Newly diagnosed EAA

Hi Liz,

I have not come across this variation of alveolitis. Have your medics said it is one of the Interstitial Lung diseases?

I have Idiopathic Pulmonary Fibrosis but apparently it used to be known as alveolitis and my prognosis is not now brilliant because it took so long for my GP to diagnose - we are talking several years - by the time I had been given a diagnosis my lungs were full of scar tissue and this has resulted in permanent damage. Once diagnosed, I was started on steroids and these have now been reduced but I am still on them and have to have oxygen supply 24/7. I absolutely do not want to alarm you BUT I found you have to question the docs and consultants very closely to get the full story. It sounds like your medics are saying that your condition is temporary and with treatment you will make a full recovery but do not take anything at face value. If I had received appropriate treatment in the early stages I do not think I would ever have got to be this bad.

NB Learninng to breathe correctly is essential and I had great help from a yoga therapist (not all the fancy exercises and weird positions) who taught me how to use my lungs to the best they could be. You will see more about me on my patient profile and under the Alveolitis and pulmonary fibrosis topic headings. Hope you make a full recovery as soon as possible. Please keep us posted with your progress. It seems to me that if we could all share our experiences and the knowledge could be pooled and researched we could all be helped.

love and prayers

Storyteller

Thanks for your reply. As you say it is so helpful to be able to talk to othe people about this condition. This is the only website I have found for sharing info. I had a long chat with a nurse trained in EAA who worked for the British Lung Foundation helpline and that was very useful. I do worry that the steroids are not making a huge difference and I find the morniings especially difficult. I am hoping to go back to work full time next week but really I will not do much until lunchtime when the steroids start to work. I had a CT scan yesteday so hopng for more info in 10 days. My boss at work is being a bit funny as he thinks I have brought this on myself (if it is due to the rabbits hay) so feel awkward about not going back to work but at the same time I know I cannot push myself at the mo so I will only do what I can do. We have started buying dust-free hay and straw which is used for feeding horses with EAA so guess if it is good enough for them it should be OK for me who never goes near it anyway. I know everyone thinks we should get rid of the rabbit but feel I need to give it one last chance and get the final allergy results first. I am waiting for precipitating antibody results for rabbit and all the famers lung allergy test but that takes 8 weeks for results so in limbo for a bit longer yet. My other worry is that it may be where i work. I work in a lab and glasshouse and deal with a lot of chemicals, plants and pesticides so the occupational health bod is seeing me next week. As with you I think the key is knowing if there is any scar tissue present so that will be my first question once the CT results are in. What do you think caused your condition and how long before it was treated? Sorry for all the questions but I am sure you can appreiciate how nice it is to share this experience with someone.

Thanks for your thoughts

Liz

Hi Liz

I was diagnosed with EAA over 10 years ago, more recently they have re-diagnosed hypersensitivity pneumonitis - unfortunately during all this time they have never quite been able to put their finger on the cause, many many tests have been done!!

I would agree with storyteller and say that you need to keep pressing your doctors/consultants for answers and explanations.

I've recently had further tests and a new consultant has been introduced to me and is starting to explore other medication, I've been on Prednisilone ever since I was first diagnosed but have recently started MMF (mycophenalate mofetil, not sure of spelling!).

Basically just over 10 yrs ago I started to notice breathlessness, this was investigated and a medical professional told me this was all in my head (no, I'm serious) and I was discharged, however he did refer me onto a psychiatrist. This person said my symptons were caused by stress and we talked a lot and he prescribed anti depressants, which made me not care so much that I wasn't breathing so well. During this time I was seeing my GP on a regular basis, and whilst very supportive she took what the consultants were saying at face value, I was seeing her regularly and saying that I just couldn't breathe properly and couldn't take a good lungful of air in, I was also losing a lot of weight, didn't want to eat, constantly felt sick and frequently vomited, was very fatigued. Eventually I had to stop working, had no energy at all, about three months later I was rushed to hospital, my lungs had collapsed. I spent 2 weeks in intensive care, and just over 2 months in hospital, during this time my family were called in twice to say their goodbyes.

I could be very angry at the first consultant who diagnosed \"NOTHING\" but feel that this would be a waste of my energy and time.

My lungs after discharge were at 60% capacity, which is so much better than the drs could ever have hoped for, so for this I was grateful, however over the years this has deteriorated, and currently I'm about a third capacity, so not doing so well just now, not much energy, get tired very easily, can't do cold weather at all, struggle to walk far, can't do stairs or any incline without suffering from severe breathlessness. But I'm still hopeful as I'm only 39 and am married to a wonderful man and have a beautiful 17 year old daughter and a very loving, caring extended family.

On a positive note, I still manage to work full time, an office based job so no exertion required and I can still use my brain just fine!! I enjoy holidays and going out and still have a reasonable lifestyle despite the limitations of my health.

More recently as my lung function has deteriorated I've been introduced to the lung transplant unit at a local hospital, they are very nice people and I hope I never require their services, as the MMF is seeming to work quite well, I've found that I recover faster from breathlessness since starting to use it. I've been told not to expect to regain any lung function, but the signs are promising.

I've been asked many times about whether I come into contact with animals, birds, compost, hay etc - and none of these seem to apply to me, more recently I've been asked to stop using hair dyes - however my drs are quick to say that this would not have been the cause of my illness, which I know as I was not using them 10 years ago, I didn't need to!!

I would not want to alarm you at all - and I'm pleased for you that your consultants/doctors are able to find a cause for your illness, and I hope very much that after eliminating the cause you make a speedy and full recovery. Best regards.

Like Long Suffering I was also told by my gp I had stress and that basically I was imagining being breathless, even when I explained that I couldn't even empty the dishwasher without getting extremely breathless. He said what I was experiencing was like panic attacks.

A month later after a rotten christmas we paid for me to see a private respiratory specialist who said my oxygen levels were so low I had to rest and do absolutely nothing.

The cause of my EAA are ferol pigeons to the rear of my office. I have found it very hard to get anyone to take me seriously or even give advice on how to protect myself. I have no choice but to go to work as we actually own our own building and in the current climate noone would want to buy it to allow us to move. Also I am self employed so the cost to my business has now given me stress which I'm sure won't be helping!!

We have sanitised the inside and sealed all windows to the rear which has helped with the coughing/vomiting at night but the cough and breathless the rest of the time is the same.

The private health guy was great and we very quickly had a ct scan to confirm the diagnosis of EAA and he then arranged for me to get a biopsy done on an NHS referal. Since then things have ground to a halt. I am still awaiting confirmation that it is the pigeons and my NHS consultancy is not til May (having been put back from April).

I really worry what is happening to my lungs in the meantime and how this will affect my health long term. I hate going to work as I do not know whether I am still exposing myself to low levels of the allergens and so still causing damage.

It is helpful to read what other people have gone through as up to now I have felt like the only one ever to get this!!

When I was 33 I kept two parakeets for six weeks, after only a week or so I developed a cough and shortness of breath. I thought it was just a virus but I became so bad I could hardly walk or go upstairs. I was so bad that I ended up in hospital. There I was diagnosed with Extrinsic Allergic Alveolitis caused by the parakeets. I was treated with a high dose of steroids for six months and declared fit.

Twenty years later I suddenly had trouble breathing after exersion and kept getting chest infections. I went to my GP frequently but was told there was nothing wrong with me, silly me I believed him. Then my fingernails started clubbing I didn't connect it to my breathlessness. I went to my GP and even she hadn't seen clubbed fingernails before. She investigated it and sent me for a chest x-ray. It came back that I had bronchectisis, not a life threatening condition but my GP sent me to see a specialist who arranged for me to have a CT scan, sputum and blood tests. The scan came back as fibrosis of the lung. I was then sent to Guys Hospital to have an open lung biopsy. I was diagnose with Chronic Hypersensitivity Pneumonitis (CHP). HP is another word for Extrinsic Allergic Alveolitis only this time it was chronic. After 20 years it had come back only much worse, I couldn't think why, my only contact with an allergen was the wood pigeons that had recently moved into our garden. Every breath I took was laboured and I couldn't see a way back from it. My consultant prescribed steroids but this time I had a bad reaction from them, she then prescribed Azathioprine which within three months gave me drug induced hepatitis. She took me off all drugs for three months to let my liver recover and then put me on a drug called Mycophenolate mofetil. It has changed my life, I am actually improving.I never hoped to improve, all I hoped for was that I wouldn't deteriorate. Every lung funtion test I have is better than the last. I can breath a lot easier now and can do a lot of everyday things such as climb stairs and dance. I know I will never fully recover but there is at least hope that there is a future for me.

I advise anyone who has a diagnosis of EAA to get rid of the offending allergen be it a pet or anything else. To the lady with the rabbit, get rid of the hay it is mold in the hay that causes the damage not dust from it. Don't take chances, this is your life. I want to be around to see my grandchildren grow up.