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Daytime Vent Use
Hi
I am aware some users of the forum use NIV during the day also.
Last week I met my new Respiratory Doc [the other one retired]. For quite a while now my breathing has been worsening and the other person said I would just have to live with it…used the excuse we would know what to do if we knew the type of MD you had. For the last few months I have used my vent to bail me out during the day against docs wishes but only on mega bad days. My neuro had enquired if I could get to use my vent more but was told not. Upshot is my new resp doc totally listened and understood what I was describing. I now have daytime vent support to be used as much as I need it, as long as I dont over use it or I will become dependant. Never expected this to happen so in shock too!
My Neuro wants me to take vent to work so I can get help when I need it, my breathing seems to worsen as the day goes on but I am incredibly wary of this, for starters carrying it will tire me out. I need to experiment with this and see if it helps. Been told firmly I need to rest more and contact them if I am using my vent too much or its not helping. I normally put up with any problems until my next clinic appt.
So my question is to those forum members who use vent support, particularly during the day how do you manage with using your machine during the day, carrying it around and for how long to do use it. Work are trying to organise a quiet & private place for me. Experiences and advice are very welcome.
Thanks
GillRe: Daytime Vent UseI am so pleased you ae getting support and understanding from your new neuro and from work. I am not a vent user [yet] but I am sure those who are will comment here soon. Sorry, I think our system glitch that downed for board for yesterday may have delayed replies.
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Re: Daytime Vent Usegreat you are getting some progress and help from the medicos.
Mine have said basically the same, but stressing the overuse worry. I alternate it with
my salbutamol inhaler. It just breaks it up a bit.Carrying it other places is just difficult and cumbersome. Are there smaller more
portable versions."Even if you are not paranoid, it does not mean they are not out to get you!".
Re: Daytime Vent UseI’m lucky in that I can just carry it on my chair when out and about – would you want to walk around with it on or is it just carrying it to and from static places?
Before I had a carry case I sat it on the desk and plugged in as an when needed and I had to badger the respiratory team to get me a carry case (the company made a case with a shoulder strap where the vent stays in the bag and there are gaps for the air inlet etc). Paramedics use them this way to carry vent’s that are switched on for patient transfers.
Carrying it around is not an option I guess as it’s too heavy to ‘wear’ so what about a wheely bag (I got a funky one from high street store for about £12 that fit in my laptop and projector when I had to travel round at work so I could have easily carried a vent in it to plug in at my destination. You could probably even just use a luggage carrier (metal frame with wheels) and strap it on (but hospital might not like that for insurance/damage!). That also might look a bit odd?
My vent is quite quiet (the noise of a tv, fan, people talking can drown it out nicely) and after the initial ‘oh what’s that’ curiosity nobody batters an eyelid – I don’t mind being seen with it on and unless I was in a library or somewhere people were taking exams I personally wouldn’t use it in a private area unless I was ‘ill’ and needed a breather from work if you see what I mean. I hope your new day time air feels goooooood :-)
Re: Daytime Vent UseIm useing mine pretty much 24/ due to the angle I need to adopt to ease my back pain. ie flat or tilted back at an angle with feet up. breathing is impossible at this angle.
work. I have yet to take mine into work, still dealing with the trauma of introducing a chair to work. I do how ever carry a vent in my car and I go out and plug in at lunch time. also do this on hospital trips, long shopping trips or day trips. (took it to the beach once)
some of my work mates know about the vent, so its not some huge dirty secret I just as yet dont know how I would adapt to working on a busy callcentre, its hard to make yourself understood on the phone using the vent. I’m hanging off till its a real issue as I cant afford to loose one of my main office tasks. I think I would think about going half days first. I feel alright for the first 3 hours then the purple look creeps in.
I think it good that your work are trying to work a quite place for you. 10 minutes is all it takes sometimes to peep you up.
I think my biggest hang up is the look of the mask. and other people initial reaction. I know its daft and I am working on it. I take mine when visiting family. I used to go hide in their bedrooms but now just hook it up in the living room.
sorry I cant help more
cat
Re: Daytime Vent UseI am also using my vent for almost 24 hrs a day and I think and my consultant agrees that it is chiefly due to posture and the support I need to keep myself upright and not straining my neck, back or putting pressure on my bottom. There could be other issues with me as my latest visit to the Royal Brompton has suggested and I will start a separate topic about what’s been going on recently.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
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