Hello folks. I'm new on here and finding reading through Questions and Blogs really helpful, and know that I'm not alone!
I just wondered if there are any of you out there that also suffer from EAA, and how you cope with your symptoms, etc.
I have always had a niggling cough, clearing my throat, for many years and diagnosed with mild asthma 14 years ago. In the last 10 years I've had increased chest infections and viral infections affecting my chest. In September 2011 I was diagnosed with Breast Cancer (I beat it!!) and as is normal prior to the surgery, I had a chest xray done where they queried marks on my lungs with TB. (never had it). A visit to the Respiratory Consultant followed (2 months later) where he took my history and this was to be followed with CT Scan. However, whilst hospitalised during and because of Chemo treatment, I became extremely short of breath for several days. They did the CT scan while there and I was treated for Aspergillus Fungal Infection. I'm not really sure anyone knew what was really wrong!
To cut a long story short, this happened again 4 weeks later after my 2nd chemo session and the shortness of breath was even worse. They explained that the chemo was 'waking' something in my lungs and that it would 'probably' settle. I continued to take Pulmicourt and Brycanil which I've taken for the mild asthma, and returned for follow up with the respiratory Consultant in August when I returned from a 3 month holiday overseas visiting family.
Another CT scan showed that my lungs were worse (didn't I know it!) although the breathlessness had initially settled around a month after the chemo, I had noticed that I was now getting out of breath walking up the slightest incline. Apparently there was a lot of inflammation in the lungs, and the Consultant was confident that it was in fact EAA. As there was no obvious link to the disease, i.e. keeping birds, farmers lung, and any other obvious reason, he arranged for me to have a VATS Lung Biopsy, which was done in January this year - I had the please of having the chest drain removed only for the lung to collapse again and have to have another tube put in - HELL!!!! plus a further 10 days in hospital!
The surgery confirmed that it is indeed EAA. Another visit to the Consultant followed by Lung Function Test, CT Scan and 6 minute walking test - and in the meantime continued with my puffers. If I had still got my persistent cough, he would have then put me on Steroids (?) but the surgery seemed to have 'removed' the cough!
Almost 4 months after the last visit and tests, I have deteriorated - 'hard' dry coughing spasms to the point where I am almost sick - in fact I fractured a rib the other week through coughing so hard. More breathless than ever, especially on bending forward and returning to upright position, and the other week hyperventilating when exerting myself 'slightly' more than usual. I saw the consultant last week for the results which show that the scarring needs to be slowed down - hence getting worse.
So I am now on Steroids (Prednisolone 5mg x 8 daily). Started them a week ago and although I'm sure all the symptoms/feelings I'm getting are quite normal, it would be good to get some reassurance. I have at times felt quite anxious for no reason - is this a side-effect? The indigestion - well, I'm writing this at 3am due to being woken with horrendous indigestion. I suffer insomnia anyway which is now twice as bad (eyes popping out of my head!)
My life has changed completely in the last 18 months since the shortness of breath started - I was ok before the chemo apart from that darned cough. I was fit and healthy(ish), ran an allotment site and practically lived there, loved it so much. Living alone I did all my own decorating, handy work etc.. and played with my 2 and 4 year old grand-daughters. Now, I can't do any of those things and it's heartbreaking. I have my down days as I'm still trying to come to terms with how this has now affected my life and to accept it. BC was a breeze compared to this...
Sorry for rattling on - but it helps. If anyone else is familiar with this disease, it would be good to hear how you cope.