr Surgery that I followed up the problem. I was diagnosed in Jan 2018 and since then my speech has deteriorated so that my wife cannot understand me. I use a boogey board as I find that easier than fiddling with the iPad. A number of correspondents have mentioned various computer programmes and I have tried ClaroCom but was not impressed.
    I can still swallow, but now it takes me twice as long to eat. I had a RIG fitted on 12 August 2019 in anticipation of when I could no longer swallow. It had been drilled into me that the RIG should not be left too long. I am lucky in as much I have not lost weight.
    I have had problems with discharge around the tube since day one and still am. I do not use it for feeding other than a 50 ml flush every morning. At one stage the RIG popped out and I had to rush to QMC, Nottingham for it to be reinserted. I have had the RIG tube replaced with a low-profile button about 4 months ago but I continue to have seepage. My wife has to clean around the tube every day and insert a pad between the button and my skin.
    This has been going on daily since August when the RIG was first installed.
    I don't know what to do! I have written this only so that others appreciate that a feeding tube is not right for everyone.
    Last edited by Stonehengeman; 30th April 2020 at 18:39.

  7. #17
    Forum Member Ellie's Avatar
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    Oct 2012
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    1,573
    Hi Stonehengeman and a warm welcome to the Forum - sorry you've had to join us though...

    I've had a low profile button since 2008 (well, not the same one obvs )

    I'm sorry you're having issues with your feeding tube - a few Qs if I may!!

    - Do you think it's the right size for you - not too loose, not too tight and, if it has a balloon retainer, it has the right amount of water in it?
    - Is it stomach contents leaking or 'ooze'?
    - Is your skin red, sore, hypergranulated (overgrown out of site)?
    - Is it sore or just unsightly & annoying?
    - Were the nurses/doctors ever concerned about the leakage?

    Really once the incision site has healed initially, the area should be left uncovered to let the air circulate around it and keep the skin healthy - bacteria and fungus love warm, humid spots, so hopefully you can find a way to stop the leaking.

    Take care.

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

  8. #18
    Forum Member
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    May 2018
    Location
    Devon
    Posts
    40
    Hi everyone

    I too resisted the RIG for too long. I thought that I was doing fine although I knew that I was losing weight. It wasn't until I had a conversation with a close friend who is a nurse and doesn't mince her words that I realised that I was putting myself at unnecessary risk and I was in fact severely underweight. I phoned and had it fitted two weeks later.
    I did have some initial over granulated skin that kept reoccurring for no obvious reason and the community nurse kept an eye on it and I had cream a few times but now I have no bother with it x
    I have over night feeding and all my medication through it.
    Don't be afraid of it x embrace it because it will improve your health and quality of life

    take care
    Sarah xx

  9. #19
    Forum Member
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    Apr 2020
    Location
    Ipswich
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    19
    Hi Stoehengeman,
    I’m currently having similar issues with my tube and over granulated skin with daily discharge, I tried the steroid cram the nutrition nurse suggested, no result, GP gave me antibiotics which didn’t solve it so I’ve been in touch with the hospital specialists who sent me a swap test which I’m waiting the results on and they gave me a cream called Flaminal which I’m now trying. My tube should have been changed 4 weeks ago but has been put off because of Covid19 incase it went wrong and I had to go to hospital. The nurse from the hospital said it could possibly be bacteria on the tube which is why the swab was taken in which case the tube will have to be changed. I was going to have the button next time but I’m not sure now because at least with the normal RIG tube you can realise it a bit to clean around it.
    Hopefully this will be solved soon.
    David
    The site has always discharged a bit since day one.

  10. #20
    Forum Member Ellie's Avatar
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    Oct 2012
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    1,573
    David, if it helps your decision in getting a low profile button; they easily turn around 360deg, have a few mm between it and the skin, so they don't sit against your tummy and are easy to clean.

    Sorry yours has leakage too, that shouldn't be the case really.

    Hope that cream works on the hypergranulation tissue responds quickly to the cream.

    Take care.

    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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