Light at the end of the tunnel, maybe?

[_Badger_]

I had my 3 week follow up check after being taken to A& E due to some numpty spraying perfume on a train. I've recently changed GP practice and whilst they stopped my shared care for one of my non-asthma drugs, their asthma nurse is amazing!!!

She had read my notes before I went in (unheard of!) and before I'd even sat down had acknowledged what a hard time I'd been having with my chest. We talked through all the different inhalers I'd been tried on and why they were changed each time. Also talked about my add on meds, the effects of having had pneumonia, the scary "might this be it" attacks and how my symptoms currently are.

She had already decided she was putting in a referral to respiratory before we did the "how bad is your asthma" questions, which bumped the referal up to urgent! She then spent ages going through all the possible inhalers to try and find if there was anything aerosol that comes close to Relvar (the only one that has ever really helped me but I had constant throat infections so had to change).

She even ran her decision past the GP but when they were honest and said they don't really do inhaler prescription she went to the other practice in the building and consulted their two asthma nurses. Turns out my current inhaler is marginally better than the only other option.

I am desperately trying not to get my hopes up that the respiratory referral may bring some relief but I am so so so wanting it to! Especially now the terrifying attacks have happened outside of having a respiratory infection.

Anyone any experience of respiratory referrals what I can expect, whether I should do anything (other than get on the cancellation list asap) that I can do to prepare?

Due to past medical trauma I'm worried if I'm having a good day they will just tell me I'm fine!

[Troilus]

I’m “under” a hospital respiratory team. First visit is chat. They like peak flow charts or at least mine does. They might do a spirometry test to get your base line ( you can still take your meds for this one) and a FeNo test. It is possible depending on their assessment that they will make adjustments to your medication.

After the initial visit I was seen every six weeks, but I could ring the clinic direct if needed. Once I was stable the appointments got further and further apart and I now have a yearly appointment with the consultant.

[peege]

A great respiratory nurse is worth his/her weight in gold, someone who actually reads your medical record, I've only had two of those in my adult asthma life. At my first referral vist at St George's in SW 2013 I had allergy testing, about six on my arm - aspergillus was suspected. Thankfully only a mild reaction to that and a big reaction to mould. All the others were okay - big relief the dog could stay and I could stop damp dusting daily & get out my goosedown pillows and duvet again. It's been so useful to have had those tests. There'd been the usual weighing BP

Next was the full LFT (lung function test), check your referral letter to see if any special requirements. Mine was done in a glass cubicle, the whole test is very helpful on a whole host of aspects of diagnosis and to see how your lungs are now. I also had a CT scan - which the consultant was reluctant to allow. I got one a couple of months later on seeing his registrar who asked me "have you refused a CT scan?" Ha, says I, I've been begging for one for ages so PLEASE let me gave one. She sent me for one. Next appt she showed me the scan going section by section. She was able to confirm Small Airways Disease as well as that I have asthma. To my mind a referral & the CT scan are invaluable in diagnosis for anything other than asthma going on.

The staff are very reassuring during tests fir anxious patients (well mine were even thoughI'm not generally anxious).

[Homely2 Administrator]

A hospital respiratory team is great for me, my gp asthma nurse is superb, but she has her limits, and knows them, while my GPS do not get asthma.

At my hospital, the asthma nurses are into inhaler technique, altering my inhalers, prescribing pred as needed.They like peak flow diaries, asthma questionnaires and feno tests. They are superb at day to day management of asthma. I can ring them direct when I lose control of my asthma and they ring back that day.

The consultant operates rather separately and likes laboratory done spirometry, mannitol tests, ct scans, x rays and endless blood tests etc. He is interested in the bigger picture, like, is it just asthma, he is less interested in my day to day treatment. He is a general respiratory consultant. After a year he has established that it is just asthma. I see him every three months, though this may be going monthly.

To prepare have a chat with a nurse on the asthma uk helpline beforehand, it helps you to get the terminology and know what you are expecting.

[Patk1]

Gd that Yr asthma nurse is so thorough x

[Gareth57]

Hi, I can't comment on consultant care but I wondered if you have tried a DPI rather than aerosol? I found the aerosols irritated my lungs and DPI is better!

[_Badger_ in reply to Gareth57]

I used to be on DPI and Relvar was an absolute game changer. Unfortunately the stronger steroid dose also brought regular throat infections no matter how careful I was with oral hygiene following it. There doesn't seem to be an aerosol with the same drug combination.

[_Badger_]

Thank you all for your kind comments. Since this I had a flare up at New Year that after a call to 111 ended up with them ringing me an ambulance. My chest just isn't calming down and I have no idea why.

Since then I've been on courses of pred, come off for a few days, get worse, go back on. Now on 4th this year and weaning off.

I am so sick of feeling so rubbish and the side effects, Yuck. Hoping that "urgent" appointment doesn't take too long.