During the beginning of the covid pandemic I had several saver asthma attacks leading me to be sent to hospital, because I was caughing with them putting a mask on my during and just after an attack I was take to the covid ward. Treated and sent home. My asthma is bad and I usually need several nebuliser over the few days after while the steroids kick in. I spoke to the gp and we descussed the risks of being exposed to covid and my asthma and he said that if I get a nebuliser and gave me a list of suitable ones that they would provide me the medication. I was told to only use it when needed and if I used it more than once I would need to go to hospital. This was fine and I only use it when I need and speak to the gp about it.
I then spoke to my asthma specialist a breathing difficulty doctor who was furious that I had a nebuliser and didn't list to me explaining the resosns. He kept telling me that I was now more likely to die at home and the risk to life is higher. In the same conversation I asked if she stop using it and he said that he won't stop me using it now I have it? When I panicked now asked if I was using it correctly and explaine how I was using it and that I was contacting doctors because I was starting my emergency steroids and using a nebuliser. He said well I won't say its right because you shouldn't be using one. He then said that he couldn't assess my breathing over the phone I would make me an appointment.
I am now very cross and confused because he is the only doctor who doesn't agree I should be on a nebuliser. I didn't prescribe the medication myself. Every time I visit the AnE they ask why I don't have one at home. I am also cross that he was so annoyed he didn't advise me at all he didn't make anything clear.
As I prepare to confront him at my apartment with questions and to tell him is attitude was rude and he didn't help me at all. I want to know if anyone else has experienced this issue with doctors fighting and you being stuck in the middle unsure what to do. I am now scared to use the nebuliser and at the same time thinking I don't want to be on a covid ward. Help and advice appreciated thanks.
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Lindsay717
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It’s just awful isn’t it? My story is very similar to yours but no-one has allowed me to have the prescription for a nebuliser at home yet. Like you I have had the same mixed messages.
All I can say is that I fully empathise, but take notice of your body and don’t leave it too late to get extra help. One of the asthma nurses I speak to keeps telling me “you can’t mess about with asthma you know!”
These are such difficult times to be living with our condition.
Today I am sat on the sofa, scribbling notes to communicate with my family, puffing away on my inhalers, avoiding going to A and E again. I was there on Wednesday for the day.
Sending best wishes and positive vibes! Hope we improve soon.xxx
Hi MMBJI, sorry to read you're having a rough time at the moment. I know nobody likes going to hospital but if you're at the point where you're needing to pass notes to your family that suggests that you can't speak in sentences and really should be in hospital!
As you've said yourself you shouldn't mess around with asthma or risk leaving things too late so please seek help for your symptoms!
Thankyou lovely people, I was seen again last night, I am being as sensible as I can- drs are leaving it up to me to judge when to go for nebulisers . Tough times! Xx
Thanks it feels better knowing that you are not the only one. I am for the moment going to do as I have been with the gp and listen to the ones who perscibed the medication. Like I said I take emergency steroids and use the nebuliser the same way use it and start steroids and speak to the gp. Having a nebuliser at home won't stop me going to hospital if I need to if I ever needed it more than once I would panic and get help it is only being used as a step like the steroids to keep me away if possible so far I have used it a few time and been to the hospital anyway or seen a gp. Asthma is scary and I know first hand how quick it can turn I wouldn't risk it if I was not right and would go straight to the hospital if I needed. I understand that they don't want you sitting at home on a nebuliser getting worse without realising but they specialist should have clarified the way I'm using it. My specialist is like Boris Johnson not very clear 😂told me he wasn't going to stop me using it but won't agree I'm using it correctly because I shouldn't have it. Thanks again
Unfortunately what your consultant is saying is kind of true - there are better ways to say it than he did but, in asthma, they're not a favoured thing because people can use them when unwell and it masks how unwell they are so that, by the time they seek help, they're in a worse state than they realise.
However, it sounds like you have had a sensible discussion with your GP who has set rules for using it which you're sticking to so it's unlikely that, in your case, one neb at home and then hospital if it's not settled is going to make you "more likely to die at home".
When doctors, especially those "in charge", don't listen it's really hard. I can only think that maybe he'd take on board the reasoning if you wrote it down - eg this is why my GP sanctioned a nebuliser, and these are my rules for using it which I have stuck to.
Yes I understand this but I asked if I should stop using it and he said no. He said that he would not take it away and that I should be careful. But then didn't clarify what that was so it made no sense to me if the asthma consultant had told me not to use it and go to hospital I would have listen but he didn't. He said that now I have one he wasn't going to stop me using it but then didn't advice me exactly how to use it because I shouldn't have one. I have has saver asthma since I was 14 and when I have attacks I need to go to hospital for nebuliser. What makes no sense was he said if you go to hospital you are being watched but that's not true either because on several occasions I have been give lots of nebulisers and then sent home on steroids. So how is that any different from me taking 1 nebuliser and emergency steroids the specialist gave me at home? Surley give me lots and sending me home is dangerous. So like I said I'm more confused now and have a specialist taling in riddles and not giving me specific instructions.
Oh I understand - it's so confusing and unhelpful. In your situation I think what your GP decided, in conjunction with you, is safe and you haven't done anything wrong. It would have been more helpful if your consultant had said hmm I don't agree with that but let's carry on as it's happened. Rather than having a strop at you and being contradictory.
Hi I thinks is concerned but said/sounded wrong. Speak to respiratory nurse and have a rescue plan made up. I do and my rule from my consultant is. If I need back to back neb I call 999
Hi Lindsay. I have an at home nebuliser and it has saved my life more than once. Particularly in this COVID period when a trip to A&E may be a risk. The trick is knowing that using it means you are not in control and following up with your doctor even if you feel better! That is probably what your doctor is worried about; lack of follow up. 🙂
I agree that monitoring of its use/follow up is important (which you have in place) but doctors wouldn't want people with asthma not going to a&e if they need it "because of covid". Having a nebuliser at home might give some relief but it won't actually treat the underlying issues so could actually be dangerous if used to avoid hospital.
The way your GP has set up your rules would be different though as it's for the odd boost of relief and if that doesn't work you go to hospital - so that could be something to emphasise to him.
I'm now convinced that doctors don't get training in communication. Some are natural communicators and very aware that how they say something is as important as what they say. Others, not so much. The "don't panic Mr Mainwaring" doesn't really help.
The nebuliser at home thing is a "no no" for some doctors but as long as the instruction is clear and it's part of an active asthma plan, it should be safe - it's about trusting the patient. The GP probably knows the patient well, having looked after them for some time and I would expect them to be able to assess the patient's ability to stick to their asthma plan and to present to A&E at the appropriate time, beforethings get too dire.
Lindsay, stick with using your nebuliser (your GP trusts you) and use A&E whenever a dose of nebs don't give you the relief expected. As we're going into the 2nd wave of covid, it's important that we're not too afraid to go to A&E. If in doubt, go to A&E.
Hi Lindsay717 I have a home nebuliser. My GP said it was a good idea and he would prescribe the meds. I did first check with hospital Clinical Respiratory Nurse Specialist (CRNS) first before purchase who agreed. She wrote to my GP to ask that he prescribe the meds. I'm allowed to use it as emergency or as an order, so the latter would be if I've phoned the surgery unwell and been told to use it 4 x a day.
Your consultant was not eloquent with his speech and manor. Putting fear in you is not the way to do things. You've been told how and when to use it.
Mine is emergency and only that, it's not on my asthma plan. Although it's all in my notes I have one and how to use it.
Thanks everyone. I have been told by the gp and the asthma nurses at the doctors how and when to use it. I use it with my emergency steroids as relief while the steroids kick in. As I said before I have used it and ended up at the hospital anyway but have also used it and once the steroids kick in I don't need it and my asthma clears up. I would never use it twice in a day, I would always call or seak emergency medical advice because my asthma can change quickly. Even though my perscription says I can use up to 4 times a day I will always make sure I see a doctor or visit the hospital. I think the gp does understand me and knows that I don't take any chance, I take all the medication I am supposed and go to the hospital when I need to. I do call the gp all the time over my asthma and the gp doctors will listen and explain things clearly.
It's hard to believe it yourself when a doctor has made you feel like they have, but please know you're doing the right thing and sound really sensible to me.
I have a home nebuliser but can go years without needing to use it. It is there for those occasions when it is required. You are the one who knows how your lungs are going. Check up how much ventolin is in one nebule so that you know what you are taking - although not all of the dose goes into your lungs. Also check up possible side-effects.
You are in charge of your body and it is good that the GP has given you that ability.
I have severe asthma and asked if I could have a nebuliser at home and my asthma’s consultant said no straight away saying it could underly my condition and cause me to have a bad asthma attack so always listen to your asthma consultant not your gp
My asthma consultant when I asked if I should stop using it said no he said I shouldn't stop using it now I have one but didn't clarify if I was using it right. That's what my issue was.
It has to be a partnership working in collaboration with your consultant. It sounds like the consultant sees you the least of all the professionals. Perhaps have a chat with the Asthma UK nurses who are fantastic 0300 222 5800 Monday - Friday 9am until 5pm
I was given a nebuliser and I was made to promise by the consultant, if I had to use it, I had to get medical advice immediately. As you know, and other people have said, many asthmatics overuse their blue inhalers/nebulisers. When a doctor asks about It, I reassure them that if I have to use it that I always get medical advice. I also reassure them that I know what my asthma plan is.
Remember how many asthmatics lung diseases they see and many people don't manage their condition.
That said it is no help to anyone when a consultant freaks out and gives a different opinion or unclear advice.
You use your nebuliser if it helps, it's salbutamol. Get help if you need to use it. That would be my plan.
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