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  1. #1
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    Hospital Expreriances.

    Hi Everyone

    I wanted to discuss my recent experience in hospital for getting a Rig tube inserted and ask others here on the forum not about the specific procedure itself but more generally about being admitted to a hospital due to complications associated with MND and how they found it. First a little about myself. I'm living in Ireland and was diagnosed around 4 years ago with MND. I had symptoms in my arms for around 18 months before that on and off and delayed going to the doctor as I thought it was pretty trivial. Once I went to my GP my diagnosis was quick enough by a neurologist two weeks later. I currently attend an out patient clinic for MND every three months and I have access to the community OT and nurse along with a Speech therapist. Carers come in each morning to help clean and dress me and we are currently exploring getting more home help. I also go into the hospice roughly once every four months for a week of respite and I have access to the palliative care team there. I live with my parents as I'm single and aged 43.

    I found the hospital visit for the Rig quite trying. My stay lasted 19 days which was longer than I thought it would be. The reasons for this include the medical team over here being cautious about the operation and testing everything prior to going ahead with the procedure. Also on the first attempt one of the drugs given to me for anesthetic caused my heart rate to accelerate suddenly and I had to abandon it for another few days. Even though I was on a neurology ward and the care staff were well used to dealing with MND. Actually there was another patient there at the time with the disease. Although the staff are experienced I found communication slow and difficult with my eye gaze system. Shift changes and new staff each few days was a pain as you felt like I was back to square one with communication. That said I have nothing but praise for the staff who were excellent and very hard working. They did their best to ensure my stay was comfortable. I did have issues during the stay mostly with the toilet and sleeping on a busy ward.

    So after the stay in hospital and reading a few threads on the forum I'm wondering about two or three things really. The first one is pretty straight forward and it is this. I now have a Rig tube in along with a foley catheter. Both of these are working well for me and I'm happy. Are there any other standard things like these that mnd patients get hospitals to put in. I can't think of anything else but do other people with mnd a long time have other implants like ventilators attached or something else I should be aware of down the road.

    The other really important question is how often do people need hospitalization and what are the reasons behind it. I can cope with mnd itself and with carers and the hospice but the thought of frequent hospital stays is getting me down and isn't something I would like to face. So what is the best way to avoid them and how do people cope with it especially with the difficulty in communication with staff. The rig tube stay was OK but that was a specialized neurology ward. I spent two nights in a general Hospital last year when I could still talk and I found it very difficult to cope in general. The staff where good but not used to mnd patients I guess.

    Any one with any experiences of what I'm getting at I'd love to hear your thoughts on it.

    Mick.

  2. #2
    Forum Member Ellie's Avatar
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    Hi Mick,

    Despite the longer-than-planned hospital stay, it sounds like the experience wasn’t too bad, at least relatively speaking - hospital stays are challenging, and particularly so with no speech.

    When you say “implant” for ventilation, it sounds as if you’re thinking of getting a tracheostomy (hole in the neck) and use invasive ventilation? I’d suggest getting clearance for the homecare package first from your HSE Disabilities Services Manager, or you’ll either find yourself stuck in hospital waiting for its approval , you’ll have to self-fund care (you can’t really be alone with a trache & vent) or be increasingly reliant on your parents.

    A NIV / BiPAP / Nippy machine which gives non-invasive breathing support and is much more common in MND (in this part of the world) often does not require inpatient stays - certainly in our Clinic, they try to set you up with the Nippy at home. They know your SNIP results and/or PFTs, so you’ll probably wear an oximeter overnight at home, send it back to Clinic and you’ll be visited by a nurse and technician who’ll set it all up for you.

    The most common reason for a non-elective hospital admission for those of us with ALS/MND is to treat (aspiration) pneumonia or chest infections, so the obvious thing to do is to try and avoid getting one in the first place…

    Have you access to CIT Nurses, Mick? The Community Intervention Team’s aim is to keep you out of hospital or to get you home from hospital ASAP and they can set you up on IV antibiotics, among other things, without the need for a hospital admission if appropriate. My GP referred me to the CIT and they do bloods, PEG problems, urinary problems (handy for your catheter) etc, and are generally available from 8am – 9pm, 7 days per week (depending on where you live)

    Your hospice might admit you to treat pneumonia or a chest infection - do speak to your palliative nurse about treatment options which do not include hospitals!!

    Finally, if you haven't done so already, get the flu shot and the one-off PPV23 vaccine, which protects against most community acquired pneumoniae, and try avoid people with coughs & colds.

    You’re doing really well for having MND 5+ years, though that’s a subjective phrase, as none of us want this damn disease in the first place!!!

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

  3. #3
    Forum Member Terry's Avatar
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    Hi Mick,

    Sorry to hear that you were so long in hospital for a simple small opp that doesn't need a general anaesthetic.

    Hospital stays are horrendous for us that can't talk because of the consistently changing staff and the lack of time they have. I last stayed for one night when I had my RIG about five years ago and my wife had to really stay with me.

    As Ellie says, hospices are normally much better places to stay and recover in.

    I think that probably the main reasons for us ending up there are, falling, breathing related issues and sometimes constapation.

    Good hygiene practices, especially by your carers and flu and pneumonia jabs should reduce your chances of hospital stays.

    You are more likely to get a UTI because of the catheter so look out for any symptoms and get early treatment if necessary.

    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.

  4. #4
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    My only hospital stays have been to have PEG inserted and then 8 years later to have it replaced. However, I did have a major fall down the stairs resulting in a four week stay because of a fractured pelvis. I agree that communication was the main problem. Like Ellie, my NIV is now monitored at home after thr initial hospital clinic visit for assessment.

  5. #5
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    Hi all

    Thanks for your positive answers. I certainly feel better after reading them. I have always gotten the flu shot since been diagnosed and it's worked out so far.

    I do have a nippy but I'm guilty of not using it very much and never at night time. Will try and be more consistent with it now that my rig is in place and have no problems with it.

    Ellie as usual you are full of surprising information. It was indeed the ventilation I was trying to think of and to be honest I don't like the sound of it. I don't want to go down that road. And I've never even heard of a cit. It's something I'm going to look into and try get on the support team I have around me.

    Mick.

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