What next? (need some advice)

Hi everyone, first post.. And it's on behalf of my Fiance who ive been with for 7 years now.

This is going to be a longish post but I'm hoping for some help finally! from anyone!.

My partner (Diane) is her name, has had asthma since her early teens (she's 24 now) and it's always been pretty severe. However she did eventually receive an operation to remove polyps from her nose which helped her for all of a month and then she basically went downhill again, she has always struggled to breathe and when she's in her worst state she constantly has a tight chest cough really severely and can't walk to the kitchen without being out of breath.

She takes so many tablets every day im talking 6 or 7 on a morning and 3 on a night, this has went on for years and i think personally she is just being fobbed off by the hospital etc. She did get accepted for the Xolair injection which actually did seem to help for a few months but now it simply doesn't help. She hasn't seen a consultant for around 3 years now and everytime she mensions to the nurse who gives her the Xolair she just ignores her and sends her on her way.

It's getting to the point now where she can't take it anymore. she did lose 4 stone at one point (she takes steroids everyday) as pretty much all of you will of guessed, however she ended up pregnant with our beautiful daughter who is 2 now, she is still on all of the tablets she takes which don't help to be honest. and weve finally got a doctor to write a letter of complaint to the hospital about the consultant business.

Anyway to get to my point, were stuck... we have no clue where to go now, we know Xolair isnt working her tablets dont help and we just simply dont know who to turn to or where to go from here for some help for her. shes a perfectly healthy 24 year old woman (yes shes gained the weight she lost back now thanks to the constant cycle of steroids) this is baffling.

Thank you for any help you may suggest!! we really appreciate anything that may help her out at all.

Stuart

5 Replies

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  • I am so sorry that Diane is suffering so much with her asthma and that none of her medication seems to be working.

    Has Diane made an appointment to see her GP to discuss these issues?

  • Hello!

    Sorry life is so tough right now, I cam feel (and share) your frustration.

    I would say a good starting point would be to speak to the fab AUK nurses on thr free phone number. Whrn I was at the end of my tether and didn't know what to ask for or do next, they had some great suggestions.

    I can't believe your wife hasn't seen a consultant! That is truly outrageous but I'm glad your doctor is complaining.

    I would say though could it be worth your wife's doctor trying to refer her to one of the specialist centres like the royal Brompton hospital or one of the other two difficult asthma centres in England? If she's already tried xolair I'm guessing she's tried most other things too so may be time to.get some super duper specialist help.

    Take care

    X

  • I'm really supprised that Diane's not seen a consultant when she's on that level of meds. I would suggest the same as Angelica. A referal elsewhere might be the what's needed and a fresh perspective to change meds, hopefully for the better.

    I'm sorry to hear you're both going through this tough time and it's been ongoing for quite some time. I hope you find a solution soon. x

  • I would go drfosterhealth.co.uk/ find a different respiroty consultant from your area , go armed with the name to your GP and ask for a referal she should be being seen quite often while she is so poorly xx

  • Have you considered asking for a referral from your GP to a specialist respiratory hospital, like Papworth (nr Cambridge), RBH etc? My local hospital respiratory consultant was awful and my GP simply referred me to a specialist hospital. Once I had been there (I go monthly) I ditched the local hospital, it was a waste of time...

    Its horrid having to go through all that...

    take care

    Lynda :)

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