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Thread: David R RIG Fitting

  1. #21
    Forum Member Boiler68's Avatar
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    Hello..I am hoping my husband will read this thread. He can still manage a soft normal diet and despite me trying to encourage him to have a PEG he flatly refuses. The man is as stubborn as a mule. It's been some months now since I started pulling up a chair and feeding him myself because he was bent almost double to the plate trying to get the food in his mouth due to his extremely weak arms. I said 'enough is enough' because our girls were getting upset seeing him struggle like that. So this positive post from you David I hope will help him.
    Thank you!
    Boiler x

  2. #22
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    Thanks David, and Ellie thank you that mask looks great. Mam is using the mask that came with the NIV albeit with double tape on her nose which is helping. I rang MND team today and Pegs have started up again at our hospital but only for emergencies but they are going to contact the peg team. fingers crossed, Iím so worried.
    Lesley

  3. #23
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    Thank you Ellie. I can see that you are a regular contributor to the Forum. To answer some of the points you mention.
    1. I do wonder whether the tube is too loose. It swivells round quite a lot. It has a balloon retainer and I am confident that has the right amount of water. My wife started training as a nurse but due to dermatitis she had to give up but has some knowledge.
    2. stoma leakage, I am not sure, As I said earlier my wife puts a pad between the button and my skin. Every morning we change the pad. It has been discoloured brownish sometimes red presumably blood.
    3. some granulation and some redness of the skin.
    4. sometimes a little sore. I am 80 but a very active 80 year old and that might be part of the problem. It is not particularly unsightly but very annoying in as much as it has to be dealt with every morning. I am a keen sun worshiper and with the weather last week I spent several hours each day in the garden. I remove the pad and the fresh air seems to help by reducing the amount of discharge. Let's hope for more good sunbathing weather.
    5. Concern from Dr/nurses. I seem to have so manyhelpers/advisers. There is the neurologist and two Nurses in QMC, my local Dr practice, and a firm called Nutricia who appear to be an outside consultant. They supply the equipment monthly, syringes for flushing and the sterile water.The Nutricia Nurse is due on 18th May to replace the tube so perhaps I can get more advice/info from her

  4. #24
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    I have tried twice to respond to you (Ellie) but could not get the reply to go. I was entering a short message and saying that I do not like the MNDA website as i do not find it user friendly and one of my replies appeared from somewhere, which I have now managed to send!

  5. #25
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    Thanks David, I have only just caught up with your thoughts. I will write more later. Stonehengeman.

  6. #26
    Forum Member Ellie's Avatar
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    At a sprightly 80 years young, youíre less of a Stongehenge Man and more of an Iron Age Man


    Nutricia has great customer service (well they do in Ireland, Iím sure itís the same in the UK) so youíre in good hands. The nurse can measure you for the correct internal length tube and check the ooze with PH strips to see where itís coming from - itís unlikely to be blood at this stage unless the blood-rich granulation tissue is bleeding Ė and the Nutricia Nurse will answer any queries you may have, they look after feeding tubes day after day.

    It doesnít surprise me that the stoma site likes the fresh air I donít know if youíd try leaving the dressing off for a few days to see if it improves the discharge but it might be a Catch-22 if itís staining your clothesÖ Next week is due to warm up again

    Sorry you're being frustrated by the website. If you have Word, it may be better to type your posts in it, then copy and paste into the Forum.

    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.

  7. #27
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    Thank you for taking the trouble to reply. Having now read your details my sympathy goes out to you. In some ways my MND problem is nothing as compared to you. I have had 75 years without Pr. Bulbar palsy, And even now I can still eat, somewhat slowly. I havelost my speech . My problem is nothing to what you are having to cope with. Please look after yourself.
    I will await the Nutricia nurse visit in mid May. Stonehengeman. ( I lived for 25 years close to Stonehenge before I moved to Kegworth, close to East Midlands Airport).

  8. #28
    Forum Member Ellie's Avatar
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    Thanks for your kinds words Stonehengeman but it's not a nice diagnosis for anybody, at any age, no matter their situation.

    Stay safe.

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

  9. #29
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    Thanks. As it has turned out I had my RIG inserted earlier than necessary. But I had been warned not to leave it too late. Nothing is clear about MND. Every person is different. I have had anti-biotics, betnovate cream which I am still using (not everyday). I have had "lollipop sticks" for smearing round the stoma. I have had several swabs taken but nothing found so far, although I am waiting for the results of a blood test taken last Thursday. I have not heard of "Flaminal". I had a Botox injection in the cheeks/under chin to try and help to reduce saliva which worked well but needs redoing but it cannot be done while covid-19 is a problem.
    I asked to have the button inserted rather than remaining with the RIG tube dangling down as I am a sun worshipper and the button is far less obvious. I am due a tube change on 18 May.

  10. #30
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    Hi Boiler, Yes, I really hope my information will help him, just a curious question, Boiler 68? does that mean he was a plumber/ boiler installer? Big coincidence if he was because I was a Gas safe engineer and builder and started work in 1968 and I love Elvis.

    Regards

    David

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