Hi all, I'm new to this site. I'll just give some background info. First let me state i'm a non smoker and have never smoked but lived at home for 26 years with my mum who chain smokes.
About 10 years ago I noticed I was getting a lot of chest infections and quite short of breath when I tried to go diving on honeymoon - I just couldn't breathe deeply enough. About a year later we did medicals in work and they told me I had asthma. So I asked my GP for a referral and 8 years ago I was diagnosed with bronchiectasis and asthma and have been treated for inhalers ever since. I've always found though that the inhalers never helped.
Last year I got pregnant and at one of my checkups my respiratory consultant casually mentioned that I might need a lung biopsy after the pregnancy but not to worry. Just after I had the baby (2 days later) I became very sick with full blown flu and my breathing was very bad as you can imagine. In April I went for my routine yearly bronchoscopy. Nothing has changed on CT scans and X -rays for 2 years. The scope found no trace of bacterial/fungal infection but I'm losing lung function at a steady pace. This was news to me - he never told me this before. Apparently between 2009-2012 I dropped 30 odd %. My last PFT's in May showed an FEV1 of only 48%.
He has taken my case to other respiratory consultants and the lung transplant team in Ireland and they are all saying it looks like I have bronchiolitis obliterans. My heart is absolutely broken and I'm terrified as everything I'm reading on the internet is bad bad news. He is giving me one last shot of high dose antibiotics and steroids for 6 weeks to see if there is any reversibility or else I'm straight in for an open lung biopsy to confirm what they suspect.
I'm terrified, terrified of the diagnosis, terrified of the surgery, terrified I won't be around for my little baby.
The Irish Lung Foundation have been no help. I can't find anyone to talk to about this and would really appreciate anyone who has been diagnosed contacting me or replying here to talk about your experiences with an open lung biopsy, recovery for that and living with the disease and what if anything I can do to try to make life better/easier. I'm trying to get as much info as possible as I'm back to see him mid August and want to make sure i'm asking the right questions.
Apologies for the long post. I would really appreciate anyones help and advice.