DESPERATE FOR ADVICE

Hi

I am desperate for some advice so anything would be grateful.

i have had a horrendous year with my asthma with lots of admissions and two stays in CCU.

i underwent the DAP at The brompton in May (was very well during the week, which i think they call sods law) they didnt complete all tests so was due to go back in at the end of June to have histamine challenge and PH probe as well as see physio and now hyperventialtion study (whatever that was) anyway got a letter yesterday from them with a summary of what they found, aparently nothing!! i had good lung finction and all they found was some hyperventialtion in blood gases, the letter is makes it sound like the whole situation isnt real and that there is no problem. it says that the tests showed no sign of asthma well i am confused and have the following questions:

1 why have i had so many hospital admissions requiring IV salbutamol, maganesium, nebs etc

2. i thought it was possible to have normal lung function when no symptomatic?

3. how much can hyperventilation affect asthma symptons ( i am not aware that i am hyperventialting so not sure how i can help this)?

4. is this all in my head?

i am not sure what to do now, i am on loads of meds and have to wonder what for, i have decided that i am not going back into the Brompton as from the past three experineces i have found it completely awful and of little help, (please dont shout at me as i know some people have been a great deal by them).

i just dont know what to do now, i am on the verge of loosing my job due to constantly being of sick and have given up so much due to my asthma and now i have to wonder what is going on!!!

I am sorry to ask so many questions but i am really deprerate i feel so alone and fed up with the whole situation. i dont have the energy to argue with them but i know that three weeks ago when i was in CCU feeling like i was going to die, that was real!!!

best wishes

sarah

7 Replies

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  • Have you got a friendly local cons or GP whom you could ring and speak to/go see. They will probably have been copied in to the letter by RBH and will be able to help you make a plan of action as to what to do next.

    I can understand how confusing it must be, I have had two consultants arguing previously over what the best course of action for me was, as my new consultant was not convinced that I had asthma, or at least not just asthma. Sadly it looks as though he was wrong. But when I doubted myself my GP was fantastic in keeping me going, saying that irrelevant of what he thought, if the treatment made a difference then it was worth continuing with.

    What I was trying to say is that I have found that talking it through with someone who knows your medical history but also knows you as a person can be massively helpful. I really hope you get it sorted soon. It must be so confusing for you.

    Love

    Emma

    xxx

  • Sarah, I can sympathise entirely with you as i am in a similar position. I may lose my job due to time off work, my asthma is badly controlled over the last few months after being extremely fit and active my entire life and it is entirely depressing at times. I don't think people entirely appreciate the psychological effect of asthma.

    Having said that, you really should keep your appointment with the Hospital. It sounds to me like they are considering the possibility that you are suffering from hyperventilation, something they tried with me in 2007. In my case i had to insist on having allergy tests as i suspected my asthma was related to pollen. Numerous docs and consultants were adamant that it was hyperventilation. Until blood tests results indicated i was very allergic to pollen. I didn't get an apology but i am now seeing an allergy specialist.

    The moral of my story? Doctors are generally clever people, they spend a long time learning their trade. They are not, however, omniscient, despite what some of them think. Don't be afraid to examine your situation yourself and do your own detective work. What the triggers could be etc. They should really admit you to the hospital for a few days to increase the chance of them seeing your symptoms. Perhaps next time you're there you could ask. Don't be afraid to, it's your NHS, they're not doing you a favour, you pay for it.

    Above all, hard though it may be, try and keep your chin up. Try not to dwell on being ill. I find escaping in books works for me but whatever your fancy is. Winston Churchill put it best; 'When you're going through hell, keep going'. Good luck. >;o)

    Christian

  • THANKS

    Thank you for your messages, i have managed to get appointment with my asthma nurse tommorrow, i have faxed letter to her and she is going to show it to my local consultant hopefully before i see her.

    Thank you once again for your replys, it helps to know other people have been there.

    Sarah

  • Oh Sarah I am so sorry you are having a bad time. The letter may make it sound like it is not real but they did not say you don't have asthma. There are many other conditions that mimic asthma and are much rarer. I would suggest you kept your RBH appointment took the letter with you and tell them how it made you feel. I can honestly say they are caring bunch, can you take someone with you for support or if you feel you can't cope with admission call and ask to see Dr Menzies-Gow in clinic explaing why. Call the switchboard and ask for his PA. Sometimes someone has said something to me almost as passing comment and I have wrongly assumed that they are thinking that. Usually the mis-communication is resolved next time I see Dr Menzies-Gow. There is no gold standard test for asthma. I understand how stressful all this is. I am going through am unrelated miss-communication mess at the moment. Off to out patients on Wednesday and dreading it, but I would rather go and get things sorted out once and for all and hear it from the Boss, I also want a chance to argue my point of view. GIve it one more go at least finish the DAP if it does not work out then at least you know you did everything asked of you. I rave about it because they found solutions to some of my asthma problems but I have had rocky times there but at least they listen to you and make you feel part of the process. Yes going through the DAP is hard but you have the satisfaction of knowing you did it. I am sure the letter was never meant to upset you or put you off, there are other tests that ""prove"" asthma the histamine challenge being one of them.

    Please feel free to PM me Sarah.

    Hugs

    Bex

  • Hi Sarah,

    Can I echo everything Bex has said. I also did a DAP type thingy though as an outpatient, up at the North West Lung Centre (Wythenshawe) not RBH. I can completely understand why you would be feeling confused & scared and not want to go back to finish it. At one point I felt a little like that. I would try and go back and complete it though, as Bex said then you’ve done everything you can and you won’t be left thinking …’what if I’d finished it.’

    I got very disheartened half through what seemed like endless tests. Like you I was told my lung function was OK and I genuinely thought they would turn around at the end and tell me I was a wee bit mad. They didn’t, my CT Scan showed bronchiectasis and immunology stuff revealed a congenital immune deficiency (in addition to boring old asthma). This explained the constant infections and exacerbations of asthma. Now I’m having treatment for this I’ve had one admission in a year as opposed to 9!

    So I suppose like Bex I’m a bit of a success story. Going to Wythenshawe was the best thing I ever did so like her I tend to rave about it.

    I really really hope things work out for you,

    Feel free to PM me,

    STX

    on nights!

  • THANKYOU

    Thankyou to all of you that have replied i really appreciate it. i have spoken to my local consultant and nurse and they really want me to go back for the last few tests, they think there is nothing to lose and if they find nothing then we havent lost anything which i guess is fair enough!!

    they have also reassured me that this is not all in my head (which i know but is how i have been made to feel) as they have seen me at my worst in hospital so this makes me feel better about it all.

    Thanks again

    Best Wishes

    Sarah

  • Sarah that is very brave of you, I hope you find some answers. Who was it who said there are more questions than answers!

    Hugs

    Bex

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