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Discharge from consultant advise needed ..

Posted , 4 users are following.

anni_04141
anni_04141

So here's my story.. 

2014 began with serve asthma symtoms in and out of hospital/doctors for enebuliser High doses of steriods on and off till it came to the point I couldn't come off them. Stayed on 40mg for a year till I started weaning off due to side affects. Had X-rays chest CT sinus CT all clear 

i have finally got myself down to 4.5mg this is accompanied by spiriva, revlar and tablet and salbutamol. I still have symtoms of coughing up thick mucus daily and shortness of breath. Had a nitric oxide test came out at 50 which I believe is high and they accepted I had esoinphollic inflammation in my airways. 

My my lung function has been stable typically every time Iv had it done it's been a good day. 

I saw saw my consultant tonight who has discharged me and just left me on these inhalers and tablets ok I'm happy I am better than I was 2 years ago but is this my life now ? I am 25 and now thinking is prednisone a part of my life now with no one following it up or monitoring it? I feel ever so let down by the NHS for other medial problems I have and this just adds to it. 

I am on stage 5 treatment should I have just been discharged from. My consultants care so easy? He said my steriods was simply symtom control. Feeling really angry with this whole situation....  

0 likes, 4 replies

4 Replies

  • liz85864
    liz85864 anni_04141

    Posted

    I've been a brittle asthmatic for 46 years Anni, I was diagnosed as a baby and have been in hospital more times than I can count for 2 weeks in intensive care each time. My heart stopped when I was 20 from an asthma attack and I was on 10mg steroid for over a year each day.

    I do not think that you are on the correct drugs. I think you need to go to your doctors and demand to see a Specialist asap.

    I am on a drug called Xolair. Where do you live Anni? I was a guinea pig on Xolair ten years ago. I have to go to St Peters Hospital in Chertsey every two weeks and I have two injections. Since I have been on this drug my asthma has improved beyond recognition. I have a nebuliser at home (look on amazon) and use it whenever I have an asthma attack, but that tends to be once or twice a year now.  If you live anywhere near London or Chertsey I can give you the name of my specialist and you can call her. 

    Good luck and let me know if I can help at all. x

    • anni_04141
      anni_04141 liz85864

      Posted

      Hi Liz, thanks for your reply.

      sounds like you really have had it bad. I wouldn't say my asthma is at that extreme level. Most times Iv been to hosp Iv had nebuliser given steriods and waved out the door. Once I was admitted but discharged later that day after given nebuliser and an injection of some sort which opened my airways and some blood gases done. 

      Problem with mine is its just not controlled I must admit the last 12months have been an improvement but I have also given up with DRs all they say is oh take more steriods and I'm fed up of side affects Iv tried to learnt how to cope with it more. Also have a pulse oximetry so I know if levels drop below 95 will go docs. 

      I have another immune condition which im struggling with at present I go to st guys in London at present but been pushed from consultant to consultant from that. Apparently my spirometery is good and has shown improvement since my problems began. So there happy there is no damage to my lungs. My consultant did mention those drugs last year but said because my Allergy test is normal but apparently it will be on steriods I wouldn't get the approval for these drugs from NICE. 

      As i said I am happy that I am much better than a two years ago where I was having asthma symptoms/attacks every other day. But now Iv been discharged and just left my GP is useless so they will play no point in monitoring. I do live near the London area 30mins by train. With all my other problems I just feel when I walk through the GP door they just see my as a pain in the backside as I am not ever satisfied because the bad experiences Iv faced.  I am Just not happy with being left on stage 5 treatment and basically chucked back out to get on with it while the steriods in long term will just wreck my body. I'm scared to try get off them completely as I'm worried it is all going to happen again. 

    • Aschm32186
      Aschm32186 anni_04141

      Posted

      I have asthma and my pulse oximetry is 91 and the doctors think nothing of it.  No need to rush to the doctors
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