4 emergency hospital trips since February

[EJS87]

I've had asthma since I was 6. Was seen at Great Ormond Street and also the Royal Brompton when I nearly died when I was 18.

Recently, it really flared up after a nasty respiratory virus that started about the 15th December. Had a steriods and antibiotics. Things didn't improve. January I had a call with my normal GP who restarted montelukast and was told to see an asthma nurse. 1st February I had an awful experience with the asthma nurse and duty team. Despite my peak flow being in the amber zone and warning signs of an asthma attack they refused steriods. Only thing they did was change my seretide to fostair and the asthma nurse said to not use my blue inhaler as much.

I was blue light to hospital on the 6th February and into resus and kept in for one night. Happened again on 20th February and kept in for 2 nights. A consultant in A&E mentioned Biologics which I hadn't heard of before. Unfortunately my notes did not get sent to the Respiratory Team for outpatient appointments.

Had another attack on the 27th March, despite everything being the same and nebulisers, blue lighted, resus adrenaline etc the doctor said it wasn't asthma.

I'm back in A&E again today.

My outpatient appointment isn't until the 22nd April and I have the respiratory nurses first....apparently this the pathway.....is this normal?

Current medication is:

Fostair 2 puffs 4 times a day.

Theophylline 300mg twice a day

Montelukast

Spirvia 2 puffs once a day

Normal peak flow is 580. Has been at 400 or less since December.

Today they are looking at sending me home with weaning doses of prednisolone.

[Patk1]

It's obviously not well controlled. Do u use an aerosure spacer device with inhalers + has anyone checked Yr inhaler technique lately? It can make a big difference.as soon as my asthma starts I use salbutamol and relax,using " controlled breathing"- see aluk website,as anxiety makes breathing probs much worse.Did the Dr suggest what he thought it was if not asthma

[EJS87 in reply to Patk1]

I use spaces and it has all been reviewed

[Homely2 Administrator]

It is not nice when you get it out of control like this.

I had a similar patch of a and and e and hospitalisation a year or so ago, the consultant stopped it with a four week weaning dose of prednisolone and adding spiriva to the mix.

He had now mainly stopped my need for prednisolone by putting in alvesco to my meds, while breathing exercises have helped my control, particularly for the sharp attacks.

So now I have not been admitted to hospital for a year and last pred was January.

It will be great if your asthma qualifies for biologics as it avoids the damage caused by steroids and works really well for some people.

Seeing the hospital respiratory nurse was great for me, and I got permission to call her whenever I had an urgent issue. She had good empathy and some immediate ideas, she also did all the basic testing then and there, and suggested the alvesco.

The consultant, for me, was much more interested in the type of asthma I had, unfortunately my type does not fit most biologics, and he is still rather slowly investigating. So seeing respiratory nurse and then consultant worked well for me, it works well as a team, one needs the other.

The whole experience will have been a little traumatic, so I would chat it through with a nurse at asthma UK on 0300 2225800, office hours. Just going through it will help you clarify it all in your brain, and they can explain biologics to you as well.

I would also look at the free online courses asthma UK do, I have just done their breathe easy programme, which helped me.

[peege]

What scary and traumatic times you're having, I'm so sorry. I have a terror of A&E since a dreadful experience in 2013.

All I can say is please do call the helpline tomorrow 0300 222 5800, they'll hopefully have the latest guidance/ advice for your situation. Wishing you all the best, Peege

PS, there used to be something called NHS Pathways that GPs use, I found it very useful years ago on how not to answer doctors so as to be treated in a more timely manner. I don't know if it's still in use but perhaps worth a search

[HowNowWhatNow]

This sounds very scary - the whole journey you’ve been on.

Please put your concerns about not being listened to in writing to a consultant and matron (managing nurse), setting out what you would like to happen in future and asking for a call from the matron, where she can explain how the system should work, when it’s working. Your complaint - in writing! - will help other people who come after you with similar, and improve your future dealings with health services.

Complaining is the only way systems change, and especially in an NHS where money is as tight as it is. Lack of money fast translates into lack of sympathy / empathy, sadly.

[Bagpiper0304]

Sounds scary, I've been very lucky never to have had an A&E admission. i was started on a Relvar inhaler a month ago, it's a powder inhaler and I was dubious at first but it has been a revelation for me. I'm lucky if I've used my blue inhaler twice a day since I started on this and i was into double figures at times. I take 1 puff at night along with my montelukast and then my spiriva in the morning and that's all.

[ReedB]

Sounds like you've had a right time of it. It's good that you have a specialist appointment coming up. Unfortunately it does take a while and sometimes it is a case of seeing the nurses first or at least that's what has happened to me on occasion. I had a similar virus in the Autumn which took 3months (Nov-Feb) and a lot of medication to start to feel better. I think once your lungs get to that point it takes a long while for them to recover but they will! I'm currently going through a lot of tests to figure out if I can be approved for Biologics. It's worth reading up on them as you can ask when you see the specialist xxx

[EJS87 in reply to ReedB]

What sort of tests have they done so far if you don't mind me asking? x

[ReedB in reply to EJS87]

Not at all... I've had numerous allergy testing over the years so they know what I'm allergic too. I'm now having more blood tests to check my esophil counts. I have no idea how but my consultant also wants to check my ability to fight off infection. This is likely through bloods too. I'm also going for a CT scan so they can assess the condition of my lungs. Alongside this my GP has already completed blood tests too to rule out anything obvious such as blood sugars, thyroid etc... the bottom line for me is that I have very twitchy lungs that don't agree with allergens or viruses. I can be absolutely fine for long periods but as soon as something upsets me it takes a lot of medication to sort it out. Bit of a rollercoaster!

I hope that helps x

[Rex77]

Do you have high pulse at rest, over 85, for no know cause?

Do you have nightmares or dreams of stressful situations.

Thanks,

Rex

[Lysistrata Administrator Community Ambassador in reply to Rex77]

This post is from a few months back so I don't know if the original poster will see it.

I will say, for anyone reading, that asthma can increase your resting heart rate quite a lot even without medications. It's one of the features they look for in an attack, as it means your heart is working harder to help you when your breathing is difficult.