Have other people on forum declined to use a NIV?

[denise]

Same as his old one. He said I know they have been recalled but it's better Stephen has it rather than it sits under his desk. I'd rather it sat under his desk. Might as well wait until Tuesday when we get the new one. Stephen seems well.

interesting note apparently drawing on a fag keeps the lungs supple. So everyone should take up smoking. Only kidding 😉

[Ellie]

Which NIV machine did they give Stephen? xx

[denise]

Back in Portugal he took to it quite quickly after a few gripes. Having a beautiful technician probably helped 🤔 I thought he's going to be a pain in the bum. He's not going to like this. Wrong he was fine. I'm supposed to do an email exchange with consultant nurse on how to alter settings. This should be fun but he will have a new check over Tuesday and a new machine .

[Mary C]

Hi Denise, I understand how your husband doesn’t want to wear it.I am speaking to respiratory team next week to establish what the consequences are likely to be if I continue not to use the NIV.
Maybe your husband will get used to it if he uses it daytimes first( As advised by Ellie).I did try to persevere but my sleep pattern deteriorated rather than improve.
best wishes
Mary

[denise]

Stephen had a bipap sent by taxi yesterday. It's been set up in hope it's ok before hospital on Tuesday.

NO not wearing that! It's not right. I'm too hot.

after I'd spent ages dragging beds about trying to find electricity and somewhere to stand the machine and set it up. I nearly put an end to his breathing problems 😆

[Ellie]

Olivia H Pleased to hear that. xx

[Olivia H]

Thanks everyone. Yes Ellie, the surgeon is arranging for me to discuss with anaesthatist 🙂 x

[Ellie]

Olivia H
Hi Olivia,

I strongly suggest you talk to the anaesthetist regarding your surgery, often they are the most important person/role in the operating theatre.

I really hope your op, recovery and hospital stay go well.

Love Ellie.

[Lynne K]

Good luck with whatever surgery it is Olivia. If given oxygen it can cause a dangerous level of CO2 building up in you. It’s good that your surgeon is going to speak with your neurologist. I hope that it all goes well for you. Love Lynne x

[LindaB]

There was a discussion in the living with MND thread and Ellie kindly posted this:

https://www.mndassociation.org/profe...mptoms-in-mnd/

[Olivia H]

I have to have surgery soon, a serious condition but not related to mnd. My breathing is fine but they are being more cautious, but I do remember someone mentioning a link about oxygen etc and being aware??
Of course my surgeon is going to talk to my mnd consultant etc, but I wanted to read up. Having said that, I need the surgery.

[Mary C]

Slept well last night minus NIV and with fan on.Woke up refreshed.Visitors coming today.Intend to enjoy the day..despite intense heat.
Best wishes
Mary

[aussiegirl]

Thanks Mary, that cleared that up. Sometimes, it's best to do what you think is right and good for YOU. Glad to hear you have had better sleep since, it is sooo important.

[Heather R]

I have found after initial problems, I now find the Bipap I have fairly easy to use and I seem to have some more energy in the day. If I didn't have this gain, I wouldn't use it, only seems sensible if there is a clear gain, which it doesn't sound it is for you Mary. What sort of NIV machine do you use? x

[Ellie]

You guys are as biased for as I am against.

Not me - my only bias is that my peers get to choose their comforts. xx