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Re: POLL – Non-invasive Ventilation
Why do the council use the ‘disabled’ spaces to store 6ft heaps of snow?
I know what you mean. Ive been off sick all this month but tried to go in onto work on tuesday to be included in the secret santa office party fun stuff. well couldnt get in they have cleared the car park and dumped the snow on the only 2 disabled spaces at the door and the only low kerb. I have a team of snow buddies who help me in/out on bad days but it would have been like climbing a mountan, Im on good terms with the janitor but it was just too much to ask him to clear for me. Cant think that the snow clearer lorry drivers are told to do this, its just pure bad manners. One of my snow buddies took pictures, going to raise it with the health & safety fire person after xmas coz had I not been off sick this would have stopped me getting to work.
Valerie, you do well to use the fancy hotel shower, my last sleep study was in Gartnavel in Glasgow and apart from the ward not having a disabled loo, running water in sinks, the shower area was icky.
We still have a few inches of snow hear in Lanarkshire with only a few little snow showers, still very cold -8 on the car temp thingy but the met weather has lovely rain forecast for next week
and a rise in temp.
Re: POLL – Non-invasive VentilationHi
i’m 14, I’ve been using a Nippy 3+ for a year now, it was devestating to start with because i felt i was loosing my freedom at night, i have a scar in the bridge of my nose from where the first mask i had broke the skin right down to the bone. i love my nippy 3+ now, i’ve been able to have 12 sleepovers in total with it and i’ve been to friends houses with it and had no problems. i now have a naisle mask and althigh it does give me a few little cuts inside my nose, it is the comfyist i have tryed and i’ve tryed a lot of different ones. there are nights when i wish i could just go to sleep without it but i know that i wouldthen wake up eith terrible headeches and feel really ill. I have to admit i do driblle with my mask on at night!!I’m not in a wheelchair and my strain is quite mild, but it still affects me and i find getting around school with the stairs quite challenging.
Lauraxxx
Re: POLL – Non-invasive Ventilationhey laura
I was about your age when I got my first vent. Glad to hear you manage sleep overs (my first vent was massive)
Have you tried vaseline around the outside & inside your nose at night. its goowy but it does help with the little cuts. I also noticed that I got less cuts after I got a humudifer for my vent.
take care
cat
Re: POLL – Non-invasive VentilationThank yo i’ll try the vasiline!! What type of MD do you have
lauraxxxRe: POLL – Non-invasive VentilationThank yo i’ll try the vasiline!! What type of MD do you have
lauraxxxnot 100% sure what kind, originally diagnosed they thought it was a MD peculiar only to me then after a few years they went with minicor then centrol minicore, was given Limb girdil for a few years till a new patholigst re tested my old muscle biopsy left overs and decided it was more like rigid spine (sepn1)..
catRe: POLL – Non-invasive VentilationLaura,
Like Cat i was a similar age when I started using the Bi-pap – have had problems with nose breaking down too over the years.
To those that took part in the poll and discussion – many thanks and even though the poll has closed, keep the posts coming!
73% of those who registered a vote use non-invasive ventilation, most only using it a night time.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: POLL – Non-invasive Ventilationhi i have rigid spine syndrome its part of minicore myopathy
Re: POLL – Non-invasive VentilationThere is a weird smell coming from my vent. Ive washed all the tubing and mask in Fairy liquid like normal. washed they humidifier in fairy too. smell still there so washed it again in baby bottle sterising tabs. now have weird smell with bleachy undertones.
any cleaning tips????
Re: POLL – Non-invasive VentilationWhat sort of smell? I smelt a bit of a smokey bacon crisp smell once lol I think it was overuse, and not long after the motor blew.
Another thought, is it definitely coming from the vent? I know my vent intensifies the slightest smell and one night I woke up smelling something really odd. I thought I must have dreamt it but then it came back later… I came to the conclusion it was the banana skin that someone had put in my bedroom bin – it had been there a few days.
Hope you manage to work it out and get rid soon.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: POLL – Non-invasive VentilationWhat sort of smell?
Its like when you iron wet towls. a sort of steamy burning. not done it for a while but a bit like when we forget to refill the humuidifer and it runs out of water overnight but even more soo. its really bugging me and no one else can smell it.
Re: POLL – Non-invasive Ventilation@catatude wrote:
What sort of smell?
Its like when you iron wet towls. a sort of steamy burning. not done it for a while but a bit like when we forget to refill the humuidifer and it runs out of water overnight but even more soo. its really bugging me and no one else can smell it.
I know, I used to think I was going round the twist ‘cos no-one else could smell it but me.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: POLL – Non-invasive Ventilation@sar78 wrote:
@catatude wrote:
What sort of smell?
Its like when you iron wet towls. a sort of steamy burning. not done it for a while but a bit like when we forget to refill the humuidifer and it runs out of water overnight but even more soo. its really bugging me and no one else can smell it.
I know, I used to think I was going round the twist ‘cos no-one else could smell it but me.
have got to the bottom of weird smell. vent is sick, mositure has got inside machine. have a loan machine and it stinks of cigaretts smoke. have been running it outside all evening to try and clear it, have even taken out the filters but its still there. not going to be a comfortable night till I can retrieve my own old spair one..
Re: POLL – Non-invasive VentilationEeew! Hope you manage to get some sleep with it, without the awful stench of stale fags. Get well soon usual vent!
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: POLL – Non-invasive Ventilation@sar78 wrote:
Eeew! Hope you manage to get some sleep with it, without the awful stench of stale fags. Get well soon usual vent!
Hard a hard time getting off to sleep last night. had a sore head all day today, sore throat and my mouth feels blahh.
my room even smells of fags.. got old spare vent for tonight. its not that accurate but least it dont stink.. lolRe: POLL – Non-invasive Ventilation@catatude wrote:
it stinks of cigaretts smoke. have been running it outside all evening to try and clear it, have even taken out the filters but its still there. not going to be a comfortable night till I can retrieve my own old spair one..
you would have thought that if someone needs a vent for their poor lungs then they wouldn’t smoke!!!!
Re: POLL – Non-invasive Ventilation@lbizzey wrote:
@catatude wrote:
it stinks of cigaretts smoke. have been running it outside all evening to try and clear it, have even taken out the filters but its still there. not going to be a comfortable night till I can retrieve my own old spair one..
you would have thought that if someone needs a vent for their poor lungs then they wouldn’t smoke!!!!
You would think so. but a vent repair guy once told me a story of a patient smoking with oxygen prongs on
Weve had a smoking ban in our house since the very day I got my first vent.
Re: POLL – Non-invasive VentilationIsn’t that rather risky, they could blow themselves up
Re: POLL – Non-invasive VentilationTee hee – I’m ‘in training’ and got my Nippy last week! It took 4 months to get after being desperate from day one – so both me and my husband were so excited to actually bring one home! I’m starting out during the day just to get used to the feel of it and then start trying it at night (which is where I need it the most). I pretty much can’t move in bed and will use the mask that covers my mouth so I’m a bit worried about how to communicate my turning needs or if I panic or something. We are going to try a buzzer so that I can get his attention – I wondered what other people did when they first tried it or could you still move at the time? I can wiggle my fingers so have been using my iphone when practicing during the day to type what needs altering etc. to hubs. Do you find a big difference in settings when laying in bed versus sitting up?
Re: POLL – Non-invasive VentilationHi Louise,
I use two different machines. The VS Ultra I only use at night because it is too powerful when I am sitting. The Bipap Harmony acts as my back up and is what I use in the day but does not give me a good enough breath during sleep.
With the more powerful machine I can just about make myself understood but I use a nasal mask. I would have same concerns as you if I had a full face mask. I take it you don’t get on with the other types of mask? I have a wireless doorbell to alert my carers initially.
Best wishes, hope you find something that works for you,
Sarah
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: POLL – Non-invasive VentilationI use a nasal mask so can still talk between breaths, I can also eat if I balance the eat/swallow breath strategy. I even take mine to the dentist to allow me to sit back and get work done. this took some practice.
I too have night time pyjama settings vent as well as travel/sitting up day time vent.
Something I have noticed is that the Vent feels different if you put it at different height, ie if you are in hospital or on holiday and the bed/table is a different height to yours at home.When I first started on my vent We got a baby moniter but I have found the cordless door bell and my mobile phone the best solution. You will find that you will develop your own vent code sign language to indicate being turned or pillow fixing etc.
My kitty cat is also a great little helper, when my vent alarms go off she causes a fuss till I wake up and someone gets me up. She probably just finds it annoying but I like to think that she has been looking after me for the last 16yrs, making sure that I dont suffacate.
criptic I hope you enjoy your new vent.
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