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Newly diagnosed

Agrajag profile image
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It's come as quite as a surprise to be diagnosed with asthma in my thirties and I am still trying to wrap my head around the reality of it all. As a former fell runner, I can no longer walk uphill without turning into a coughing, spluttering heap!

I'm due to see the practice nurse on Thurs (don't have an asthma nurse at my surgery), so I was wondering whether anybody could tell me what to expect when I go for the first time? Also, what questions should I be asking when I'm there?

Aaargh so much I don't know about asthma and I'm wondering whether I will ever be able to properly explore the fells again :(

Also, my roommate (who is a smoker) came to me a couple of days ago when I was coughing my lungs out (he'd just finished a ciggy). Breathed all over me and said ""Still not over that cold yet?"".

My reply ""it's not a cold"".

Him: ""yes it is, just take some cough mixture"".

Me: ""It won't work"".

Him: ""Yes it will.""

He walks off to fetch a bottle of cough syrup and plonks it on the table next to me, then lights up another cig. I cough even more.

Him: ""Can you stop coughing for just a minute please?""

Time to find my own place now methinks.

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Agrajag
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I'm sorry you are feeling rubbish. You need to ask as many questions as you can at the appointment - they are supposed to write an asthma action plan with you - this should say how often they will review your condition, what medication you should be taking and at what dosage, what to do in the case of an attack, how to recognise that your condition is getting worse even without an attack. There's quite a lot to discuss. Asthma UK has various leaflets to order, but the doctors surgery should not send you away without you understanding more. Mention a peak flow meter - and ask them to prescribe one - you should be able to find an online calculator which will give you an idea of your best peak flow. Monitor your peak flow regularly, and if you notice it staying at below 80% of your best for more than a few days, go see the doctor. Other signs to watch - are you waking up in the night? Sometimes you're not even aware of why you woke up, but it is a sign that your medication is not quite right. The other important thing is that your medication gets stepped down a little when you are well so that you are on the lowest dosages that keep you well. Hope your inconsiderate flatmate grows some manners too!

Hi and welcome!

That must be pretty frustrating being so active normally and not able to do the fell running :(

I'd agree with everything Jennyc said - perhaps think of questions now and write them down? I always say this but if the nurse/GP doesn't answer your questions the helpline on here (number top left) is great, they always have lots of time and patience and expertise and will explain things you aren't sure about.

If you find the nurse helpful, great; if not I'd try to find one of the GPs who is good and will listen and advise (may involve some trial and error but worth it in the end). They don't have to be the official 'asthma' one if there is; mine isn't but I like him because he listens to me, takes his time and takes me seriously and I always feel he's trying to come up with a workable solution or give me something to take away, which is really helpful. All this is more important to me than him having a 'special interest' in asthma, though it turns out he knows a lot about it anyway as he's interested in sports medicine; as you're quite active normally, a GP with an interest in this area may also be helpful as you may find they're good about advising on exercising when you have asthma and how it might be setting you off.

Oh and your roommate sounds charming! Maybe point out you might cough less if he smoked less around you?

Agrajag profile image
Agrajag

Thanks for the advice. I think Philomela's suggestion about writing down questions beforehand is a good idea, because I am bound to forget stuff otherwise.

Was really suffering last night and it occurred to me that I don't even know how bad bad is. I do have a peak flow meter which the GP prescribed at the same time as my blue inhaler, and she prescribed a Qvar inhaler last week as well.

Thing is, there I was last night, unable to stop coughing or get to sleep. I did my peak flow as usual and it was down to 200 (from 380 at nighttime) so I knew I wasn't right. It took a good few hours of using my blue inhaler before it finally settled down enough for me to get some sleep.

Am feeling better this morning, but not looking forward to another night like that. Now I'm wondering whether to go back to the surgery before Thursday.

in reply to Agrajag

Thanks for the advice. I think Philomela's suggestion about writing down questions beforehand is a good idea, because I am bound to forget stuff otherwise.

Was really suffering last night and it occurred to me that I don't even know how bad bad is. I do have a peak flow meter which the GP prescribed at the same time as my blue inhaler, and she prescribed a Qvar inhaler last week as well.

Thing is, there I was last night, unable to stop coughing or get to sleep. I did my peak flow as usual and it was down to 200 (from 380 at nighttime) so I knew I wasn't right. It took a good few hours of using my blue inhaler before it finally settled down enough for me to get some sleep.

Am feeling better this morning, but not looking forward to another night like that. Now I'm wondering whether to go back to the surgery before Thursday.

Briefly,Peak Flow measurements of 200 is Hospital time in males who should be blowing 580-610 depending on height and body mass,poor peak flow shows your immune system is responding to a trigger and creating more mucous that is building up in your airways.Got a dog or worse a cat, damp dust and vacuum regularly if you have and cannot bear to get rid.. Oh! tell that inconsiderate buffoon you share with to block one of his nostrils and breath only through a straw for a day, this may well bring about a change in his behaviour and further tell him for behaviour to change attitude must first.All the best hope things improve soon.

Annista profile image
Annista

It all takes a lot of getting used to, doesn't it? I'm all for going back to your GP if you're worried, but if you're unsure about it you may be able to call the surgery and tell one of the doctors what's going on. The important thing is not to ignore sypmtoms for too long (I know because I've done it and learnt the hard way)and not feel you're a nuisance if you keep going back because you're feeling rotten.

On the practical side, it might be worth keeping a diary of when your asthma gets worse. I know it's a bit tedious but it could help you to identify things that trigger your asthma so you can avoid them.

oh thats so horrible how inconsiderate. joys of being asthmatic so many people dont understand at all. always getting told to take stuff for a cough when i know its my asthma, when i was first diagnosed i kept a symptom diary and i always do my peak flow morning and night so i can see if its becoming out of control. hope your asthma appointment goes well. if your ever worried about asthma get it checked dont push it aside trust me ive done that before and paid for it to. write down any questions you can think off before hand and theres plenty of info on here and documents that you can order that i have myself and found very usefull. hope you get it under control soon

Hi

I've only recently just been diagnosised as well. I keep a symptom diary & a peak flow chart on my excel, as a check box - there's even a space at the side to note down issues/questions. So I can just print it out & take the the GP/Nurse whenever I go. I also keep a blank one which I use a pen on, (just so I have a backup)

Asthma UK has a Be In Control pack, which has a peak flow diary. I recommend ordering them, the information they give is top notch, plus get a medicine card so you know which med's you take in case of emergencies.

I agree - be aware that a peak flow of 200 is a real danger sign - for Gods sake don't suffer if your inhaler isn't helping after 10 puffs over 20 minutes or so - you need an ambulance! Never ever be scared of wasting the paramedics' time. They have probably visited plenty of asthmatics who've got a bit better in the time it took to get there than you'd think and I bet they mind that a lot less than some idiot with toothache etc! Hope you get everything sorted to your satisfaction at your appointment, but it sounds like your asthma is pretty troublesome just at the moment and needs very careful monitoring. Don't underestimate it!

Take care and good luck.

The nurse or GP should be able to find you some meds that control things for you and you can get back out it the fells running. I run and climb mountains although I don't combine the two, so I know it's possible to do active things when asthma's good. It might take a little while to find the right meds, but in the meantime don't be affraid to get some help (GP/OOH/999) if you're struggling. No health proffessional has ever given me the impression that I've waisted thier time, in fact the opposite is true, they're usually glad that I came/called for help.

Agrajag profile image
Agrajag

Hi again

The nurse appt went ok. She answered some of my questions and confirmed that I should have called the OOH doc at the very least when I was suffering all night. She booked me in for a spirometry test in a couple weeks time, but did not draw up an asthma action plan. She also doubled my dosage for the Qvar inhaler.

However... yesterday I had my first proper scare. Had several asthma attacks, first starting in the morning, then got worse as the day went on. A friend who is a first aider (and also asthmatic) brought me back to her place to keep an eye on me. I did end up in A&E in the end. Five nebulisers and a steroid injection later, my breathing finally eased up. Turns out I have a chest infection which was making me respond to triggers a bit more than usual. They sent me back home at 1am with antibiotics.

So all in all it was a long, panicky night and I am exhausted today. I now REALLY feel for you guys who have to put up with bad attacks all the time :(

Oh Crazy Cumbrian, I am sorry you had such a bad night and such a scare. Trouble is, when you first get diagnosed, they might not give you enough to get proper control - the inhalers take weeks - you should have had prednisolone (steroid tablets) and they should have realised you had a chest infection too. Trouble is its all trial and error in the early days. You can expect to feel exhausted, and weak for a few days following an attack like that. Don't overdo it, and don't stray too far from home. Hope the antibiotics work soon too. Chest infection plus asthma = worst combination.

Good luck. Get better.

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