Any advice on my royal brompton appointment today!!

Hi

i have just got home from first appointment at the Brompton, i have come home feeling really deflated and utterly confused. any advice would be greatfully recieved.

Firstly i was meant to be seeing Dr Menzies Gow, but instead saw the respiratory nurse, who fired a hundred questions at me and some i just didnt know the answer to. she went through my list of meds and said that she felt some where no use at all, she also looked at lung function and said it was normal (i am actually feeling well today and have been for the last couple of weeks, i am on 30mg of pred and lost of meds) i dont think i got it accross exactly how bad it effects my life and i felt like she was questioning why i was there, i have had repeated admissions etc and not been of pred for months. she then went on and asked how i would feel if she said it wasnt asthma, well i kind of sat there and said well what is it then, i now feel like i am waisting there time and it is all in my head!!

she said that i need to go in for a week in april, and they will do loads of tests, i just completly confused by it all! can anyone offer me any advice?

thankyou in advance

sarah

1 Reply

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  • Sarah 1st of all calm down. It sounds like you saw Debbie who is one of the most awesome and wonderful medical proffesionals I have come across, she really knows her stuff. Don't panic the questions seemly endless and sometimes totally unrelated to your asthma they fire at you help them peice together what is going on. Many many people go to the RBH as last ditch attempt to get some kind of control over their asthma. I might have had several pre-emptive admissions getting the asthma before it gets me but I have not had a huge major attack for over a year now (major for me being admitted to ITU) and that is in no small part down to Debbie.

    I prefer a direct no nonsense approach and overtime I have got to know the team and they have got to know me, I hate changing anything so they suggest it one ward round, I refuse and by the next one I have usually thought through what they said and end agreeing with them, it would be nice to be right once though :)u

    The week long DAB or difficult asthma protocol is so they can take a snap shot of your lungs over a couple of days then they go away and talk about it and suggest a plan of action. A friend of mine did the DAB when she was getting PF's of over 400 she was scared stiff they would think she was making it all up but they can see through the various tests if you have asthma or if you have something else. Many people go away with a different diagnosis and a whole new load of treatments.

    I don't know where I would be without Debbie probably not here at all when I think what I was doing everyday and I thought was normal. Several times I have emailed her at 5am saying help and when she gets in usually before 8 she is straight on the phone. She will fight your corner all the way but you have to play straight with her and you might find some things like re-home your cats, give up work ect hugely challenging but they only have your best interests at heart. They do treat everyones asthma as individual so you don't get the weird looks when your asthma does not quite behave in the same way as the ""norm"" at the RBH no-ones asthma is ""the norm"".

    Don't be downhearted about today clinics are always busy and a bit frantic. You will get a better chance to get to know the team and understand everything when you go in for you DAP.

    Best of luck and please don't think they were labelling you a fraud or that they think it is all your head I am sure that is not the case. Just use this opportunity to get the best treat you can get in the Europe (I know cos my father checked out to see if there was anywhere better for me to go!) and worry about tomorrow when tomorrow comes.

    Bex

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