Hello everyone I hope you are all in relatively good shape 👍
I will try to keep this as succinct as possible as it's a long story.
June 2021 admitted to hospital with severe breathing difficulty, after many blood tests, ECG, x-ray, CT scan etc etc oh and a bronchostomy (which wasn't fun at all) I was diagnosed with Acute Hypersensitivity pneumonitis.... bronchostomy results indicated Aspergillus.....so 15 days in hospital 10 days on oxygen and what seemed like permanent steroid and antibiotics via IV. Then discharged whith big bag of oral steroids etc etc etc for about 3 months. Had a follow up x-ray and promise of CT scan (but that never happened) and lung function test, consultant said results were "acceptable" and "you have made a remarkable recovery" then discharged but with no advice as to how much exercise etc or what to expect regarding recovery......I am ok ish and thankful to still be here however I have never felt my old self i have a general feeling of malaise and get breathless on mild exertion and if I get at all stressed. So, has anyone got any experience of AHP and or can offer any words of wisdom,
PS - I intend to contact my GP end of may (which will be twelve months since I contracted the infection) if things have not improved.
Many thanks - Ian
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spk64
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Hi Ian if I were you I would be contacting your GP now especially as you still don't feel totally well. Hope this helps and welcome to the site please keep us updated on how you are, have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻
Hi and welcome Ian. Afraid I have no knowledge of Hypersensitivity pneumonitis but as Bernadette said, I wouldn't be waiting so long to speak to my GP were I you. Best wishes Carole
Good morning Ian,Welcome to this forum. Your condition has been mentioned occasionally by other members and I am sure they will pop up with their experiences. It has been a very difficult time for you. Severe lung infections can take a long time to resolve. But I do think you will have to be a bit insistent. I hope your GP is responsive. Maybe keep a diary of your symptoms so that you can be clear with her/him?
Hi thereI have chronic hypersensitivity pneumonitis (cause unknown but dust & mould spores-are a problem ) with the symptoms you describe. Medics really don’t know how to treat it….
Currently after worsening symptoms I’m on long term steroids (down to 10mg now)
I’m seen by a good team at Nottingham City Hospital with regular Ct scans as it has caused fibrosis. But really it’s about finding ways to stay as well as I can for as long as I can but not pushing myself too hard.
Regular gentle exercise is good
I am still doing the things I enjoy but slower & less often.
You should definitely see your gp now & push for referral & Ct scan so that your care is taken over by a specialist team.
Hi Ian and welcome to the site. I dont know anything about CHP but as with all lung diseases , if you smoke then now is the time to give up, eat a good diet and take gentle exercise, whjpich may be easier once the weather turns. As other members have said dont delay in speaking to your gp x
Hi and welcome to the site. I don’t have any advice except to see your GO as soon as possible and written down your symptoms and how your daily life is at the moment. Tawny 10 has given you good advice from her own experience with it. Take care xx
Hi Spk64. I was in hospital nearly four years ago with pneumonia and Aspergillosis. I was sent home after the pneumonia and I kept saying about the breathlessness especially first thing in the morning. I passed out one morning because I couldn’t breathe. I went back into hospital and then they discovered the Aspergillosis.
The point I’m making is although I didn’t know it at the time. The pneumonia and Aspergillosis caused scarring of the Interstitium. I had my suspicions and they were compnfirmed yesterday that I have Pulmonary fibrosis. So what I’m saying is if you’re not happy with how you are go back and make sure you are listened to.
You need that scan . An xray doesn’t show up everything. Oh and ask if you should take any calcium tablets. I’ve got seven spinal fractures due to one being a woman and two because of steroids. Get plenty of sunshine when you can too.
Hi spk64 I’m sorry I can’t help you with condition but I do agree with others I would get in touch sooner to try and find out what can be done. Hope you start to feel more like yourself soon. Take care Barbsx
Hi Ian, welcome to the forum. I can't help with your diagnosis but I agree with the other members that it would be advisable to speak to your GP regarding your concerns. you certainly need guidelines to go forward with your condition. You could also ask about Pulmonary Rehabilitation which would help with exercise, diet and good support. All the best for getting action from your GP x
Thank you everyone, what a nice bunch you are 😁👍The NHS as we all know we're under a lot of pressure so I assumed that the lack of follow up care or advice was down to that plus I have never been ill before so didn't really know what to expect anyway....it was day 3 in hospital before a consultant realised I hadn't been prescribed any medication as he presumably thought one of the others had done so, once they realised they were chucking all sorts at me....I think it was the day after when the wife got the phone call advising that things were not too rosie.....I had a nurse state "oh your the chap who has three of our top consultants baffled" err really 😯 numerous nurses and the odd doctor stuck there head around the door exclaiming "oh, your still here" 🙄 oh and on about day seven I thought they were late with my steroid iv as it was now about 11pm, when I enquired I was told that they had run out and there was none available anywhere in the north west ..so, I started medication three days late plus missed a dose 😯 oh and none of the consultants could decide if I should have my 2nd covid vaccine or not. Eventually someone decided I probably should so I did. It seems to me that it's a condition that is so rare even the specialists don't know much about it although the first consultant i saw did say that there are many causes for it and the symptoms vary widely....
What a very confusing experience, doesn't exactly boost your confidence. Consensus of opinion here seems to be that you should get an appointment or phone consult with your GP and have a good discussion with him about your future care. Keep in touch and let us know how you get on.
Thank you CDP 👍Exactly, very confusing but as I say I have never experienced any type of illness before in fact the number of times I have been to a GP in my 57 yrs you could probably count on two hands so dont really know what to expect by way of after care etc etc..
Oh, and another weird symptom is that ever since the diagnosis (and or the bronchostomy 🙄) my voice has been quite hoarse as though i need to cough however it's usually unproductive, no idea what that's all about.....anyone had anything similar??
Can't explain that I'm afraid unless the bronchoscopy has left some irritation of your vocal chords. Make a list of queries and book a consultation with your GP sooner rather than later. Best wishes
Welcome to the forum, Ian. You definitely have needs which should be addressed PDQ. I'm afraid one thing I've learnt on this forum is that if you don't make a fuss, you don't get nothing. Good luck. PS I found pulmonary rehab helped me a lot.
Well it took a while and a lot of nagging from the wife but I eventually contacted my GP Nd had a telephone consultation, I explained my ongoing SOB at times and occasional feeling of malaise, he had read my notes and said that I should have had a CT scan and that it appears that I had been lost in the system 🙄 went on to say that "given how ill I was I am almost certain to have some scarring which will reduce my lung capacity" ....unquote. Said he was going to arrange a CT scan so we know exactly what we are dealing with.... further updates to follow.
Good evening.Update, had the CT scan and saw consultant last week. He says that the scan shows "some" damage to the lungs which explains the occasional breathlessness, he also noticed with his stethoscope that I still have some crackling he does not think that I can expect any further improvement so it's a case of living with it, he has prescribed an inhaler for use and and when required but I haven't got it yet . He reiterated that I have made a remarkable recovery.
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