Feel as though I am chasing my tail!!

Agh, dunno why I am struggling SO much with everything just now!!

I have moved from a team, with whom I was happy with, and had an amazing relationship with my asthma nurse there, to a specialist centre, where I thought things may become more sorted/settled/reduce admissions etc.

My first appointment with my consultant there was good, however the following one and one last week wasn's as positive. Although last week wasn't too bad. He wants to do a planned admission to carry out a shed load of tests etc, which is fine, but he thinks that the biggest component of it is dysfunctional breathing (of at least there is a large component). Between 2 clinic appointments and in the space pf a month my FEV1 has dropped by more than 40%.

In the last few weeks I have had 2 very severe admissions (ITU, HDU, art lines, anaesthetics involvement, awful blood gasses and lots and lots of treatment) at my local hospital where my original cons is. He works closely with my current specialist centre, so it has been decided that dual care between the two of them is going to be the best route forwards - I am happy with this!! I feel as though I may actually be getting somewhere.

I have decided though, that now isnt the best time to do the planned admission. Original cons was talking about how there may potentially be an element of dysfunctional breathing, however the evidence that he has (and is going to share) can be nothing but asthma. Which is why I am not doing it just now as there may be a better route forwards.

But things seem to settle on one hand, before becoming unsettled on another ... I went to see my GP today, with whom I have a really good relationship with, She seems worried about the descision not to do it and doesn't seem to understand my reasoning ... I just couldnt articulate myself.

Agh, this has lead me to overthink everything again ... I just need it all to go away ...

8 Replies

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  • I'm not clear on why you think this isn't a good time to do boatloads of tests - seems like the sooner more information is on the table, the sooner there will be solutions. What better route forward do you see?

  • It's not so much having a load of tests ... I don't mind that... It'll give a picture of what is going off. It's more that cons feels that there is soo much evidence there for the asthma, stuff like histamine challenges aren't gonna show anything different as there's so much stuff noted from when it

    Kicks off. However other tests - sleep study etc is in the pipeline, so hopefully things will come up which are easy to fix?!

  • Laura I also don't understand why you wouldn't be grabbing this chance with both hands. Its a great opportunity to have a fresh perspective, clear results from all the tests they do, and a subsequent plan. Its exactly what happened when I went to Papworth, and if it hadn't happened I probably wouldn't be here. There are very good reasons why specialist centres do this, its because things get missed, misdiagnosed, mistreated etc, and many tests aren't available at local hospitals.

    I just don't get it. For a long time you've been unhappy at your care not being able to stabilise you, and now you are unhappy that they want to throw a bucketload of resources at you. To be frank, unless you understand every test they are going to do, what it entails, and the potential outcomes - and you can diagnose yourself, how can you possibly know its not going to show anything different? Clearly the doctors don't agree.

    Lynda

  • Hey Laura,

    Ugh it's all just a bit crap at the moment and I really do hope it improves soon,

    I do get that you are aprehensive about doing the mannitol testing especially given that you have had some really scary admissions lately, BUT I do think it will be something that needs doing at some point!

    I think you need to see what your local hosp and and your cons comes up with jointly, if you don't feel satisfied that you are going to be safe doing the mannitol testing then ask about alternative methods of testing? What other things can they rule out/in in the mean time until your feel well enough to do the Mannitol?

    Don't worry about your GP she ha looked after you for a long time and I suspect that she's just worried about you and how best to improve your health. Try not to stress too much about it all because it's not going to help your chest any.

    Sending massive hugs

    Becca

  • Lynda, I'm not unhappy with my care?! And I'm not unhappy about testing?! Thought I'd made that clear earlier?! Just really bloody apprehensive. And after crazy scary crap going off think that's understandable. Just feel agh.

  • Laura I didn't say you were unhappy with your care, I said that you pave been unhappy at your care being unable to stabilise you. Understandably. I didn't read that you were apprehensive about the tests in your original post, just that you're 'not doing it now as there may be a better route forwards'.

  • Can you think of it as having all the tests done and getting answers ASAP is the quickest way to stop any more scary attacks or at least limit them. Particularly if other factors can be got under control.

    Also, on a different level it sometimes helps to let them do all the tests they want and collate the evidence they need to make their own minds up. You might be surprised at what it shows. The sooner they can iron out any contributing factors the quicker they can get on and treat the asthma rather than worrying what else might be there.

    Em

  • I can understand the apprehension from a diff POV in that it can feel like you're being questioned which can be scary.

    However, if done properly I think it can be helpful. While as you know I'm not severe like you and others on here my asthma is rather weird which can be extremely frustrating at times - not that I want it to be worse but I do wish it would act more normally as I am often fed up with having to explain myself and things like 'yes I know it's odd and I know overtreatment is bad too but if you give X I have found it will help and if you don't then I will just carry on feeling horrible so please at least consider it'.

    I do find it's helpful when I'm doing this with new people, like I had to this last weekend (weird weird attack but they were great with me except for one cons - and even he did treat, he was just incredibly tactless and had no bedside manner) to be able to say 'yes I was tested for VCD, no it's not really an issue'. (Frustratingly, they seemed to have rather more ideas than my usual team but of course couldn't implement as they didn't want to tread on toes -I understand but still agh).

    Perhaps if I had had a proper 'planned admission' done at RBH when better I could have got on top of things even before they got to this level - not the worst but too much for my taste personally! I thought they would be taking a fresh look and a step back but in fact they said 'oh you've had all that before let's not bother', changed their minds and fixated on one thing to the exclusion of others - how not to do it IMO. It sounds however much more like you would be having what Lynda did and what others have actually had at RBH: a proper overview and consideration of all the factors where they really look into what is going on. I would also be apprehensive about having it - not because I'd worry for a moment that any of it would cause a scary attack because I am lucky enough not to have those, more that it can shake things up a bit and that is hard to deal with on top of everything else. On the other hand, with all these scary attacks you're having I think something needs shaking up a bit!

    Hope this makes sense...my brain was stolen at some point last week and has not yet been returned. That last whatever it was/lungs being weird was knackering.

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