Home nebs

[Kelshaw2011]

Hi all hope everyone is doing well I am new to this forum and just wanted to hear about anyone's experiences with home nebs. I have had 4 hospital admissions this year 3 being in intensive care I am on a few different medications for my severe asthma, seretide 500 accuhaler, flixotide 500 accuhaler, spiriva 18mcg inhaler, my salbutamol reliever, I also take monteukast,carboccisteine,phyllocontin,lansoprazole as I have been on long term steroids (pred) the consultant has now agreed with my gp in that I would benefit from home nebs would I be better discussing with my consultant regarding when I should go to a and e as this is something that worries me leaving it too late I see my respiratory consultant every 2 weeks due to my asthma being so bad has anyone else got severe asthma like mine and on home nebs would love to hear your experience with them TIA

STAY WELL EVERYONE

[EmmaF91 Community Ambassador]

Hi and welcome to the site! So to hear you've had it so bad recently

From the sounds of it we're on similar types of drugs... tho thankfully I've so far managed to stay out of ICU (but have had a ridiculous no. of trips to a&e).

I have a home neb which I use for 'emergencys' rather than daily treatment because I had hit the point of basically weekly nebs at my GP.

Mine came with 'rules' about when to use it and when to get more help etc, so for example if I drop to my PF red zone I can have one, I can have a maximum of 2 in a day (back to back or separate) then I have to get more help - GP or hospital (this includes using ventolin as a neb too... so 20 puffs or 2 nebs), I have to tell my GP within 24hr of using it (phone), if I'm using it once a day for 3 days I need a face-to-face GP appt but if I'm waiting for an ambulance I can run them back to back (as I'm already going for further help). Of course if I feel generally rough I'll take myself in, or if my PF <33% I'll also go in despite how many nebs I've had... have also had it where the docs changed the rules slightly so so long as they know I'm bad I can have 1 every 4 hours (again only on their permission) but to go in if I need more etc

The main issue I've had is in a&e... recently had a flare up when home nebs weren't really stopping all the symptoms and were only lasting about 2(ish) hours, but the hospital only gave me another neb before sending me home (happened 2x in 4 days... on day 10 went back and got a doc that realised that nebs weren't enough). Whilst nebs can help calm your symptoms it also masks the worst of them from those with the better drugs, so ask you consultant for a letter basically saying if you're at the hospital you need something more than nebs... (mag sulphate, hydrocortisone shot, atrovent etc). Also try to highlight to the docs the fact you've had x amount of nebs which hasn't really helped which is why you're there... I've made myself a form which has all my info on it i.e., medical history, medications, allergies, prev appts/visits etc on it to hand over to them, with a handwritten part where I can explain the event if I'm at the state where I can't talk but can list when I've had meds, and PFs etc.

For me on the whole the home neb has been helpful, as it reinforces to me when I'm bad (I'm a serial offender of ventolin ODs!) , however due to the noise I'll still tend to use 10 vent at night if I'm bad (I have a spacer with a facemask to make that easier!)

So overall it's been helpful, but ask your consultant for a set of 'rules' specialised for you and a letter a&e trips so you're never wondering/worrying about where to go... as a general rule if you're feeling like crap go in regardless even if you've had home nebs (or not)!

Hope that helps

Emma

[Kelshaw2011 in reply to EmmaF91]

Hi Emma

Thank you so much for your reply will speak to my consultant on Tuesday the advice you have given has been really helpful so once again thankyou

Lesley

[Janet2017 in reply to EmmaF91]

Emma, l really benefited from your explanation.

[risabel59]

Hi there,

I also have a home nebulizer, and I also have a set of rules for using it. I can use up to 4 Ventolin nebs a day, if I am in the red zone and struggling, however as soon as start using it I have to text my doctor and make a plan. I.e. Hospital, more Prednisolone, different antibiotics, etc.

I think it's been great having one and saved a lot of doctor and hospital Visits. However, it definitely can't be used without lots of discussion with medics. I also use mine for inhaled pulmicort too. When I'm weening off a long course of oral steroids again prescribed by doctor.

R

[Kelshaw2011 in reply to risabel59]

Hi

Thankyou for your advice will definitely ask about a plan with my consultant although she knows that I am very sensible over my condition as my daughter was the same as me and I home nebuliser her for 9 years it has took my consultant 5 months to decide wether she should let me have home nebs but I think after all my admissions and the quick onset of my attacks she decided it was in my best interest as I can be having a nebuliser waiting for the ambulance and 10 puffs of ventilin do nothing for me hope you are well

Take care

[Emily-G]

Hi, I have home nebs too. I started with max of 2 in a day before going to a+e, been put up to 3 a day in last year. I have a nebuliser beside my bed and a wee portable one in my handbag. My allergies trigger my asthma quickly and I react badly most often if I am not at home. My consultant prescribed the nebules and I get repeat prescriptions from my GP. As well as really helping me recover more quickly it gives my family a lot of peace of mind.

Good luck and I hope it helps xxx

[dinadina]

I had a bad asthma flare up in June and my regular doctor prescribed a nebulizer. My asthma specialist says I don't need one -- only a rescue inhaler with a spacer. Obviously he is not in my body! Two sprays from a rescue inhaler does not equal the quality relaxation of my lungs that a nebulizer gives me. After I use a nebulizer, my breathing is much more relaxed and the soothing effect lasts a lot longer. Sometimes I am still wheezing after only using the rescue inhaler and I often need more in 3 hours or less! Luckily my GP keeps refilling my nebulizer albuterol and my asthma doctor thinks I only use the inhaler. My asthma is still out of control, but I am trying to stay one step ahead of it so I can heal. My asthma trigger was the sudden hot, very humid, days with lots of mold spores in the air!

[dinadina]

Hi. Me again. I am seeing a pulmonologist in a couple of weeks. I'm just trying to maintain until then. I'm on Symbicort and Ventolin and Albuterol Nebs.

[Kelshaw2011 in reply to dinadina]

Hi my consultant has prescribed the nebules twice a day for now but hopefully that is all I will need to take them twice daily I don't think asthma nurses understand how bad we can get but on a recent visit to my asthma nurse in hospital I took really poorly and ended up in resus she was shocked at how quickly my attack escalated now she understands how vital it is for me to have a nebuliser handy at home for whilst am waiting for the ambulance she used to think I would leave it till the last minute before seeking help but she has seen it herself hope your pulminologist sorts you out and you stay well good luck Hun

[dinadina in reply to Kelshaw2011]

thanks for the feedback. I use my nebulizer sometimes every 4-5 hours. If you need it, use it. Only thing I would advise is not using two nebs in a row. They do that in the hospital where they can keep an eye on you, because too much nebs (say 2 or 3 in a row) can cause rapid heart beat and stuff. Otherwise enjoy having it. I'm having a better day today. Only needed Ventolin.