I can't cope with this much more!

[yaf_user681_14340]

Evening all, I hope everyone is ok.

I have just been discharged from hospital, and I'm struggling again (been to acute medicine clinic today for nebs). I've lost count of the number of admissions now but I have just had enough, of bouncing in and out of hospital, of not being able to work...not being able to live a proper life!!

My current medications are

Ventolin

Seretide 500

Cetirizine 10mg

Uniphyllin 400mg bd

Prednisolone 40mg (for the past 4 months)

Montelukast 10mg

Omeprazole 40mg

Adcal D3 bd

Xolair 4 injections 2 weekly

I've tried

Symbicort

Triotropium

Atrovent

Triamcinolone

My cons says that she wants to wait and see if xolair is going to work BUT I've had a trial of xolair before and it didn't really work so it was stopped. The thing is my attacks are getting more severe and it is taking longer to get out of them...had a few near misses from ITU recently and I don't want to land up there. I said to her during my admission last week that I was really beginning to struggle with the instability of my asthma and she just said that I had to be patient and wait for xolair to work. When I was admitted again at the end of last week, I broke. I asked to see my cons but she was busy so I spoke to a lovely reg and told her that I really can't take this anymore either mentally or physically that I really couldn't stand the thought of being sent home just to bounce back in.

This admission as been a disaster, from being transferred to inappropriate wards, to being prescribed the wrong dose of aminophylline and then when the correct dose was prescribed a drug error (which I pointed out to 3 separate nurses before it was sorted) ment that I was still only getting half the dose so my levels were no where near therapeutic. We finally got the right dose and I felt amazing but to was stopped after a couple of hours (so much for 5 continuous days of amino to settle my chest!). Yesterday they stopped my amino and nebs at the same time so by lunch time I was struggling again and I had multidosed. When the cons reviewed me in the afternoon I told her that I didn't feel things were stable and that I really couldn't face another admission as I'm just exhausted....her response ""yes I can hear you wheeze, but go home and think positively and everything will be ok!"" I. Was. Furious. I just can't believe that after crying my eyes out telling them I have nothing left to fight with, that I don't feel anywhere near stable and that I'm just going to land back in, in a few days she still felt that it was appropriate to send me home!

At the acute medicine clinic today they were lovely and have allowed me to pop in for nebs but I'm stuffed over the weekend when it's closed

I'm sorry for the long rant but I have just had more than I can take of it right now!

Thanks for reading

Becca xx

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Becca - Hugs, hugs and just HUGS!!!!! I really feel for you, and I am going to try my best to help, because I see a lot of what happens to me in what is happening to you. Its awful, unbearable and unsustainable. But it might turn into a life story

Always been asthmatic. A couple of ventures up to step 3 between 16-21 (about 2 years in total), fairly well controlled and just the odd course of steroids etc.

Fast forward to this time 3 years ago. Was in my first year teaching. Got a chest infection, then another, then another. Wouldn't shift. Wouldn't go to the doctors as I assumed they'd say it was a virus. fast forward to Jan, this had happened for the 3rd year in a row. PF wouldn't go above 50% ever, felt awful and totally had lost control. Still wouldn't visit the GP. Ended up at the walk in, was very poorly, said I needed to see my gp the following day and go to a&e if my breathing got any worse.

My breathing continued to get worse, was stepped up and stepped up again, my GP got to the point where he was very concerned about my lack of control, the number of urgent appointments I was needing because of how bad my control was and referred me to a consultant. My initial apt was very positive, but my preventer changed to symbicort, which I found difficult when my PF is low. SO no adequate preventer = further loss of control. Hospital admissions began - I left it later, they became more severe. I'd fight for discharge, I'd be let home. Within a few days I'd be ill again and therefore leave getting help later. Control started to slide further and admissions become more severe.

Now I always need Magnesium and usually aminophylline, I have needed CPAP and had far too many ICU reviews and scary ABGS.

This is my story, its unbearable and only hope they get control. The thought that they will is the only thing which keeps me going with it!! I totally understand why you're so upset and frustrated and also feel as though you have been let down! The mistakes that have been made this admission are unforgivable and I think that if a patient will tell their consultant they don't feel stable enough to go home, that should be taken on board. Id you're anything like me, you fight to get home, so fighting for treatment wouldn't happen!!!

My current meds are: Flitiform, Spiriva, Salbutamol (MDI and home nebs), Bricanyl (random, don't use!), montelukast, uniphylline, omeprazole, 40mg pred, and about a million and 1 things which prevent damage to the rest of my body and anti sickness stuff for if necessary! Also usually end up on 1-2 courses of abx a month.

I am really sorry that this has turned into MY life story, but I thought that it might help you with dealing with it to know that you are not on your own and that I have been through some of the same crap you have!! Huge hugs hunni, this is awful, but stick in there; YOU are stronger than the asthma! The asthma will NOT beat you, because you are amazing!!

Take care Becca xxxxxx

[yaf_user681_14340]

Oh Laura, thank you!

I'm normally the same....I just can't wait to get home, fight for it even but I'm so tired and sore that I actually just got to the point of thinking right lets just stick to out as long as is needed and get on top of this properly! And was a bit gobsmaked when they said no.

I've been brittle for years and I had a period similar to this, not as nasty, but with frequent admissions but my cons at the time was great and broke the vicious circle but then he had meds he could try/ step up.

The mess of this admission has really shaken me up with regards to quality of care....the worst bit is I work there and work with these people (on the rare occasion I male it to work) and feel really let down and disappointment by 1) the care the first place and 2) the fact that they didn't do anything to try and prevent it happening again! I couldn't imagine ever treating anyone like that.....ever!

I'm so sorry that your in this situation too and I admire your strength! You too are an amazing person

Thank you so much again

Xx

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I know a consultant who has a policy that if one of his 'young asthmatics' isnt activly fighting to get home, then they're not well enough for discharge (Its hard when tired to be enthusiatic enough to leave), and i think this policy makes sense. I know that there are times when i feel like i should ask to go, even though im not really well enough, and just to put on a brave face, he's the only person who has really picked up on the difference there. I think its disgusting that you were left to be in such an unstable and scary situation, all by yourself, when clearly still not well enough to be home and without any chance of gaining stability or even giving your body a break. The point is i dont think hospital can really give anyone a mental break as lets face it - i consider it a form of torture. But i must admit that physically i feel like the last 5 days i've spent in have given my lungs a bit of a reset. Even not on regular nebs for a couple of days (docs very concerned about HR) hasnt changed this - promt access to PRN nebs made all the difference. Im tired and hungry, yes, but physically feel better than i did. This is not an unreasonable thing to request.

hmmmm....lets be temporarily practical. I assume from your post you dont have home nebs. Any chance you can get hold of GP tommoz and discuss the use of 10 puffs every couple of hours to help keep things at bay a bit more (or nebs - if i misinterpreted - im tired)? Do you have a councellor you can just sit down and rant at every now and then? Im at uni so access to counceeling is fairly quick and easy - no idea how it is done normally, but maybe worth looking into, sometimes its nice to have someone who has all the time in the world just to sit down with you and say 'yes - that sounds blooming awful! you're doing so much better than you give yourself credit for' (because you ARE doing well - i know you dont feel like it - but you are dealing amazingly with a horrendously difficult and scary situation, and you're doing it when you're exhausted!! this would be hard if you'd had a yeasrs break from your breathing!) Is there not another OOH place near you? I assume you've tried 111? Occasionally I have issues with 111 being over-keen to send an ambulance, but that does often mean that the nebs come to me and i dont have to leave my house to get em!! Another potentially more controversial one, and one you'd really have to think about is going to a new hospital that have never met you. I have lots of mates in uni's across the country and brittle enough asthma that visiting people isnt always guaranteed to be hospital free and I do find that new hospitals tend to be more scared by me, and less likely to discharge me unstable as they aren't used to seeing me so ill. I've just been in a weird hospital and actually have managed to get a few new medications and tests looking into the cardiac issues i occasionally have (i think worth investigating as cardiac stuff and breathlessness can be linked). you do face the issue of them not fully appreciating the severity of your condition, the issue of being accused of 'hospital hopping', the weirdness of an unfamiliar team, and the lack of your own cons. its just something to think about (or maybe something to keep as an option in the back of your mind to happen in the future if needed - help you get through this little patch). dfo you get much worse after eating? I hate to be a person who does the 'look what i found made a huge difference to me - it might help you' as i accept that every asthmatic is different and triggered by diffferent things, but i have always found my worst time is right after my large evening meal, but always get wheezy about 15mins after eating, and had been on omeprazole as GP assumed this was a reflux thing, but actually the drug that made the difference to me is Domperidone, which i believe is used in the treatment of CF patients in the same way it helps me, ask Dr Google about that one. just a thought, like i say, suspect it wont do much, but i had gotten to a 'nothing is every going to work - im on all the asthma treatments ever' kind of point, and this isnt really an asthma-y treatment, but made an enourmous difference to both the severity and frequency of my attacks!

when you're feeling a little better it might be worth putting in a 'complaint' not a complianing-y complaint if you have to deal with these people a lot, but just an explanation of how their treatment made you feel. i agree it is madness to send someone home, still wheezy (and therefore it is justifiable to keep them) when they are sat there telling you they are exhausted! i wish i could think of something to say that would help - i really do, as i know the feeling of running out of resources to continue fighting with! much love doll! if there is anything anyone can do let us know xxx

[yaf_user681_30355]

Hi Becca,

Nothing constructive to offer but just wanted to send you (((hugs))) xxx

[yaf_user681_14340]

Thanks guys!

I'm feeling much more level headed and less emotional I don't have home nebs and my cons is very clear that it is NOT going to happen. I do rely very much on multidosing to get me through the day, but I have had access to nebs at the acute medicine clinic at the hospital the past 2 days which is at least keeping home and thankfully the sister on the Acute Admissions ward has said that I can pop in as required over the weekend and if I'm really struggling to go there and then I can skip AnE. They didn't want to let me go this evening as my pf is rubbish but I persuaded them to let me go hehe.

111 I swear just see my number and order an ambulance straight away! But to be fair 9 times of 10 it's probably necessary.

I have to say I don't expect the hospital to do anything about the mental exhaustion but I do feel that if they could give me a break from my lungs that would help Massively. I think it's probably more frustration than anything else.

Yeah I think what I might do is have a quiet word with the ward sister (she's lovely and has a way with the staff that get them to change) and just explain to her what happened so that maybe she can make some constructive change.

Xx