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  • Deb
    replied
    Oh no Hayls ! That's awful and so unfair, when you have brave enough to have this done .

    Hope you're more comfortable today and that they have been able to sort this out for you.

    Love and hugs,
    Debbie x

    Leave a comment:


  • Hayls
    replied
    Oh Ellie, you are a real gem, thank you,
    Next instalment, ended up in a lot of pain and started bypassing it, District nurse came out and suspected it wasn’t positioned correctly, what a drama, hope it lasts the night, eeek

    Leave a comment:


  • Ellie
    replied
    Oh Hayls, why are things never bloody easy for us??

    I hope you get an answer from someone with first-hand experience but in the meantime, could it be your bladder spasming because it's complaining about the balloon or could the tubing not have enough slack to allow for free movement perhaps?

    It's worth contacting your nurse in the morning if you're still uncomfortable. There's no blood in your urine, is there?

    And well done on going for it.

    Love Ellie.

    Leave a comment:


  • Hayls
    replied
    Update
    I had my catheter fitted on Thursday and I’m finding it very uncomfortable to sit or lean forward, is that to be expected?

    Leave a comment:


  • Lynne K
    replied
    Sounds great. Take care, Lynne x

    Leave a comment:


  • Catsparkle
    replied
    Originally posted by kd1 View Post
    Hi Hayls,

    Not experience as such, but facing the same decision. I can weight-bear tolerably well, but am increasingly struggling to rise out of the wheelchair (and I already have all the lift a cushion can provide) . I've discussed this with my MND nurse, my OT, and the two carers I really trust. I've also had a phone consult with a urologist. I live alone. The consensus is that a suprapubic catheter is the way to go. I truly don't want to do this, but it is, for me, the least worst option. And as is so often the case with MND, it's not good to wait for the crisis to develop. So once the NHS starts moving again... There will be infections but scrupulous cleaning round the site, and stockpiling antibiotics should minimise the frequency and duration of these.
    Wish I was as confident as I sound!
    Kate
    I can weight bear but only walk A few steps and in the evening not even that.I have been loaned a mobile hoist by ot which we use for loo transfers using an over the loo chair and I'm waiting on a stand assist to get me out of my rec?liner . the whee?led over the loo chair has been invaluable . so even when I can't weight bear I can still use loo.

    Leave a comment:


  • Lynne K
    replied
    Thanks for your reply Hayls and good luck with your op’ happening quickly and safely, love Lynne x

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  • Hayls
    replied
    Good morning Lynne,
    Yikes, it’s not an easy decision, I’m already at the point I need to think about it, right arm completely gone, right leg barely moveable, only thing enabling me to stand is my left leg and left hand gripping the rail but my left hand grip is getting weaker very quickly, I’ll speak to my nurse and see what they suggest, my OT is organising a T40 shower chair that will be able to go over the loo but I’d like to be able to go out without fear of where the loo is, I know I’m grasping on to my old abilities but I want to keep what abilities I have for as long as possible if I can, I don’t want to give up just yet72B2193D-6A0C-4A50-8B4D-6A7F37182088.jpg

    Leave a comment:


  • Lynne K
    replied
    Hayls, Kate, Deb and Ellie, I too have been thinking what to do in a similar situation that is looming. I’ve always tried to be one step ahead of my needs, but this one is more difficult for me to work through. I’m really struggling using my walker and don’t know how long my dodgy hands and arms are going to work. There isn’t room in our wet-room to side transfer. My OT said that it will be her plan to have me move on to an over the loo type of wheeled seat (from my wheelchair) before coming into the wet-room. I think that I must not look too far ahead so that I can use all of my head space and energy to deal with one of the associated problems at a time or else I could become overwhelmed. Love to all, Lynne x

    Leave a comment:


  • Ellie
    replied
    Originally posted by kd1 View Post
    if they decide I'm thin enough
    Oh. My. Days.... How to make a girl feel good

    I know what they mean - it's more straightforward to cut through thin fat layers.

    Best of luck.

    Leave a comment:


  • kd1
    replied
    THe plan is to go for sedation if they decide I'm thin enough, and that will be decided on the day. I have an assessment sometime before then.
    Last edited by kd1; 25 May 2020, 15:10. Reason: inaccuracy

    Leave a comment:


  • Deb
    replied
    Hi Haylis and Kate,

    As Ellie said theres definitely no such thing as giving up too soon. I think us folks with MND are the opposite and tend to persevere with things until they are becoming unsafe.

    It took a bad fall to make me realise that my transfers were not working. I can no longer weight bear at all but my arms are strong enough to transfer sideways to the toilet from my wheelchair and then onto my shower chair. It is a big effort and at one point I was not drinking enough water to avoid going. My physio suggested a she wee or a female urinal thingy to use later in the day or when I am tired . At first I thought it was gross but I have got used to it like everything else and its reassuring to know you can use it when you're out as well. Not a problem at the moment unfortunately ! You do need some arm strength to use it however.

    It's such a problem but we shouldn't avoid staying well hydrated because of toilet worries!

    Take Care and stay safe,
    Love Debbie x

    Leave a comment:


  • Hayls
    replied
    Thank you Ellie and Kate,
    Kate, thank you for sharing your own dilemma, hope the path you’ve chosen works well for you.
    I’ll speak to my Nurse team and see what they suggest, the last thing I want to happen is to add more problems to the mixture but as you say Ellie, skin integrity is a huge concern as I use to be a carer and the sores that we had to treat I wouldn’t wish on my worst enemy, so glad you’ve got regular carers to help you regularly. Me and hubby aren’t in a routine so hydration can be anytime, maybe I need to get hubby in a routine, we both use to shift work so our working hours would be all sorts of times, we are still in old habits, doh
    Take care girlies

    Leave a comment:


  • Ellie
    replied
    Thanks Kate.

    Will the procedure be done with local anaesthetic or a light general?

    Love Ellie.

    Leave a comment:


  • kd1
    replied
    Hi Hayls,

    Not experience as such, but facing the same decision. I can weight-bear tolerably well, but am increasingly struggling to rise out of the wheelchair (and I already have all the lift a cushion can provide) . I've discussed this with my MND nurse, my OT, and the two carers I really trust. I've also had a phone consult with a urologist. I live alone. The consensus is that a suprapubic catheter is the way to go. I truly don't want to do this, but it is, for me, the least worst option. And as is so often the case with MND, it's not good to wait for the crisis to develop. So once the NHS starts moving again... There will be infections but scrupulous cleaning round the site, and stockpiling antibiotics should minimise the frequency and duration of these.
    Wish I was as confident as I sound!
    Kate

    Leave a comment:

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