Frustrated! Uncommon disease and lack of understanding at hospital when having exacerbation of condition

I have Hypersensitivity Pneumonitis - otherwise known as Extensic Allegic Alveolitis! Have been on Prednisolone for over 2 years now and gradually reduced down to 7.5mg daily since February this year. It has become clear that this dose doesn't help my condition as much as 15mg did. On that dose, I was managing quite well. So - since the reduction, I have had several Acute Phases which have happened during the night where my breathing becomes laboured. On two occasions I have taken myself to A&E where after a while, all readings are ok and they send me off home with instructions to increase the Prednisolone etc for a week.

I kind of got the feeling that there wasn't much to be done when this happens, so going to A&E in the middle of the night seemed pointless. 6 weeks ago I had another episode, this time during the day and went to my GP who could clearly see the distress I was in, but again - increase the steroids. She did however manage to bring forward the appointment with my Consultant from the end of December to next week (12th). 3 weeks ago I had a chest infection and went on antibiotics, cleared up and all seemed ok. Then on Tuesday this week, the cough (dry and always there as part of the disease) seemed worse, and the effort was wearing me out. By 2am my breathing was very tight and seemed worse than ever - so - this time I called 111. They then sent an ambulance, put me on a nebuliser and decided to take me to hospital.

What interests me is that whenever asked what my condition is, not many if any, have head of it. Therefore they don't seem to understand my symptoms when acute and how I'm feeling, even though some readings seem normal.

Proof of this was on Tuesday at the hospital. After having usual obs taken, and bloods that were left sitting on the tray, I was finally seen 2 hours later (it was a busy night). The Doctor examined me, asked the usual questions, went off to speak to his senior, then came back and said all seemed ok and I could go home, knowing I would be seeing my Consultant on Monday.

What I wasn't impressed with was that nothing happened to the bloods, I didn't have an X-Ray as is normal when admitted before - and that as the day went on, I started coughing up stuff which was obvious to me, that there was an infection. So, off I go to see my GP who confirmed that there was indeed a nasty chest infection going on. Had the Doctor at the hospital done his job properly, this would have been picked up. I will definatley be mentioning it when I see the consultant on Monday, but this experience at the hospital has made me feel that I am perhaps looked on as a time waster - all because they don't understand my condition. Perhaps if I had COPD or similar, it would be different.....

Sorry for rattling on, but I wondered if others have had similar experiences and are left feeling just as frustrated?

11 Replies

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  • Hi Jayenne I am sorry you are faced with such ignorance by the medical profession. I guess it's because copd is much more common than other lung diseases but it doesn't excuse it does it? To be honest I don't think any lung disease, copd included, is taken seriously enough and not enough resources are pumped into the system to help all of us.

    At least you don't have the 'blame' attitude towards you as most copders are ex-smokers. There is still a bit of an attitude of 'We deserve it for smoking' and are treated accordingly. And you don't have the guilt the ex-smokers feel. I wish you all the best. x

  • Thanks Coughalot. You're right about the blame attitude and it's not fair or right. Perhaps Tuesday was just a 'bad day at the office' for some of them.

  • So sorry this if happening to you. I am sure many of us have experienced stuff like this both at GPs and A and E by some staff. On the other hand we have also experienced excellent medics. This is much worse when you have one of the lesser known lung conditions. You have to be your own advocate - it's not how it should be but I am afraid on many occasions it is. You are the expert at living with this condition and can help educate some medics when there is a gap in their knowledge but in a tactful way as you need them onside.

    Hope things improve for you.

    love cx

  • Thanks Cofdop. I think I may have experienced just one excellent Doctor at the hospital so far, but most are Junior Doctors and tend to scratch their heads. I understand it's difficult when met with an unusual lung condition, but it's the thought that I seem to be a 'time-waster' that bothers me most. You're right about educating some medics - they do listen when explaining the condition.

  • Hi Jayenne, I have the same lung condition ad yourself, I have had this condition for 5 years, I also suffer the same issues, I take antibiotics three times per week, I had been diagnosed with this condition after I had a really bad but of swine flu and pneumonia, I had a broncholoscopy to determine the cause and the tests were inconclusive, it is frustrating as I have never came across anyone with the condition except on this forum, I do suffer from exacerbations frequently so I understand your frustration, take care xx

  • Thanks fan58 - we are definitely a rare breed aren't we. I suppose I'm still learning to live with the condition 4 years on. Mine was diagnosed by VATS and gradually improved over 18 months on steroids. I found 15mg per day suited me just fine and I was able to do a little more without too much effect. However, now on 7.5mg for the last 8 months thee has been a significant change. Perhaps because I push myself too much, puffing etc then getting back to normal 10 minutes later, has probably done me more harm than good - so on that reflection I am stopping struggling to do the things I can no longer do in reality. Being knocked out and made to do nothing for the last 4 days has proved that as I no longer have the 'burning' lungs and discomfort on exertion. You diagnosis is interesting, getting it after Swine Flu and Pneumonia - it's difficult for the experts to pin-point exactly what the causes are in most cases. Take care.

  • Ssi too have chronic extrinsic allergic alveolitis for 15 months also reduced to 7.5

    Steroids also 100 mg cyclophosimide was also on 100 mg azathioprine which affected my liver. I agree 90 per cent of people including nurses have no experience of this condition

    Do you know what caused yours

    Regards and good luck

  • Hi Budleigh4

    I'm interested to hear about your medication along with the steroids. I'll look that up. I'm sure I should be on more medication, but then Mondays visit to the Consultant may just involve that.

    No definite cause is given, but I'm told that birds could be the cause. From childhood I have grown up around budgies - just one at a time - in the house, right up until 7 years ago. At one point I used to have frightening coughing spasms, but at the time I was told it was mild asthma - odd that since the last bid I had, I have not had one coughing spasm like it since! I tend to shy away from bids now - especially Pidgeons (Pidgeon Fanciers Lung). It's an off one that's for sure.

  • Hi Jayenne,

    I also have extrinsic allergic alveolitis. I have had it since I was 16 years old (I'm now 39) and have been on 5 mg of prednisolone daily for most of those 23 years! Whenever I get a chest infection I go to my GP who prescribes antibiotics and a high dose of steroids for a week.

    I've just changed GP and the new one has been so much better - referring me to the Community Respiratory Service who have also been great.

    I was recently admitted to hospital with shortness of breath and very low oxygen levels and while one respiratory Consultant was keen to send me home, one of the others was fantastic, referring me to experts in ILD and Pulmonary Hypertension at the Brompton.

    Whereabouts do you live? Which hospital do you go to? :)

  • Hi Dons-2

    Crikey! You've had this since a young age. What was the cause of yours? I know once we've got it, it's there for life... Glad that you've got the right support from services.

    I'm in Birmingham, and very lucky to be in under the care of the Queen Elizabeth Hospital (University Hospital Birmingham). Excellent care from the Consultants, just wish others were more knowledgeable with this condition.

  • Hi folks it has been good to read your posts regarding Eaa it has been a help.

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