Nebulizer confusion!

I'm waiting on delivery of a loan nebulizer from my respiratory nurse as my cons has finally realized the meds just aren't having enough of an impact.

I'm a bit concerned though that I'm kind if just being left ti gey in with things but u know being given a home neb is normally meant to come with strick guidelines.

The respiratory nurse has arrranged for my nebulizer but when I asked about using it, cleaning and maintenance she just said there are instructions in the lid and the 2.5 salbutamol nebules from the gp (following cons instructions) say as and when needed.....

I'm sure I'm meant to get more guidance than this aren't i?!

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Sorry to hear that things are rough for you at the mo. Hope the neb improves things.

Concerning the neb maintenance would you maybe get instructions/a manual from the people when they bring the neb? Thats what I did get.

For the actual med side I think you should hassle the cons/resp nurse/gp for clearer instructions as each person is different. Personally I have 2-4 nebs/day but like I said it very personal and can also vary with time etc.

Hope things get sorted out satisfactorally!

Rose xx

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I really would hope they have more guidance than that. It would feel pretty daunting to me if they just sort of handed it over and went ""well, there you go"". Is it worth trying to phone and talk to cons and say that you need a bit more info than the nurse gave you to feel confident about having a neb at home and when they think that you should head to A&E.

All the best with it Angelica, I really hope it'll make things easier for you. XX

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You should definitely talk to your cons.

I think the reason they don't want random people to have nebulizers at home, is that the rules are very individual and depend on each circumstance. For those who don't have an ongoing working relationship with a doctor who knows them, it could easily be misused.

I was first prescribed a nebulizer two months ago by an urgent care doctor with strict instructions that if I needed it more than every four hours I should go to urgent care for observation. Then doctor #2 who sees me when my regular doctor is on holiday lowered it to two hours, but only until this exacerbation was under control.

My own doctor does not have a firm rule at this point. Originally, he would have liked me to follow the four hour rule, but I would have been living at urgent care if I did. Eventually, when I pointed this out coupled with my history of symptoms not turning into life threatening events and that observation merely based on neb use less than four hours was redundant, we agreed that frequent use would be a signal to call in to discuss medication change.

As for when to seek out immediate help, his answer was ""use your judgment"". Having given this a lot of thought, for me, this means

(a) any signs of a very severe attack (turning blue, peak flow below 50%, crazy heart rate) that wouldn't normally be treated by neb alone or should have emergency resources other than a nebulizer close at hand.

(b) any level of severity of symptoms I haven't seen before and don't feel I have the experience to judge where things are going.

(c) if I feel I am working so hard to breathe despite nebs every 1.5-2 hours that I am tiring of trying or it hurts more and more to breathe. At that point, I want to be close to help if I need it so I should go in.

(d) my peak flow is in the yellow zone and lower after two hours than it was before the last neb and this continues after 2 or 3 tries, especially if it reaches the red zone (60% personal best) - that probably means I need stronger medicine than I have at home or am competent to adjust on my own. I do have pred at home, but my doctor calls the shots on when to go up.

The above assumes that attacks progress slowly with me and I have time to monitor the situation. I suspect the rules would be VERY different if I ever showed evidence of declining rapidly to a life threatening point.

So again - definitely discuss with your cons because it is very individual and tuned to your particular pattern of asthma.

Note: Hmmm. I haven't actually spelled out this list in full to my doctor since he said ""use your judgment"" a few weeks ago. I probably should. Last week, we did discuss more broadly what to do ""if I ever felt I was in over my head"" if it was out of hours and I couldn't reach him for advice or a doctor referral to urgent care. ""in over my head"" was my short-hand way of saying b-d.

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Thank you everyone, I will ring my cons.

I kind of knew it wasn't right but you've made me realize that the part that I need clarification on is the when to seek help bit as I can go downhill in second at times (but not always and for those attacks I need to know whether to even attempt nebbing or just call 999!).

Thanks for focusing my thoughts

[KateMoss]

I would get clarification on how many nebs you are allowed etc.

If you are going off big time you can probably neb while waiting for an ambulance.

I am brittle and if 2 nebs in a row don't work I am dialling 999, nebbing and getting my epipen ready.

Kate

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Hey u!!

Definatly agree with all else.

With regards to the actual maintenance if the machine, because you are getting it from the hospital, it should b tested yearly by the hospital team and all parts as in filters, tubing, chambers, mouthpieces etc should be provided by the hospital team as well.

The only thing your gp should do is provide you with the script to get ur salbutamol. Everything else is down to the hospital that loan u the machine.

Hope this now gives u a bit of freedom free hospital time!!

.xxx