Suspected Bronchiolitis Obliterans - i'm terrified

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.

2 Replies

  • Hi

    Got an email notifying me that you had posed a question but I'll be damned if I can find it on the website!

    As far as I'm aware they are the same thing - go figure!

    I've had it over 8 years now after a lifetime of asthma (I'm 63) and it was diagnosed after exhausting all other possibilities.

    The only proper method of diagnosis is from a lung biopsy but the one I had when they were looking for other causes didn't investigate the area required!

    But my biopsy was keyhole using video and not only was it painless but I was home in a few hours. Just three small scars.

    So ask about that and why it hasn't been suggested. If they haven't got anybody who can do it then ask to go somewhere else!

    You might also want to ask what difference it is going to make to your treatment once the cause is identified.

    Try not to get too upset by what you read on the internet. A lot of the bad stuff relates to post transplant issues.

    The biggest frustration with this disease is the lack of information. My GP had never heard of it, nor the specialist breathing nurse, nor the pulmonary physiotherapist. I'm not going to tell you its a bed of roses but one thing I have discovered about lung disease is that it is a very individual thing and you should never generalise.

    Feel free to contact me if you need to.



  • I am new to this website. 25 yrs (in my late 30s) ago I started having breathing issues. It started as asthma, then progressed to COPD, now it is confirmed as Bronchiectasis (a weakening of the airways and scaring of the lung issue).

    I can understand your concern regarding taking care of a family. The best advise I can give you is to be proactive. Question what the doctors tell you and give you. And ask what else can I do to keep my lungs as clear as possible. Keep as healthy as you can. Over the past week, I have been in several chat rooms discussing this issue, and what other people do. I saw my specialist today and he is starting me on a prophyactive antibiotic, that I will be taking for 3 months. that hopefully will keep me out of the hospital and not have the need for any bronchoscopies to clean out my lungs (I have had 5 bronchs within the past year).

    And at the first sign of difficulty, see your doctor asap.

    Don't let it get you down, Beth