Id cry, but I dont have enough breath :-(

Saw my lovely cons yesterday, 1st time since my 2 admissions in 5 days the other week. I had gone prepared for admission, and willing to try methotrexate and subcut. She says I am now out of her range so to speak and is referring me back to the one I had during my long admission a few mths ago. I got very upset and cross and I admit a bit unreasonable, because Im feeling so desperate now. All I can think about is asthma, anything I want to do it dependant on my asthma. My housemate even came in to my room..

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  • ...at 5am because I was coughing so hard and she was worried about me. I dont know when I will get to see him, and have been told to carry on as I am til then. But I can hardly cope just now! Im tempted to either whack the pred up and try to get some control, or miss some meds and guarantee and urgent admission within a day or so and therefore see him fast. Im just so fed up.

  • Agh, just HUGE hugs!!! I am NOT in the same position cons wise, but do understand asthma ruling your life :-( and the emotional toll the admissions take on you!!

    I'd be tempted by choice 1 to be fair, anything to avoid an admission!! Though I totally get what you're saying with missing meds for an urgent admission ... theres just no guarantee that you would get to see the cons you want!!!

    Stick in there ... thinking of you xxx

  • please dont do anything so dangerous as stopping meds... you can never predict what the outcome of that will be for you... whacking pred up to gain some control sounds reasonable in your situation, its horrid when you feel so out of control and desperate :( big hugs xx

  • Tempted though I am, I won't stop my regular meds. Not quite sure what I would do if I did get worse at this point though - usually yes I'd do all I can to avoid admission, and the other week I intentionally went to a different hospital as I knew if I went to my proper one Id be stuck with a long admission (I have been promised!) but I am at the point now where I simply cannot carry on like I am at present.

    I really like my usual consultant, shes very matter of fact but friendly too, and when I was in she popped up to see me whenever she could, even though I wasn't under her care at that point. Rationally, I know she is doing right by me by admitting she cannot sort my asthma and passing me to someone who hopefully can, but I cant help but feel disappointed. It doesnt help that the one I will now be seeing is the one who suggested I might want to consider suicide!!!! I know he is good, I know he has done much of the recent research into brittle/difficult asthma and as such has put me on drugs that most of the other drs Ive seen have never even heard of, and I know that with all this experience, him telling me I am in his 3 most brittle means yes I probably am out of most drs range now, but I still feel gutted.

  • Well, I sent a desperate email to my lovely resp nurse, telling her I was on the brink of stopping everything so I ended up bad enough they HAD to do something...and it seems thats the 'Magic word'!!! I have had emails from her and my cons (the nice one) and a phone call from one of the other resp drs who I don't know, and they are arranging admission for me for next week, probably Wednesday. I will be in for the duration, however long that might be, but I'm at the point now of being willing to accept it. I cannot carry on as I am, and cannot fully accept this is as good as its going to get until I have tried absolutely all the options. Still feeling lousy, and tearful, and frustrated, but theres a tiny spark of light now. Just a shame you have to get to breaking point first.

  • Well done Sparkly - it is sad that you have to get to drowning point before the right steps are taken, but it's really, really good that you alerted them to how desperate you are, and they're doing the right things to sort you out. Hang in there til next week now!

  • Hiya hun, I really REALLY hope they can get some control for you! This is no way to live and something needs to give and it can't be you!! You're young, fit and healthy apart from this being thrown at you!

    Have you any idea what they are going to do while you're in? At least you have the time to mentally prepare now as well as the physical aspect of going away!!

    Hugs! xxx

  • Yes, I'm trying to get myself practically and mentally prepared, I truely am a terrible patient - I dont envy the staff who will be looking after me!

    I am going in determined to be well behaved (hmmmm!) but also quite firm about how I want things to be. I am not happy to be there just for steroid reduction for example, which seems to be all they ever talk about! Do they think I take them for fun???? Get me stable first, get my PF back to 80% or so, and then I will gladly reduce, and hopefully start losing some of this blubber Ive put on, and the cats will know their food is safe!! (No, I havent actually eaten the cat food, but its tempting sometimes).

    I am going to push for subcut, because I keep being told theres nothing left to try but there is - this. I know it treats the symptoms rather than preventing them, but as they have not been able to find anything to prevent it, I'll settle for symptomatic relief. I'm hoping they will also get the stomach acidity test done while I am in, I'll feel slightly less self concious having a tube hanging out of my nose for 24hrs in hospital than I would getting the bus to the hospital and back!

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