Is there a life with severe asthma? - Asthma Community ...

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Is there a life with severe asthma?

Jasmine22 profile image

Hello all.

I only really discovered I had asthma 6 days ago. I ended up in hospital in a life threatening condition and am finding it all so difficult to come to terms with.

I’ve had nasty chesty infections since having whooping cough at age 3. I was told 2 years ago that I had suspected asthma and was sent away with an inhaler to use as required.

My fourth bad chest this year took me to A&E where I expected to be given some meds and sent on my way, Instead I spent all week on oxygen and nebulisers.

Now that I’ve been discharged I’m falling apart. I’m so petrified that I’m going to die. It’s all such a massive shock and I have no idea how to handle it. Any advice would be greatly appreciated please.

14 Replies
Lysistrata profile image
LysistrataAdministrator

Hi Jasmine and welcome!

Sorry to hear about this - that must be a shock. You should have had support and it sounds like proper preventer medication before you ended up in this situation. You are not supposed to be just left on the reliever inhaler alone while you struggle, so sorting that by itself should help.

The good news is that because it sounds like you've really not had appropriate treatment/enough treatment day to day so far, there is every chance that once you get on the right treatment, you should be able to get things under control. This forum tends to be full of people who are having problems, and it won't show you the people who are living with generally controlled asthma and not needing hospital.

The NHS while it can be great can also be a bit variable about explaining things. Did they tell you anything about follow-up, or give you new medications and explain why you need them? From experience even as someone who has been in hospital a few times, they can often not be great about that, or you may well have been feeling really tired by the attack and the lack of sleep and not really in a place to take it in yet.

I would really urge you to speak to one of the asthma nurses here next week - they are lovely and experienced and they will have much more time to listen and explain things than the hospital or your GP probably can. They're free to call on 0300 222 5800, Monday-Friday, 9am-5pm. Or you can WhatsApp them on 07378 606 728.

Meanwhile, looking at the Asthma UK website may help, like some of the pages here (not all of them will be relevant but some may be): asthma.org.uk/advice/living...

In your own time, perhaps also take a bit of time to read these posts, which may help:

New to asthma: healthunlocked.com/asthmauk...

What to do when: healthunlocked.com/asthmauk...

Don't try to cram everything in in one go, but it may be helpful and reassuring to read them. I don't know if you've just got out of hospital but as I said above it is exhausting for anyone and you have all the emotions with it being so new and not knowing, so make sure you get plenty of rest and be nice to yourself!

If you have any questions once it's had time to settle in and you've learned a bit more eg about any medications you're on, you can ask them here.

Jasmine22 profile image
Jasmine22 in reply to Lysistrata

Thank you so much. I’m feeling very unwell this evening so will write again soon.

Welcome Jasmine.

I totally agree with Lysistrata. And call Asthma UK nurses as often as you need. It's early days and you have had a shock and it's overwhelming, but once your doctor and yourself have established a good medicine regime then you will start to feel back in control. There will be blips, but it's all about having a plan (Asthma UK will explain) and acting on it, sooner rather than later.

And remember that our forum is here 24/7 and you can ask (or rant) about anything.

Take care.

Jasmine22 profile image
Jasmine22 in reply to Poobah

Thank you so much. I’m in a really bad place this evening so will wrote more later.

I know exactly how you feel. O had the same experience. I had a chesty cough since last June and was told you may have asthma but we can't test you. Here's an inhaler. Move forward to February this year and I was finally diagnosed with asthma, given Fostair 100, but it was too late. I ended up with a nasty exasperation, didn't even understand what what was. I ended up in A&E twice, on lot's of steroids and antibiotics and am now immuno compromised. I also thought that I was going to die and was in major shock. Fast forward to now. I did speak to the asthma UK physiotherapist who was fantastic. I learnt to exercise every day, i do this at home as pollen is a trigger. I don't drink caffeine, i do drink dairy, i sleep propped up sideways on pillows, and I have worked with a breathing teacher. I'm still suffer with mucus, but I feel fitter and sleep better. Also breathe through your nose only and breathe into your diaphragm (the bottom of your ribs and sideways). I hope that you feel better soon. It takes a lot of work but you will get there. Good luck and feel free to contact me with questions about my experience. Ps I also have severe asthma.

I suffer with 4 severe lung problems and I am sure that all members of this support group send their sympathy. There is a light at the end of the tunnel as it may take a while to get the appropriate medication and support from from a good consultant GP and asthma nurse. I also have an excellent physiotherapist teamwho are always on hand to help me when in difficulty. Insidentaly I am on first name terms with all of my advisers. Keep your chin up and do not be afraid everyone will help you, and tell all your family freinds and neighbours your problems, I am sure that they will help you along the way.

Yes. Absolutely yes, the caveat being over time. Over time because it’ll take time to recover; it’ll take time for your meds to kick in; it’ll take time to get the balance of meds right; and it’ll take time to recognise your triggers and if not triggers, the signs that means your asthma is deteriorating and you need help that is beyond your reliever.

Do not be scared to call Asthma UK nurses and do not be scared to go to A&E if the flare is spiralling downwards - better to be early than having to go in as an emergency.

you can live a productive life, you get used to it. It will take time.

take the steroid inhalers they prescribe, do not stop when u get better;

always carry 2 blue inhalers

identify the triggers at home and work and control\remove them. If it's the air, filter the air.

get allergen tested

If steroid inhalers don't work, press them to get you on xolair.

Thank you so much for all of your input. It’s always great to know that you’re not alone. I think that I am currently just totally overwhelmed. During the past four years I have gone from a confident, sporty woman to a disabled wreck. I’ve been diagnosed with lupus, fibromyalgia and hyper mobility. It’s been a constant struggle with adapting my life and now I’ve had this thrown into the mix I don’t know where to turn.Yesterday was horrendous. I had literally only managed 10 hours sleep in seven days and my cough had changed on Friday evening into something I didn’t recognise. It was like a valve would close in my throat and I would be left unable to breathe for several seconds until it opened again. My daughter and her husband are both consultants but they couldn’t match my symptoms to any condition. My partner had to go to the shop and when he was gone I had a total panic attack and believed I would never stop coughing and just collapse. He managed to sort me and put me back to bed and then I had an ocular migraine. Of course I was going to go blind!

Luckily I managed some sleep last night and whist I’m still feeling terribly weak, the throat closing has ceased and I don’t feel desperate.

Last week at this time I was feeling really rough and thought that A&E would give me some meds and send me on my way. If only I’d realised just how very sick I was. Anyway, onwards and upwards. I have a telephone consultation with my GP tomorrow morning and hopefully we’ll start to form an action plan. I will get on top again and once again I’m so grateful for all of your kind responses. I feel much less alone.

Remember that you always have the option of a private consultation. There is something called Vocal Cord Dysfunction that many medical staff have no idea of. The Royal Brompton Hospital has staff who have a special interest in this. It can happen to anyone, even athletes, so don’t despair. X

I too was sport obsessed - rugby predominately. It takes a while not to be frustrated.

However, having been resuscitated last year following a massive series of attacks, I’m now taking up outdoor swimming

- it feels invigorating and has no joint impact and actually isn’t that aerobic!

I’d also recommend weight lifting / strength & conditioning - both are highly controlled (joints and breath) and can be done with really light weights. The main thing for me is that psychologically it keeps you feeling as though you’re in a training routine.

Hey Jasmine22 - I’m so sorry to hear of your situation and how it’s making you feel so low. You’ve been given some cracking advice but I just also wanted to echo how helpful the AUK nurses are- they’re great listeners and helped me many times over the years.

Asthma is scary but there is light at the end of the tunnel. I have Severe Asthma that once took over my whole life, but now I live symptom free. I’m incredibly lucky that I have a fantastic team that helped me get here but I hope that helps reassure you that you can live with it.

My best advice to you is to write a symptom diary. The care I received was so poor until I started to document everything and the diary was a god send.

Sending you lots of well wishes. You will get there but he kind to yourself, you’ve been through a lot 🙏🏽

Jasmine22 profile image
Jasmine22 in reply to MrsCMK

Thank you for taking the time to reply. It’s currently 03.41 and my cough is ensuring that they’ll be little it no sleep tonight!I’m so glad that you managed to get to a good place with your situation. I think it’s always so difficult to function when you feel so out of control, especially with something so important.

I think I just need a period of acceptance that I’m dealing with yet another condition to add to my list. It will become easier I’m sure when this chest infection has cleared up.

Once again, thank you 😊

There is superb advice here and I'm not going to add to the medical, but once you are beginning to feel better, you should talk to someone about the huge issues you are dealing with. It is like a bereavement when the sporty person you were is suddenly taken away. It is such a lot all at once and you can ask your doctor about talking therapy to help you cope. No use now, of course, as the talking bit may be beyond you at the moment, but do consider it when things have calmed down.

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