E A A cannot get prognosis

[marktq1]

My wife has got lung fibrosis 2 years since detected is progressing apparanantly it is still not extensive but the inflamation is extremely extensive

She is in hospital now just 2 weeks after a previous stay her sats were 48 when the ambulance came

Her consultant last time gave a proactive diagnosis of acute on chronic hypersensitivity pneumonia is ( E A A) and said finding the allergen is unlikely and even stopping exposure would not make a lot of difference

This time I asked the doctor in charge a senior registrar for a prognosis as I was freaked out reading on the net he says E E A is not a definate diagnosis it cannot be without open lung biopsy which she would not survive

Says cannot give prognosis he was really nice and seemed distressed at not being able to answe r even when I pressed him should my daughter bring her wedding forward from next June he refused to commit

My wife is improving down from 15 litre to 10 of oxygen but not knowing how long whether it is years or months is so upsetting

A friend has suggested that when I submit her Dla form I request a ds1500 and if the doctor fills it in then that will give us some idea of what her prognosis is

Also when I asked what she might have if it is not E A A again he said he would not specu

Late he would not say whether it would be good or bad news if it turns out to be something different

We just don't know where we stand

[Hidden]

sorry to read of your problems , and sincerly hope that you recieve answer to you and your wifes benifit. on the subject of DS1500 read the following, speak with your doctor first. may be a chat with a member of the BLF staff will be some assistance wish you well for the future.

gpnotebook.co.uk/simplepage...

[marktq1 in reply to Hidden]

Thank you for your advice will do as you suggest

[shell13]

Hi Mark, this must so distressing for you and your family, is your wife at a local hospital? if so have u tried asking if you can get a second opinion at a specialist hospital eg The Royal Brompton in London.

[marktq1 in reply to shell13]

Thank you for your message she is at a local hospital in Devon and is an inpatient at the moment they have done many tests bloods X-rays ct scan etc but the last doctor told me they cannot be certain without an open chest biopsy which she cannot have as it is too dangerous The E A A that they think she has is very rareesp in chronic form more so when there is no obvious allergen the last doctor says her results are consistent with this diagnosis but there are inconsistencies and some things in his opinion don't fit as a result he can not give us any sort of prognosis

[shell13]

I would ask to be referred to the Royal Brompton in London they are the one of worlds best in respiratory conditions, they have treatments that local hospitals dont, there is no harm in asking them, they should not refuse, they even provide transport to the hospital if your wife is too unwell for public transport.

[marktq1 in reply to shell13]

Thank you will discuss this idea with her GP

But do not think moving her right now is a good idea , she does not want to go yet , as she wants to be near childeren

I have just heard they have upped her predinesterone to 115 mg a day and she is back up to 15 litres oxygen , trouble is the steroids are causing havoc with her blood sugar level which reached 40 yesterday

Have heard about new drug perfinex which may help not available on nhs til next year tho

Would cost about £60 a week which is not nearly as bad as I feared

Anyway way thank you very much for your kind support and We will just have to take it a day at a time

[Lillytan]

Hi...I've just read your posts and am wondering how your wife is doing and if anyone ever finally came up with a definitive answer? i have recently been told I might have hypersensitivity pneumonitis and am awaiting an appointment with a surgeon to look into having a lung biopsy...my sats drop to 74 at times but mostly hold at 86. But like you asked about your wife, I wonder just what this is all about .... My consultant has classed me as a "puzzle" lol I hope you guys are doing well and do have a better understanding of what is going on!