I want to pack my bags and leave a d it's 01.30 in hospital

[Rainbows22]

I have severe brittle asthma diagnosed by the Royal Brompton I 1995 when I ah to give up my beloved nursing. Sine the then flare ups have benn regular with at least 2 long hospital admissions a year . All,with maximum treatment some times even ventilation.

Mu consultants at my local, hspoiital worked with me and we all,discussed all meds and treatments. He was the first to tell,me if it was anxiety based etc.

However this admission a new consultant had started and it's just so different.

I was to,d to butt out if decisions in my care to.

Then today , still,having nebs and not feeling great he said I had 2 options ,go home or because they were making me better transfer to the Brompton , that has so many connectatiins from the past when I had to give up nursing .

I they had crossed off any reliever medication so allows no nebs until a dr had listened to my chest - I waited from 8pm till 2.30 am and was then told I was not wheezy .

But they all say , you have very nasty brittle asthma that we do have to be careful with .

WHAT DO I DO NOW ????

[WheezyAnne]

I have severe Asthma as well, and 3 years ago I was told that the infections had caused permanent damage to my lungs. Have they looked into that? I assume they have done allergy tests? This time of year is horrible for us folks with twitchy lungs because of all the pollen dust and humidity. Have they checked your immunity? Last time I was hospitalised I was kept in an extra week and also told to stay away from people for another. Have you been taught breathing exercises? If you are not wheezing, if your immunity is strong enough, and your chest is not tight, and your peak flow is moving upwards, then talk to them about going home. Have you been on a Pulmonary Rehabilitation Course? I would recommend it. What meds are you on normally?

I would not have survived the last two months without my portable air conditioner, to cool me down and also but more importantly reduce the humidity.

Just curious, prior to 1995, did you still have Asthma, but just not so Severe?

Lots of questions there. Cooling relaxing thoughts on there way. Hope you are feeling better?

[Rainbows22 in reply to WheezyAnne]

Hi , in 1995 was when my asthma got worse and I eneded up having to give up nursing , I have problems with immunity as the steroids I have been on constantly have destroyed mine Si I have to inject immunoglobulins every day and and followed nt the Royal free in London . I have been under the care of rh Brompton but this only changed when my old registrar there became a consultant at my local Hosp but we have moved since then , I have done pul rehab and loved it , in fact we can do it once a year here and I've done it twice , tank you foe your care , I hope you keep we'll m home Tom xx for me xx

[WheezyAnne in reply to Rainbows22]

The Asthma clinic at Addenbrookes in Cambridge were thinking I may need to have something to boost my immunity. However, they say I am borderline and it is very exennsive. At the moment they are trying to build up my immunity to pneumonia, have now had the Pneumovax 3 times in 12 months approx.I will find out in Sept if I have built up enough.

I have also repeated my Pulmonary Rehabilitation and yes they let us do it annually here as well.

Glad you are going home. Take care, and let me know how you get on.

[T3NA in reply to WheezyAnne]

Hi there. On my own asthma journey which I will post about when able but just wondering what immune therapy Addenbrookes have discussed with you. I am under Dr Nasser. Good luck all.

[Rainbows22 in reply to T3NA]

I’m under the royal free who have a special immunodeficiency department . I was have 4 weekly intravenous immunoglobulin replacement therapy but now I do my own treatment with daily s/c injections

[WheezyAnne in reply to T3NA]

My Immunity has now been investigated by the Immunotherapy Clinic and I have been diagnosed with a Common Variable Immune Deficiency Disease. I went to Addenbrookes for IV Immunoglobulin every 3 weeks, I think it was, but now I inject myself under the skin every week. This means I can stay away from the hospital ward. I have just had a terrible time, admitted to A and E Addenbrookes 12 January to 8 February. Nothing worked, none of the nebulisers,, and been on IV Aminophyllin for over 3 weeks,but did nothing. Peak flow still 120\130. Got little Lung Function left, due to multi resistant cultures growing multi resistant organisms. Been referred to Breathing Prevention Service, part of Palliative Care. Scared, cannot stop crying.

[Rainbows22 in reply to WheezyAnne]

Just give it time , I’ve had over a month I iv aminophylline, svebthey tried sub cut terbutaline or iv salbutamol, have in there, sending lots of love, get well wishes and hugs x

[Beth_19]

So sorry you are going through this, doctors and nurses can at times be so horrible. Unfotauntely I don't have any advice I can give you, but I sincerely hope you get sorted.

[freefaller]

I would go back to the Royal Brompton if I were you. Where you are seems to be a bit "iffy"

[Rainbows22 in reply to freefaller]

Thanks , they are now considering referring me there but it just so,frystrating and upsetting , the ward I'm on is usually fantastic