Lung function etc

I have brittle asthma , coupled with chronic hyperventilation syndrome and dysfunctional breathing . I recently had a stay in hospital under a new consultant who said my anxiety was a big contributory factor to attack and refered me to the psychiatric team m who since I've been discharged have decided I don't need follow up . However my consultant - who is new at the hospital - he used to work at the trusts sister hospital wants to re run loads of tests , more lung function and a test that measures nitrous oxide ??

I take max meds as preventatives and have been on oral steroids since 1995 - my maintainance dose is now 15 mg . Will this affect the results of all the tests . When I am welli can blow a peak flow of 450 - 480 and don't take hardly any reliever meds ( smart regime ) during the day but when I am ill I am usually on optiflow, hydrocortisone , IV aminophylline and IV magnisium . I have had to give up work and am registered disabled with my asthma but I don't understand why he wants to do all these tests , I spent 3 months at the Brompton and endured every test posi le many years ago . It is if he does not believe my symptoms or diagnosis and I'm scared of what's ahead . I used to have a good relationship with the Resp nurse at the hospital but I did not even see her this last admission so could not discus with her and my consultant promised me a follow up appointment after discharge with her to check all ok - usually within 2 weeks - I've been home 2 weeks now and heard nothing and I just feel I've been abandoned because it was anxiety based . I have trouble sleeping each night and worry so much what people are thinking since my last admission and now wondering - is it all my fault and in my head . Just feel totally alone

Surely if I am wel, when they do the lung function then they will be normal ???

So confused

Any advice ???

7 Replies

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  • You should call the respiratory nurse and ask to speak to her if you need to. Whatever you definitely need to get back to your GP or someone and talk this through. Do you have someone you can take with you to your appointments? It sometimes helps to have someone with you to remind you to ask the right questions and they tend to remember more of the consultation too as we often get caught up on one thing. I always write my questions out and leave spaces so that I can put the replies in and take two copies, one for me and one for the Doc and if I take someone else with me then give them a copy too so that we can all go through what I want answered. You can also ask if they mind if you record the consultation on your mobile phone so that you can go through it again in your own time. Hope some of this helps just get in touch and chase up your next appointment it may be that you have been missed because your notes went to another team so phone and check up on that if you are usually seen after two weeks then ring and ask them about that.

    Hope you get some answers. Try not to worry it is not good for you. And anxiety does not help us people with asthma.

    Take care of yourself.

    Sian

    Xxx

  • Thank you Sian , your answer makes so much sense , I just couldn't seem to ro see the wood for the trees ! I am going to ring Resp nurse today - I've plucked up the courage and I already have an appointment to see my GP xx thanks for caring xx

  • It's not unusual for a new consultant to want to repeat tests. Things change and he/she probably just wants to see how your lungs are at the moment.

  • Resp nurse contacted and appt made !! 😮

  • Hope it all goes OK

  • Thank you , how are you doing ??

  • Doing great at the moment. Had a funny day yesterday. Was aching all over and could barely move without pain. Thankfully a little better today still achy but at least I can move. Have no idea what it was but glad it is going.

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