A little jumble of questions seeking advice

Hi I'm a newbie here, was just seeing if anyone has any advice on how to survive this winter!? My chest is never any good really but has been really quite bad since September, I've only been admitted 3 times since then mind, and last week I was in twice getting sent home once I started breathing ok again. I rang my asthma specialist nurse at the hospital today and she said to just keep taking prednisolone (I'm not on it permanently but have a supply at home for when I need, this is my 5th lot since the end of September) I usually get a week of feeling great when on pred but that hasn't been happening, I'm on nebs every two hours, I'm just exhausted and fed up. I try to do everything that they tell you but I feel like I just get sent on my way as I don't kick up a fuss. When I rang up the asthma nurse today her advice was keep taking the pred for another week then if I don't improve maybe they'll find me an appointment but they are very busy looking after really poorly people at the moment, and when I asked if there was any news about Xolair (which I was told a few months ago that my IgE had come down enough for the first time ever for me to be able to start it) she said they still haven't heard anything and that it's probably going to be a year before I get on the treatment that's if the treatment will still be available as it's looking at being cutting, this made me so so so very sad, as the thought of going on to a treatment that may actually help was the only thing keeping me going and I had been told that it was going to be in the New Year, is anyone else waiting to go onto Xolair? Have you been waiting long?

One last thing is anyone on atrovent nebules? I was sent home with some from this weekends hospital admission but usually only have salbutamol, there was no instruction on how often to take them or if to mix with my salbutamol nebs, just wondering if anyone knows what the difference is?

I feel like I am just having a little bit of a hard time at the moment, I know there are a lot poorlier people than me but it doesn't quite make you feel any better when you feel so rotten, which I know is selfish I'm sorry.

Well if there is anyone out there that has found anything to help tackle the winter, or has anything to mention about the other treatments and stuff be great to hear from you, you've probably all discussed all this loads already I'm sorry if that is the case.

x

2 Replies

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  • Hi

    Can't help much with your questions but just wanted to say your not being selfish at all, I am not as poorly as you but still feel a bit hard done by at times. Not being able to breathe just making a cup of tea is enough to bring anyone down.

    I have been given atrovent nebs in hospital mixed with my salbutamol ones but don't have home nebs so don't have any more info than that. Hopefully someone will be along soon who can help with your questions.

    Take care of you self.

    Ellen

  • Hiya

    Sorry you're having a tough time.

    I have home nebs and do have a supply of atrovent at home. Atrovent causes your heart rate to go up as does salbutamol. I know my team do not like me taking to much atrovent at home. When I take it I do sometimes mix it with salbutamol that's fine, or you could alternate it maybe by taking salbutamol and after a couple of hrs take atrovent. It's probably a good idea to ask your nurse or you could give the lovely AUK nurses a ring on the number on this site.

    Try and keep smiling and get plenty of rest.

    Lisa x

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