New to here and needing help/support please

Hi. I've had asthma since being a child but has always been fairly well controlled with only occasional flair, but since beginning of Jan it has been a difficult time.

Initially I was given antibiotics for chest infection and 30 steroids for 5 days, when these finished 2 days layer I went back as still ill, so was given more antibiotics and 7 days steroids at 40mg. On the 3rd day into the course I went back to docs and was given 2 nebs and sent to hospital where I then was for 8days. My sats never went below 95 and peak flow only went as low as 280 (best 450) but was having a nebuliser of something beginning with I every 6 hrs and salbultamol nebs in between just to control wheeze/tight chest. Was really hard as all docs I saw kept saying "sats and peak flow ok" also I don't always seem to have audible wheeze even when I can't breathe properly. Was discharged on decreasing prednisolone over a few wks, told to use blue inhaler as often as needed and keep taking fostair 2puffs, 4 times a day.

I did get a bit better, and peak flow even went up to 450 on last wk of steroids, but then went back to 280 (although I've noticed peak flow doesn't always get that low even when I feel terrible) couldn't get Dr appointment despite calling every day until eventually I pushed and saw nurse who gave me a nebuliser there, back on max steroids and more antibiotics (but pretty sure didn't have infection) on day 3 steroids had to call ambulance as blue inhaler was not working (using multiple times in hr and 20 In 2 goes puffs before ambulance came) they gave me nebuliser of one beginning With I which helped a bit but still v wheezy and breathless so they took me into hospital. Sat in A&E for 12hrs having nebuliser in waiting room as no bed, finally got bed but had to wait 2 days to see specialist :( finally saw same asthma nurse as last hospital visit who said to increase fostair to 4 times a day, so explained I was still on that from last visit and he seemed confused. Hadn't had nebuliser on 24hrs by that point but using blue inhaler every hour at least (more if walked to toilet) which he said shouldn't be happening on max steroids etc. Chest wheeze much better by then but still feel like I'm breathing through a straw and v short of breath. He's given me Montelukast to try, but explained it's not immediate and may not work.

I know there are people so much worse than me who have to be ventilated and on life support so I'm grateful it's not that bad, but still really scared now and fed up as been ill for so long and never been like this before. I have 2kids under 3and no family support so scared something could happen while husband away at work (he's been around the last 2 ambulance calls) I also seem to be really sensitive to triggers which didn't affect me before (perfume,other people cigarette smoke, household cleaners) and more affected by cold air, other people pets and their excerise.

Asthma nurse said I can call him on Mon to see if I can start reducing my steroids again and he will see me in 3 wks at hospital clinic again.

Sorry for the rambling post, in just scared and fed up and don't know what to do. Any advice appreciated

15 Replies

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  • hi there, a lot of what you have mentioned is beyond my experience but I know there are many others on this site who may have had very similar. All I can suggest is to consider that your airways may be inflamed, and so may be much more sensitive than usual to otherwise innocuous substances in the air and so may take some time to recover, during that time medication will limit further inflammation. Other things to look at are if there are environments that are better or worse for your symptoms (I know it can be difficult trying to figure it out, especially when bad, because we're dealing with invisible enemies); and, have you undergone any recent heavy exertions (such as a house move/ lifting boxes for example), or even any significant dietary changes? I can't give answers as my condition is a bit of a mystery, but I have learned to be careful according to the things I've mentioned, and I also am a believer in the inflammatory issue, and try to limit wheat and to supplement with omega 3 (I like the higher nature brand).

    wishing you well, and I'm sure you'll find this forum and site helpful.

  • Thank you. I've not undergone any major changes to diet or lifestyle recently and only lifting I do is of my 7month old and 2.5 yr old, but I will bear that in mind. Yes, I also need to remember that it's going to take time for me to recover, I just don't want to go downhil again, but I will try to remember that. I've never heard about limiting Wheat so that's something I'll look into. Thank you 👍

  • Do you know about air purifiers? They may be worth a go (the non-ionisung HEPA kind).

  • Also something I'll look into and not heard about before, thanks

  • Hi. I'm exactly the same. My asthma was being controlled fine until I got a chest infection in November and ended up in hospital. Since then I just can't seem to get on top of it. I am much more sensitive to smells and I can't walk far without having to take my inhaler. The thing I would say though is that I am feeling slightly better as each day goes by so I think it is just that my body is taking a very long time to recover from the 2 asthma attacks that I had. My doctor said that after an attack your lungs are in spasm and you are having to put twice as much effort into every breath than normal. If you think of that as being the reason why it takes so long to recover then it makes sense. I've had to learn to ignore housework when I used to have ocd! Take it easy get as much rest as you can (I know that's hard with children!) and don't rush to get back to your old self. You will feel better soon I'm sure.

  • Thank you so much much

  • As far as I know peak flow isn't always low if it's allergic asthma. A FENO test is needed. Google it, better than me explaining. You take good care xx

  • Never heard about that test. I'll look into it. Thank you

  • Hi hope your feeling better soon am new to asthma myself I was rushed in to icu in November with asthma didn't know I had but under control at the minute I was prescribed montelukast tablets I think they work haven't really coughed since I've been on them am also in fostair ask for allergy test mine come back am ellergic to dust am also sensitive to cleaning products perfumes good luck

  • Thank you. Asthma UK have suggested I ask for Allergy testing but when I mentioned this in hospital they were not keen. I'll try my gp, but they've not been great to be honest

  • I've never been admitted to hospital (touch wood). However, I have been in A&E 4 times since September, twice by ambulance on a nebuliser. I see a consultant at the hospital who is currently sending me for tests to, a; confirm that I have asthma and b; to find out what's triggering it and making it worse. I'm off for a CPET test this afternoon.

    I'm currently on Fostair 100/6 2 puffs twice a day, Montelukast, Loratadine and Ventolin. I also have a rescue pack of Prednisolone to keep at home. I was controlled until I came to uni 2 and a half years ago and had never been in A&E until my first year of uni.

    I had to call in sick to work for the first time just over a week ago a short I had spent the whole night in A&E for my boss and supervisors to ask me if I'm sure it's not anxiety as I, like you Ali don't wheeze. This also makes the doctors and nurses not listen as much as they probably should.

  • Yes, I have had a few people suggesting it's anxiety also. I don't deny I get anxious when I'm really struggling to breathe, but I try to be mindful of it and I don't think they can understand unless they have felt like that too. I hope u gets yours under control again soon

  • Your experience very much mirrors my own this past week. The emergency responders are great, but once you're in 'the system' things get less clear-cut. I've been in A&E and then to the GP, and have found that no matter how ill you feel, they tend to look at the numbers and make judgments based on peak flow and SATS. On Sunday night in A&E the Dr asked me to do a peak flow test, so I blew with all my might, hit 450, and nearly fainted. 'That's good' said he - as the room spun around me and I coughed fit to burst. I was so glad he was pleased with my effort! But by then I'd emptied several Ventolin cans, been nebulised 4 times in as many hours, and started on the Prednisolone. Of course my numbers were going to be better than when the paramedic saw me, at home a few hours earlier, with SATS which were hovering around 92, and peak flow sub-250! Similar experience yesterday at the GP, me gasping but managing to blow 450-500, tight but not wheezing. 'Your numbers are quite good so I don't understand why you're not breathing so well' said the nurse 'so I'll ask a Dr to see you'. Maybe the cocktail of Ventolin, nebulisers, steroids and antibiotics were colouring the picture a bit?

    Have you had a chest X-ray? I did on Sunday night (third one in under two months) and in A&E the Dr said it was 'normal'. When I saw the GP yesterday I was told that they needed to review me because it had in fact showed a significant change from the previous one of six weeks before, with an area of consolidation in the left lung. It doesn't inspire too much confidence in the A&E Dr!

    At the end of your post you ask for advice. What I've learned in over 50 years of having asthma is that there are as many opinions as there are medicos, and that you have to become your own expert. Never assume in any one consultation or examination that the Dr or nurse has actually read any of your previous notes. Asthma is different for everyone, and just because you happen to blow 450 once does not mean that you're cured and feeling fine. Try not to worry - it's a waste of emotional effort and it drains you. Asthma attacks do pass, periods of feeling ill that last weeks or even months are normal and do eventually settle down. Asthma is a horrible, frightening business. Unless they've actually had an attack I don't think even the most sympathetic Dr or nurse can really understand how it actually feels, so don't be too surprised if you feel they don't seem to take you as seriously as you'd hope. I've been very ill with Asthma in all sorts of places at different times, at home, at work, in hotels, even once at Liverpool airport. It's surprising how complete strangers are brilliant in those circumstances. I made myself a little card that says 'I have Asthma. If I am so breathless as to be unable to speak please call an ambulance'. I've never had to use it, but it is good to know that it's there!

    Finally, don't believe everything you read on the internet, and don't get hung up on the numbers! Get you medical advice from real live medicos, listen to everything you're told, think about about how you feel, but then make up your own mind. Never be afraid to keep asking questions!

    Good luck - you'll be fine!

  • Thank you for sharing your experiences, I don't feel so alone now. Yes, each Dr I saw in hospital gave a different opinion and some were more/less sympathetic than others. I did have to correct some of them as to medications and previous advice as they hadn't read notes properly. I also just had to get my husband to speak to the ward as my discharge letter (which I didn't think to check in hospital) stated that I had no nebulisers! They are apparently going to correct it.. Thanks again. I'll keep my chin up and hope for the best

  • Last year, when the shadow on my lung was first noticed, I was told during a spell in hospital that I needed a CT scan. It was written in my discharge letter for the GP to arrange. Hearing nothing I went to see the GP who said that CT scans were organized by the hospital. So I rang the hospital, and then eventually actually went back up to the ward and asked at the reception for someone please to sort out my CT scan! In the end I had to ring the GP Practice Manager and get him to organise the scan. I was pinging back and forth between Hospital and GP for about a fortnight, trying to get the scan I was told I needed because there was a suspicious shadow on a chest X-ray. To say the whole experience gave me the collywobbles would be an understatement. So don't be afraid to question the medicos. They do mean well, but to them it's just another day at the office, whereas to you and me, it's all about the one set of lungs and, for that matter, the one and only life we have! More than anything, don't let Asthma wear you down, and don't be fobbed off. I always try to stay calm and polite because I know that NHS staff do suffer no end of verbal abuse from grumpy patients. But I think the unwritten rule is that it's assumed that if a patient doesn't speak up then all must be well. Good luck - you'll be fine!

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