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British Lung Foundation
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Advice please.

Hi again.

I’m not sure how to go about how to find out what is giving me asthma. I think I’m going to be discharged from the hospital and am still waking up with difficulties breathing which I did mention to the Dr. In fact I don’t think my breathing is right at all since the pneumonia. He is going to send me to someone to teach me how to breathe properly but I don’t see how you can change that at night when you’re asleep. He also thought it might be something new in my bedroom but there’s nothing. I was keeping my washing capsules in my wardrobe but I moved that yesterday to the kitchen and woke up even worse this morning. It’s only been like it since my pneumonia and it’s after I’ve been to sleep at night. I’m afraid I’m going to pass out again because I’m not breathing properly. My peak flow dropped to 250 this morning probably lower a little while before. When I’ve been up for a couple of hours it goes up to 400 to 450 which is about my normal. I have also coughed up quite a bit of clear mucus this morning. My asthma has always been controlled before and I only knew I had it if I had a cold. I now know I’ve got it on waking every day. Sitting up to sleep makes no difference although I do sleep on two pillows.

Has anyone got any magic solutions as I’m stuck as what to do. It’s quite scary when I wake first thing and its taken an hour and a half this morning to get my breathing back on track.

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Hi Mavary, I do feel you need more tests to see why you are like this. Your GP could ensure these are done by the hospital so they shouldn’t be discharging you.

Wishing you well. Xxxx

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Hi Sassy and thanks! I think because I was still taking the steroids and was so well on them he thought there was no need to go back. It’s not for definite as he was going to discuss my case with his colleagues last Thursday but it sounded as if I won’t be going back. To be honest I don’t really want to go back but I do want to get rid of this breathlessness first thing in the morning. I never know what I’m going to wake up too. It was definitely worse this morning. When I had to do the lung function test I had to wait between doing it as I couldn’t breathe properly. I did it three times and on the third time he stopped me as my breathing was constricted, yet when I went to see the Dr he said my breathing was fine in fact above average. I’m wondering who’s notes he had. It’s all very odd.

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Hi Sassy.

Hope you’re ok.

After sending my message I received a letter from the hospital this morning. When I last saw the Dr he seemed almost convinced I would be discharged although I told him I had breathing difficulties on waking. He must have gone away and thought about it because he now wants me to go back in four months time which will be in November. They are going to do another X Ray to check the fibrosis I have. When I was discharged he told me to make an appointment for a blood test to check eosinophils and IgE which were both high which was what had suggested I had a major asthma attack. My appointment for that is in August but I’m going to try and get it done before that as I’m quite breathless again. I just don’t want to end up back in hospital if I can prevent it. At the moment I don’t feel I’m breathing properly in the day time as well as first thing in the morning which is why I texted the group in the first place. I was definitely better on the steroids but I wouldn’t want them again. I would end up the size of a house as I couldn’t stop eating.

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Hi Mavary, I’m glad the doctor had a rethink and I wish you all the very best in the future.

Hypercat has raised some very good points so hope they help too. Take care xxxxxxx

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Thank youSassyxxxxx

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Hi have you been tested for Allergies!

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I was when they first discovered I had asthma but that was years ago. I can’t even remember if they said I had allergies. If I had I’ve gotten away with it for a long time.

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Mavary - what type of asthma do you have? If it is adult onset Intrinsic Asthma, this does not always have obvious triggers. My OH has this type and it is severe. Efforts to reduce potential allergens have proved fruitless. Try to find out from the doctor if you have extrinsic asthma and if so what your triggers are.

Regarding steroids, you don’t want your lungs to be damaged by inflammation and these will dampen it down. They have side effects so you have to balance the two outcomes and see which is most important to you.

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Hi Bella.

I’m not sure what this new thing is but I’ve had asthma mildly since a child. I had a bad attack quite a few years ago when I worked with sheepskin. Otherwise I only know I’ve got it if I get a cold. Whatever this new thing is it’s to do with what they found in my blood. It’s eosinophils and IeG. I will look up extrinsic asthma who knows it could be that. I just don’t know. Thank you for your reply.

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Extrinsic asthma is atopic ie due to an allergen such as dust mite, cat hair etc. Intrinsic asthma is adult onset with no clear trigger factor. You have eosinophilic asthma and from what I have read, it is like intrinsic asthma i.e. there are no clear triggers. There is something about this here:

asthma.org.uk/get-involved/...

The only reason I mention it is because several of the posts refer to trying to eliminate dust mite etc and I wonder if this is likely to give you more stress and work. I’ve been there myself during the years I have been looking after my OH and it was all a complete waste of time etc. His asthma was unaffected by all the changes I made, including stripping out the carpet. He now has a cosy, warm bedroom with a carpet and curtains. His allergy tests did not show dust mite allergy, only that he is allergic to cats.

If you have had tests and been identified as having dust mite allergy then it makes sense to follow the advice on trying to reduce the burden but you will never eliminate them totally. Otherwise, try not to stress yourself about it. You have enough to cope with.

With some types of asthma you are reliant on drugs and from what I’ve read there are new, better ones coming along. At a guess, it sounds like you need better mucous clearance in the morning. Maybe you could discuss this with your respiratory specialist team.

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That sounds great. The Dr asked if I’ve been exposed to anything different and I told him No! I have got as far as taking the washing powder out of the bottom of my wardrobe and I seriously thought of the crinkly sheets and pillows. Hopefully as I say it may go away. When I was on the steroids my blood went back to normal so it may be that it will all be ok. I think I’m just hoping! I’ve got a few mild allergies but nothing major. The Dr thought it could also be caused by a virus.

I liked the sound of the new drug coming along for eosinophilia but as usual Nice are not going to let it through. Let’s hope I won’t need it anyway.

I’m glad you had your curtains and carpet replaced as that’s what makes a home cosy. I couldn’t imagine living with bare floors. I remember when I was a child and we had Lino on the floor. One small fire in the lounge to heat the whole house. In the winter it was so cold going to bed. I would hate to go back to that.

Thanks for your information. Hope you OH is doing ok.

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Thank you. He is stable at the moment but is on a lot of treatment including steroids. He has been dependent on them for years. He also takes Azithromycin 250mg daily rather than three times a week. His bronchodilators are Salbutamol and Atrovent nebules.

We concentrate heavily on mucous clearance by various methods in an effort to prevent infection and it is helping matters.

I hope that you manage to get on top of this and soon feel better.

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Good to know he’s stable. I expect you have to watch he doesn’t get into contact with colds and coughs don’t you? You make sure you look after you too.

I’m not going back until November unless anything untowards happens in the meantime. I feel fine in myself now. Just feel my breathing is not quite right. Maybe this teaching me to breathe properly will help. I agreed to go because it may be that I’m not breathing how I should. I’ve only noticed it since having the pneumonia though.

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Forgot to say that probably the commonest and most troublesome trigger in asthma and COPD is infection. Prevention is desirable but not always possible.

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Thanks Bella.

Hope fully I won’t get any more infections like pneumonia or whatever. I just couldn’t believe I had it. I’m not usually the sort of person to get things. I’ve been having probiotic yogurts in the hope that it will put some good bacteria into me. I’ve also change my way of eating but I’ve still got a bad habit of sugar things. I know I shouldn’t but it’s like an addiction.

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Hi Mavary I am going to point out some basics that I presume you are doing but if not it could be worth giving them a try.

First of all dust mites can be a major trigger so you need to wash all your bedding and night clothes in at least 60 degrees to kill them. Pillows are a major collector of mites so either wash them regularly or change them every 6 months. It could be worthwhile putting anti mite covers over your pillows and mattress too.

I hope you find some answers. x

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Hi Hypercat.

Hope you’re doing ok.

I will bear that in mind. I will be changing the sheets tomorrow so will wash it all on 60 degrees. I’ve got a mattress protector and pillow protectors which I changed a couple of weeks ago but I can’t wash that in 60 degrees. I will hoover it though. I will also get new pillows. I’ve been thinking about it anyway. When my Husband was here we used to have feather pillows but I changed that about two or three years ago otherwise I could have blamed them. Have you any idea where I could get anti mite covers too? X

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Amazon.

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Thank you Daeceydoo.

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Yeah Amazon. Feather pillows are definitely a no no! No way never. x

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All this talk about dust mite allergy in asthma is relevent in people (mostly children) who have been properly diagnosed with it. Adult onset or intrinsic asthma tends not to have obvious trigger factors, least of all dust mite.

Bedroom hygiene is important but trying to control dust mite can be like plaiting fog and could well be fruitless if the sufferer is not allergic to dust mite anyway. As a carer for someone with non allergic asthma, I have been down the road of trying valiantly to reduce dust mite but it was a waste of effort, money and time.

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Dust mites are a major trigger for sufferers of lung problems. As can pets, aerosols, cleaning products etc. Of course not everyone gets triggered by everything as I don't by pets, or most aerosols. But many do.

It is well worth while to consider dust mites as it might help. There are no guarantees of course but if it could help why not try my suggestions? I am not saying rip all the carpets up or replace curtains with blinds as my steps are very simple and easy.

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Dust mites can certainly be problematic for people with asthma. I am only mentioning that it is not relevant to all asthma sufferers. Dust mite allergy is not hard to diagnose and should be done properly by hospital staff.

My OH has severe asthma and bronchiectasis but has only two allergies - cats and penicillin. If he lived in a hermetically sealed bubble with no dust mites he would still have asthma. It’s good to identify triggers such as aerosols, smoke, pets etc because you can avoid them but the dust mite is far more difficult to eliminate and avoid. A lot of effort is needed and it might be in vain if the sufferer is not allergic to them anyway.

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No you can never eliminate dust mites completely but cutting them down is easy by following the steps I have outlined. This can help. I have asthma and copd and am intolerant of dust mites which make me cough. Everyone with a lung disease can potentially be intolerant and I don't understand how you can say they are not a trigger. I am no way way saying that all dust mites can be eliminated nor that asthma sufferers wouldn't have asthma without them. I am saying they can affect people and make their symptoms worse.

I don't know which country you are in but in the UK the NHS won't usually pay for allergy testing so it would have to be private. I don't see the point when it is easy to find out yourself.

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Yes, dust mites can be a trigger but all I am saying is that this is not the case with all asthma and COPD sufferers. I am not disagreeing with you.

My point is that trying to reduce the dust mite burden can involve a lot of effort, expense and stress. I know this because I have done it myself on many, many occasions, mainly because I was desperate to control his asthma. I couldn’t because it wasn’t under my control and he isn’t allergic to the dust mite anyway. I just fear that people are frantically trying to clean everything in order to eradicate the dust mite and getting stressed by it. Asthma is bad enough without adding this to it. However, it is worth the effort IF the person knows they are allergic to the dust mite. You are one of those people so yes, continue with your preventative measures if they help.

The NHS will perform allergy tests but I do not know the current criteria/guidelines.

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Not sure how washing all bedding in 60% and changing (or washing) pillows every 6 months 'can involve a lot of effort, expense and stress'? This is all I said. I would expect the poster has the nous to work out if this helps or not after a while.. I am not saying 'frantically clean everything in order to eradicate the dust mites and get stressed by it. You are saying this.

I also didn't say the NHS wouldn't perform allergy tests! I said in the UK the NHS won't usually pay for allergy testing.

Mavary has said she will try these simple steps and I was trying to help her with my reply which is the object of my response. It sounds like you went a lot further with it but that is what you did and not what I was suggesting Mavary did.

This is getting a bit silly now. I have said what I meant and meant what I say and if you want to add other words it is nothing to do with me or my responses.

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OK - point taken. Keep well. :-)

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At the moment I’m listening to everyone. You all have valid points. I’m not really sure of anything so have to wait until I get a proper diagnosis.

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My bloods have shown high levels of eosinophils and IeG. They did go down with the steroids but I’m wondering if they’re going back up.

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Sounds like allergies are playing up as well..

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Should you feel too breathless do call emergency they should help you out xx

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It all sounds very complicated. I did read about it and the bit I read was quite scary. It did however go down with the steroids so I’m hoping it’s not anything permanent. If I’m still breathless tomorrow morning and Monday morning I will be going back to see the Dr. Thank you for all the information. I certainly won’t leave it if it gets bad. Xx

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Steroids certainly help me to breathe better. There is a down side to them.

How about oxygen? Have doctors considered it?

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I don’t think I need oxygen. In fact I don’t think they’re too worried as like I said I thought he was going to discharge me. I was hoping he would. It’s only when I wake up my oxygen is low. My peak flow was 280 to 300 this morning which was better than the 250 yesterday. I can cope with the higher one but feel I’m struggling a bit on 250. I just don’t seem to be able to get a deep enough breath in the morning. I’m a bit worried about having the interstitial bit. I only knew of PF and IPF that is interstitial I didn’t realise there were other types of interstitial too. I wonder? does all interstitial progress too? That’s the scary bit after my Husband having IPF.

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Well Mavary, I think your Asthma is perhaps not under control and may need more investigation, maybe a change of inhaler. Sounds simple sorry but I have read some more of your replies and realise things are now being addressed, so hope you start to feel a little better soon xx

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Hi Katie.

How are you doing now? I hope you’ve got a bit of help. You were struggling last time we spoke. I was certainly glad of mine when I couldn’t do it. When I was on the steroids I found my housework so easy. When I came off them it took me a lot longer to do it. I don’t like taking them though. They really upset my tummy.

I’m not quite sure what’s going on with me yet. It’s a bit worrying. I’m sure it will all work out in the end. Xx

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Hi Mavary, I do have help twice a day with personal hygiene. My arm is getting more mobile, still bruised & painfull, but can do some of the little things again. Kitchen tap went haywire today, managed to fix it with screwdriver in my left hand, why do these things happen when your indisposed already :) Off to hospital tommorrow to fracture clinic and physio on Wednesday. Both in that uncertain what will happen next at the moment it seems, But as we know it will probably all come together given time. Let you know how things go in a few days.

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Glad to know you are improving as can do a little. It’s awful to know something needs doing but know you’re not able. I think my hand has come out in sympathy. Where I broke it has been a bit tender today. I think it must be the weather as I very rarely even think about it. I have had it aching before but not for quite a while. Probably a bit of arthritis which happens with broken bones. I will put some voltarol on when I go to bed. That should sort it. I think we both need a good sort out.

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Good morning, yes sadly broken bones always leave some lasting niggles, and are prone to earlier arthritis. thought I should get the voltarol out for my thumbs as I am struggling to use my splint on the injured arm. My careworker had a bad knee yesterday from past injury, maybe its the damp after all the sun, must go as I have hospital today. Enjoy your day hope the voltarol worked xx

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It worked well Katie. It’s better this morning. Let me know how you get on at the hospital.

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Hi Mavary, discharged by doctor he feels I have improved well not to do any heavy lifting for three weeks as physio can take over now to improve the mobility in the joint. Trying to lower the care but not stop it in case it does not work. So another step forward, fingers crossed we keep going forward. Bye for now xx

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Wow! That’s good news. Shows you’re doing all the right things. Are you sure you need to lower your care so soon? Just go careful and don’t do too much. XX

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Good morning , Well first night over , not much sleep due to pain but now its get on with things. Even I'm feeling fed up today, I can't do anything these days without pain its frustrating get fed up of putting on a smile. Just have to be grateful , it could be worse as you say take things slowly . Survival is the word.

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It’s rotten to be in pain all the time. It’s going to take a long time before it doesn’t hurt. It will fade gradually and before you know it you will be thinking that youve not had pain that day. I only broke a small bone in my hand and that hurt like mad so I’m sure what you’ve done is so much worse. I’ve got a bad back now and am in a lot of pain. I don’t know what I’ve done but it hurts to move. I think it’s muscular. I’ve done it a few times. I won’t go to the Dr because there’s not a lot they can do. They gave me tramadol once and I couldn’t get up until twelve o clock midday. The paracetamol doesn’t touch it. I’ve got to go to the Supermarket I’m just hoping I can drive. I know it’s going to hurt for a few days but it will go.

We’ve just got to take one day at a time. Take care.

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Thank you Mavary xx

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You need an allergy test to find out what would cause your problems. Use anti allergy sheets and pillows. Keep in touch with your doctor over the use and kind of inhalers that will suit you. Belong to the local RESP team (through your GP) who will be very sympathetic and help you. Good luck .

Dan

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Thank you Dan. The hospital has already changed my inhaler from Qvar to Fostair so I think they may be on the ball. I will bear what you’ve said in mind. I will probably be going to see the Dr this week coming so I’ll see what they’ve got to say.

Mavis.

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