New base level

Hey guys

Hope you're all enjoying the bank holiday weekend?

So my asthma is brittle/severe (depending on which dr you speak to but I have symptoms everyday and severe attacks regularly. Am on 40mg of steroids, fostair, qvar, montelukast, aminophyline, home nebs etc etc just to give you an idea)

Its been worsening for 3/4 years (probably longer if I think about it properly but the 3/4 years it impacted massively on life) I see a consultant team in my home town and in Portsmouth, so my gp is not really allowed to play with my meds to much, however it's another month until I see either team. My symptoms have suddenly worsened this last month not like an attack as such but just no relief from the crackley, tightness and breathlessness at all even with 4 hourly nebs. My gp has given me two lots of antibiotics and had bloods done once they made no difference but no infection markers showing. He and I have tried relentlessly to get through to one of my consultants but not having much luck.

My gp said he thinks if I'm not showing improvements by Tuesday his only option is to send me to the hospital for them to admit me in the hope I get seen by the local team and they will get through to the Portsmouth team. I'm guessing partly because I hate the hospital so much I don't go unless I'm having the immently life threatening form of attack (so I'm there about 8-10 times a year) but I feel bad. Like I'm going to be taking a space for no reason other than to get to see the right person. My symptoms are bad, I'm not stupid I know just putting clothes on shouldn't take half an hour and leave me in a state like it does. But because after a bit I can speak in sentences and stuff I know I'm not at attack level if you get me?

Under usual circumstances I can't do much or walk further than a few metres but this is a whole new level, and I'm worried it's my become my new baseline. But if it has then should I waste people's time allowing myself to be admitted? I can't work out if I'm being rational or not to be honest. I think I just need someone to reassure me about any of it. My husband tries but if it was up to him I'd have been in hospital weeks ago and my family and friends just worry so I feel a bit like I can't really pour it out to anyone like I just have. So sorry it's happened to you guys.

Thank you for reading if you got this far.

Xx

6 Replies

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  • Hi cconsta 1 I'll be the first to admit that I leave things too late getting help but if your post was written by another person about themselves what would your advice be to them ? You are not wasting people's time and you are important as the next person go and get the help you need. Xxx

  • Same here. I also don't like to make a fuss (especially when I feel like it's become my normal) but sometimes you just need to go in. You and you're problems are just as important (if not more) than others going to a&e (not breathing is so much worse than say a twisted ankle!). A&e would always prefer us as less severe anyway so it's not worth waiting until we feel it's 'bad' enough!

    Hope you start to feel better soon (and read your post as if it was someone else and see what you would advise!) x

  • Thank you for replying I am always taken back by how understanding and supportive people are on here. I have an apt with my dr at 9.10, I am pretty sure he's going to send me to the hospital but just seeing 2 others opinions has helped me not feel so bad about it.

    To be honest I have struggled and been in a fair bit of pain in my chest this weekend, just want to feel a bit better.

    Thank you again 😀 Xxx

  • Hope you had a good?successful? GP visit today, and that you're happy/feeling better with whatever was decided.

    I was in exactly the same place last week. Saw the GP, discussed a way to try and avoid hosp but ended up going later that day anyway and having to stay for 3 days (he gives me 'rules' when to get help so that I don't just keep trying to deal at home and ODing on meds).

    I often just keep seeing the GP and trying to cope with a new baseline until I just get completely fed up and can't cope anymore (usually week 2/3 of not sleeping and dropping into PF zone red/black (below 33%) multiple times a day) which is when I go to hosp (and usually get admitted cause of how bad I am) but cause I don't feel desperate I feel like I'm making a fuss over nothing when I'm there and like you feel like I'm wasting their time/money the staff are usually great tho and very supportive (in the resp ward anyway and usually elsewhere too!).

    Love that I found this place as previously had been dealing on my own, but it great finding a place with people in a similar boat to mine to get advice/support from!

    Hope you start to feel better soon and that your chest starts to calm down x

  • Thank you, I started getting really bad pain in my chest at the back on Tuesday and by the time I got to the gp I was in a bit of a state as that combined with the exacerbation and no sleep for a few days wasn't plesant. Anyway I ended up the hosp a chest X-ray and some tests later I do now have a chest infection and my lung is inflamed and rubbing on the chest wall hence the pain, as well just general asthma. I'm home with super strength antibiotics and painkillers and increased home nebs etc. They said I'm walking a thin line between home and hospital but because I get stressed when I'm in hospital (unintentionally I just can't relax or sleep and it messes with my already way to high heart rate) and I think to be honest they have a lack of beds, Im home but I have to go back today and tomorrow and have Obs done etc.

    Thank you again for your reply you sound like you handle things the similar to the way I do which reassures me that I'm not alone :-) xx

  • Sorry to hear about Tuesday but fingers crossed the plan works to sort everything out again. I hope the antibiotics work well for you and that everything gets back under control soon! Look after yourself x

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