Terrified

[Amyloulou]

I've had asthma for about 5 years now and was doing really well only ever had one attack which was brought on by a chest infection. This all changed about 3 weeks ago when I had my first hospital admission for asthma attack and had to stay in hospital for 3 days on nebulisers and steroids. I was discharged and thought I was getting better until the Tuesday when I had a further severe asthma attack and spent 6 days in hospital and was put on nebs and still on steroids they gave me montelukast and said I would be on them for the rest of my life. The doctors at the hospital said that I would defo need further treatment in hospital which scares me half to death. I'm now weening myself off steroids and taking new inhalers. Is this the new normal I'm just going to get used too? I feel so helpless and I'm getting to the point where I'm scared to leave the house in case of having a further attack is there anyone that has similar experiences as me and how they dealt with it. Thanks in advance

[QuietChest]

Sorry to hear you have had a rotten time. Yes you might end up back in hospital but hopefully not soon. We all have different ways of coping but a good start would be to have a clear, stepped approach

asthma plan. The asthma nurse at your GP Practice should be able to help phone the asthma uk nurses

or

[Amyloulou in reply to QuietChest]

Thank you I'm at the nurses at hospital next week and hopefully start to feel better the support from my gp asthma nurse is really rubbish so I don't even bother much with her x

[QuietChest in reply to Amyloulou]

At least you've got an appointment. My asthma is complex so I'm looked after in secondary care, but our Practice nurse is nice and looks after my son. It's hard when you need support and don't like the person who is supposed to be that support. Asthma UK nurses fantastic and will listen. You can call them even if seeing hospital nurse too.

[Amyloulou in reply to QuietChest]

Thank you I might give it ago just for abit of extra support that I'm not getting off my gp nurse it's really nice to hear that I'm not alone I really appreciate it x

[EmmaF91 Community Ambassador]

Hi

Sorry to hear that you're having a rough time of it lately!

First things first, there are a lot of factors involved in suggesting whether an aggravation of asthma is here to stay; i.e. age of onset, triggers, family history, etc etc, however most of the medical community view asthma as something that can worsen and improve over time and thus has a sliding scale of when to change/increase/decrease meds. Some people get aggravated in the summer and have to increase/take new meds to regain control however that could only be for one year and then they return to their 'baseline', others chronically worsen over a longer period of time, spend years at the severe end of the spectrum under specialist management, then slowly improve. Yet others only ever seem to worsen and never seem to improve. Personally I was given a blue inhaler at 13, had my first attack at 19, had a bad year aged 21, then was fine (remitted) until I was 24 then full blown severe/uncontrolled asthma (I'm currently 25). An admittance usually means at least 1 year of hospital follow ups (assuming you're UK based) so this could be what your docs are referring to, don't take it as red that they mean more attacks and admissions (tho if you've dramatically worsened suddenly it may take a while for them to sort out your meds...)

If you're worried speak to your GP/asthma nurse/asthma UK/resp consultant (assuming that you are now under one!) From the sounds of it you have quite a supportive team behind you too, so work with them to try and gain your control back. Try to figure out your trigger(s) so you can do your best to avoid them (some such as colds/weather etc are unavoidable however 😕)

Try not to let your condition control your life! I'm currently at the top end of the scale (severe/difficult asthma, 6 a&e trips since Jan '17, 3 admittance, 10+ life-threatening attacks in the last 2 years, now officially classed as disabled etc etc) and am currently in the process of finishing my degree (yes it all kick off whilst at uni 🙄😒). I've gone from a national level trampolinist/tumbler, to being unable to walk 500m on a bad day however I still coach gymnastics 1x week and attend lectures when I'm not too ill. Collectively my medical team and I are trying everything to help me regain control and most of us believe/hope things will calm down after I graduate (stress/dust/damp being triggers and me living the life of a student 😳).

It's normal to worry and be scared after such experience but getting more control will help. Always carry your reliever (ventolin) with you and if you can you asthma plan, whilst you're nervous about getting out and about again. This will give you a sense of control over your condition and help to build your confidence again. Don't push yourself too hard too fast as this is likely to cause issues, but slow short walks should help (even if they initially are only a couple of houses down and back) - build it slowly. The other thing is to try not to think too much about it, have you meds on hand but the more you think, the more anxious you get, the more likely you are to have an issue (aniexty attacks/asthma attacks - one can lead to the other and asthma can be linked to anxiety/depression).

Again if you're worried or want more (helpful) advice speak to asthma uk nurses - they have years of experience behind them and have probably had to deal with every issue we can think of!!!

Hope this all helps

Emma

[Amyloulou in reply to EmmaF91]

Omg thank you so much this has helped me so much and I'm sorry for how bad it has getting for you too and you've gave a lot of encouragement to not give up and to try and take control where I can. I really appreciate it. I only started on blue and brown inhalers then changed my brown one to purple then to grey and green (can't remember their names) now I'm on the spiromax and using it as reliever and preventer. I'm now on my reduced does of steroids gone from 40mg to 30mg and tomorrow will be on 35mg for 3 days but can slowly feel my wheeze returning fingers crossed it's nothing to worry about don't think people understand the affects that asthma has on our lives and how dangerous it can be thank you so much I'm going to try and not let asthma defy me like as I'm only 27. Thank you again for sharing your experiences with me. X

[EmmaF91 Community Ambassador in reply to Amyloulou]

You're welcome. I've been through the mill a bit, and had to deal with a lot of issues along the way, but I'm always aware that their are others worse off (read about on the site and suddenly your problems seem minuscule!), however I completely agree that finding people who understand your situation is a godsend, and can support you though some really rough times.

If you feel like you're starting to wheeze again on the pred tail off speak to your GP (in person but if not possible over the phone). It could be that you need to reduce slower, or else you'll bounce right back into attack mode (not a nice place to be!), or that you need additional meds or help identifying your triggers. Was in that situation continuously for about 3 months (Feb- April)until my GP suggested the slowest ever wean off (for me) of 5mg every 7 day, then 2.5mg at the end (finished end of June 🙈). Pill counting for weeks was not fun but it did finally get me off the pred (and onto a different med which seems to be helping currently). If you are on a wean down it may also be worth talking to your doc about something to protect your stomach with (i.e. Omeprazole) if they haven't already- I hear stomach ulcers really aren't fun!!!

Completely understand about the lack of understanding out there about asthma! It's either nothing or something the odd child dies from 🙄🙄🙄 people don't seem to understand that adults have severe issues too! If you're having issues in understanding from friends/family/colleagues try doing the straw challenge (plug nose, breathe through narrow straw for a minute or so). Did it with my friends at uni and they suddenly realised not only how scary it could be but also how tiring, then I explained that I feel like that (or worse) for days/weeks/months at a time with the straw getting smaller or bigger depending on my level of control - they stopped moaning at me when I didn't want to go out partying etc cause I was too tired/wheezy after that. It's an easy and 'fun' solution to increase/encourage awareness in your social circles, and hopefully makes life a little bit easier for the next asthmatic they meet!

Keep your chin up. There's a great community on here, willing to listen and offer their own experiences and advice on almost ever situation going. Asthma uk is also an excellent source of useful tips as advice and their hotline is brilliant!

Thinking of you and hope things calm down soon

Emma

[Amyloulou in reply to EmmaF91]

Thank you will have a word with my doc if it continues to get worse. Never thought of the straw challenge but I will give it ago might make people realise how bad and nasty it really is. I really hope that things start to luck up for you to. Thank you ever so much means a lot that we aren't all alone x

[Helenlou111]

Hi sorry to hear you have been unwell, I myself don't have asthma but my son has severe allergic asthma and this site has been a God sent to me xxx

[Amyloulou in reply to Helenlou111]

I only joined yesterday and I've been so down for the bast few weeks it's very uplifting to me that I'm not alone and I've had a lot of good advice already thank you xxx

[risabel59]

Hi Amyloulou,

Welcome to the forum, it seems as though you have already been given great advice, and have a good care team. I will just add my twopennies worth, try to remember in the darkest moments, that asthma rarely stays the same, you go through good and bad phases. Secondly, after you have been as unwell as you have, it may take 3 to 4 months for your lungs to properly recover, they are going to be red, inflamed and very twitchy to almost any irritant, whether you are allergic to it or not. It has taken me 6 months to completely recover properly from my last really bad attack.

Also there are a lot of new treatments that are becoming available that might suitable for you. Ask about Biologics, if they are suitable for you and ask to have FeNo testing, which will tell if you have Eosinophilic asthma, and if steroid treatment is working properly.

Let us know how you do.

R

[Amyloulou in reply to risabel59]

Thank you so much I'm overwhelmed with the fantastic advice I've received already and support. It's horrible at the minute and makes you feel very down and that you can't seem to do the same things that used to be second nature. Hopefully they find the right treatment for me and my back to the best normal I can be. I will let you know how I get on and thank you so much for the fantastic advice xx

[Lynneypin]

Try not to worry, I got asthma at 19 and I'm 60 now. Once controlled you should be able to lead a normal life. Xx

[Amyloulou in reply to Lynneypin]

Thank you xx