Non-invasive ventilation

Last Monday I had a fairly major attack at work; unusally for me I failed to respond particularly quickly to IV amino etc, and got progressively more exhausted throughout the day, until eventually I was put on non-invasive ventilation (BiPAP). I've seen it done to others many times and have always thought that I would never tolerate it, but I was really surprised at how much it helped. I honestly believe it saved me from a tube on this occasion, but as well as that it made the whole experience easier to tolerate, eased the horrible chest wall aching and helped me move a lot more air with each breath. I did find the tight mask claustrophobic and had to take it off for a few minutes every half hour or so, then put it back when started to tire and sats took a dip!

I know that for me it's not the answer to always avoiding intubation, as usually when I get tubed I'm too unwell on arrival (eg unconscious or stopped breathing) for them not to tube me, but I can think of 2 or 3 occasions in the past when it might have saved me from a tube. Since I loathe intubation (as I guess everyone does!) I'm very interested in the possibility of having NIV added to my protocol for the more slow onset, progressing to exhaustion, type attacks I seem to be getting these days.

I just wondered what experiences others had had with NIV as an alternative to intubation, and how hospitals tend to handle it. I know a lot of hospitals don't have much experience using NIV for asthma as opposed to COPD, and I'm a little worried that if it was on my protocol I might just get stuck on it on the ward without someone around who could intubate if necessary.

Any thoughts, ideas, stories welcomed!

Em H

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Hi Emily,

i also have had positive experiances with NIV and been saved from tubes, but as you seem to be aware many hospitals reserve the bipap for type 2 respiratory failure found in COPD, although most of us Brittles will have very similar gasses at the time of severe attacks it is not that well documented and reserched in asthma. having said that i have heard several respiratory cons talking about how it can be a good choise in brittle but needs to be instigated at the right time, too early and you wont tollerate it . too late and you will need tubing anyway.

I do have it mentioned on my protocol that i have had niv and that it can be an option, and have found in londons St Thomas that they are more used to using it on asthma and will instigate it in A+E before taking me to either itu or hdu.

i would go for it and see what happens, if you are well enough on presentaion to A+E and get some say in what is done to you it may make all the diference,

Good luck George xx

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Hi EmilyH,

Sorry to hear that you haven’t been well. When my son had his bad attack they used NIV on him and said that for him it is better because of his rapid recovery he won’t have to deal with intubation. Our doctor also said that sometimes intubation can cause problems that NIV doesn’t. We have it on his medic alert info that NIV should be tried first. We have also been having thunderstorms here in Saskatchewan and both my boys have been bothered by it lately. My 9 year old has been missing school and is just plain miserable. I hope you continue to get better.

Stevie

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Hey Emily

I too have had positive experiences with c-pap and bi-pap. They've saved me from being tubed on a few occasions now. I did find though when I started using it the drs mainly on call drs just sat back and left me to it when I was on it. When I'm bad now though I go to wythenshawe and go in acute to A&E if they feel I should be on it to be on the safe side I'm moved into ICU anyway to be monitored. I don't know if thats just in my case but I think thats what would happen generally if you went acute to A&E and needed NIV. Alot of hospitals don't have NIV yet or NIV services and consultants. Wythenshawe has a very big sleep service thats looks after people with things like muscular dystrophy so they aren't strangers to NIV and use it alot on asthmatics during attacks. I think it would definitely depend on which hospital you went to as to whether they'd use NIV or not. I had NIV added into my protocol last august and I now have a NIPPV (similar to a bipap) at home which I can use to manage minor acute attacks, I know when enough is enough though and when to go in and both me and my consultant are happy with this. It maybe worth asking for it to be added to your protocol being intubated causes damage that NIV doesn't and plus your still awake although when suffering that isn't always a good thing.

tks xxxxx

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Thanks georgie, stevie, tks. It's good to hear other peoples stories.

I know that the official recommendation is that for asthmatics (or indeed for anyone who would be a candidate for intubation if necessary) NIV should always be done in an ICU setting. It's just that I have seen at work that junior doctors have got quite blase about using NIV on the admissions ward for patients with severe COPD who wouldn't be ICU candidates, and I can conceive of them being misguidedly similarly blase about putting asthmatics on it. Hopefully it wouldn't happen but you never know!

My usual costa (not the one I went to this time) is a centre for using NIV in neuromuscular problems but I'm not sure how much they use it on asthmatics, when I worked there I didn't work in ICU so I wouldn't have seen much of it.

I shall investigate anyway!

Em H

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hi,

Cpap was tried with me but i didnt have such a good experience, having a respiritory arrest after half an hours use. I think that if it had been used earlier in my attack then it could have been benificial and saved me from the tube.

The problem with me is that when i get to the state of exhaustion I get a severe headache, and sickness that is stopped by no meds. Having a masked strapped to your face while vomiting every 2 mins is not great!

I have since had a meeting with my Consultant and it has been agreed that instead of letting me get to the state of exhaustion Cpap could be used to try and prevent it progressing.

This would be great as my vocal chords have been damaged from being tubed so many times plus 2 trach's.

I really hope non NIV is the answer for you

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Hi Em

I have used Bi-pap for 2 years now. I use it every night at home with O2 and also it has my intubation tally to about 4 times a year as opposed to the 10 times a year it used to be.

It may work slightly differently for me as I now have a degree of underlying COPD causing regular bouts of type 2 respiratory failure.

Hope you have managed to find some way of including it in your protocol.