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.

9 Replies

  • Hi, sorry to hear you've had such a difficult time and especially at this time when you should be enjoying your new baby.

    I've googled BOOP several times following a year of non-stop deterioration without any classic symptoms of bacterial infection. All the articles say that while difficult, it's treatable and people do recover from it. So try not to fret too much until your current treatment is finished. Are you happy that you've got the best consultant ? If not, do some research and change. I really hope you get some answers soon and a treatment that works for you.

  • Hi there, thanks so much for replying. Unfortunately it's not BOOP he thinks I have, but the other one which has no cure. I do trust him but I'm a bit frustrated that I'm only hearing this now after 8 years. Ireland is very small, only a handful of consultants but he has discussed my case with the lung team in the only hospital that does transplants etc

  • I'm sorry, I had confused the two illnesses. You have every reason to be anxious but until the biopsy is completed they don't know for sure. As you are young and otherwise healthy, your chances of fighting it are better. Try to stay as calm as possible until you know for sure. So many diagnoses prove to be incorrect and there is still a chance it may be something else. I hope so.

  • God I hope so too. I can't believe this news and feel like what the hell has all the monitoring been for the past 8 years when I'm only getting this news now. I'm not entirely sure myself re the two except that he said it's not BOOP. I'm dreading the biopsy and recovery but sure what can I do except see what it is and take it from there. Thanks so much for replying, appreciate it

  • How terrifying for you. Is it bronchiolitis obliterans or obliterative bronchiolitis? There is much confusion about the naming off these two conditions. Do you feel confident that the doctors are doing all they can? Are you getting enough help from family and friends? We are all feeling for you. This is an amazingly supportive group.

    Lots and lots of love to cushion through the nightmare you are living through.

    And do keep us posted about what is happening.

    K xxx

  • Hi there, he said bronchiolitis obliterans but not BOOP. What is the difference between that and obliterative bronchiolitis? I'm afraid to google any more - my nerves are completely shot after the first time! I'm not sure re the doctors, I go back to him mid August. I don't understand why I wasn't told my lung function had decreased so much and me going off and getting pregnant!! I don't know how I survived that!! Family and friends don't seem to get it or how serious. They think I'm lazy if I don't want to go for a walk on a cold day etc. Yet they read up nothing on it. Friends have been better than family but it's hard to explain isn't it? And hard to potentially face your mortality!! Thanks a mil for replying x

  • Morning nfanning, I think the difference between the two conditions is this: in BO the damage is in the bronchioles, in OB the damage is round them. The reason I know about it is that I have something that seems to be OB. It is proving very hard to diagnose. It all started five and a half years ago. And I am still here. The other thing is that I am old (-ish) with grown-up offspring and a clutch of grandchildren. I do so sympathise with you at the other end of your life. A lot of it will depend on your personality: I am a "worst case scenario" type. I want to know everything. Once I have walked around a little in the worst that can happen, in my head, then everything that isn't that is a bonus. Does that make sense? I can't cope with misplaced optimism, people dangling tantalising "hope" in front of me, or "think positive." I am a realist. A 'here and now' person: this is where I am, this is how things are. You have done nothing to contribute to your problems, you have nothing to blame yourself for. Look into the beautiful, wise eyes of your baby and know that there is nothing more special, more important than the creation of that little person. And nothing, nothing can take that away from you.

    I also sympathise with trying to get people to understand what you are going through. It is a very unusual disease. Few will have any idea about it. That is why I have a zebra on my profile: zebras are rare diseases in the medical profession. Young doctors are told: "When you hear the sound of hooves think horses not zebras." Ie go the common explanation before going to the end of the text book. But I think we do have zebras.

    Sorry to go on. But I am very moved by your story.

    Love, hugs and hang in there

    K xxx

  • Hi there, I am so sorry you are going through this especially at such a young age and after having your baby. I have a few comments for you:

    - You questions re bronchiolitis obliterans and obliterative bronchiolitis: my understanding from reading is they are the same thing. Cause of the disease is variable and often unknown (strangely enough they think that some forms are more likely to occur in non-smokers rather than smokers so try not to conclude that your mum's smoking has caused your lung problems).

    - Regarding your dr not telling the details of your situation over all these years I agree that that is very "bad" of him. However, easily understood: probably thought he did not want to worry you as he expected you to stabilise. It sounds like he has gotten on top of your disease though as he has consulted with available experts about your situation. However, with such a serious disease it would be worthwhile seeking a second opinion. If I was you I would do that and probably before agreeing to open lung biopsy. I am sure your consultant will help you access another specialist.

    - Regarding open lung biopsy: I have heard of people recovering well and not having any issues with it. I have also heard of the opposite where people have never recovered to the state they were in prior. It is a very invasive procedure so you must talk about risks and complications, their likelihood etc. I would want to know what is the likelihood of getting a clear diagnosis from the biopsy (it is not uncommon for the biopsy to be inconclusive). Secondly, I would ask if and how the results of the biopsy will affect treatment.

    - My advise would be (and I hope your dr has already discussed/done some of this) to continue with your medications etc as directed, but make sure that you avoid respiratory infections including chest infections at all costs. This is something that is advised for all lung conditions as we have particular sensitivities to viruses and bacteria with already compromised (inflamed, scarred etc) lungs. So please (if you haven't already based on your diagnosis of bronchiectasis and asthma) try to implement the following:

    + pneumonia vaccination and annual flu shots, + eat healthily, get enough sleep etc. + get you immune system in top shape: get your Vit D levels checked and make sure you are in the upper range as discussed with dr, consider taking vit C, garlic supplements etc when feeling like getting sick+ other important part of the immune system is the gut flora: take a probiotic especially when taking antibiotics or feeling unwell, + avoid people with colds and flus, + wash your hands often and only touch your face after you have washed your hands, + use antiseptic hand gels when outside, + breathe in through your nose not mouth + Use Vicks First defense nasal spray after being around people with colds/flus or after being in crowds such as child care centres etc.

    Please talk to your gp about some of the measures I mentioned regarding preventing infections such as taking supplements to make sure they will not interact with your medications. Chest infections can lead to deterioration of already compromised lungs and should be avoided as much as possible.

    When you see your consultant mid August take a list of questions with you. Good luck and let us know how you go. Best wishesxxx

  • I have a friend who was treated by Professor Finbarr O'Connell at St James in Dublin for BOOP.

    If you are being seen at the Lung Transplant facility at the Mater you are being seen by some of the best Doctors (Egan & Gaine) in the world. The Professor of the Dept there travels all over the world to speak at conferences. They also worked in the US & elsewhere.

    Sadly outside your Consultant & the Mater / St James there is no one else who can help. Support organisations like Irish Lung Foundation do not have the type of people you need to talk to available.

    You seem to be currently anxious understandably, maybe you could look into relaxation techniques, counselling, acupuncture or breathing physio in parallel with your medical investigations, it will help.

    I have been on your journey to some degree (in Ireland) although not with BO and can give you my tuppence worth. I did meet a medically qualified Pulmonary Physio recently who helped me a lot. PM me and I'll send on their details.

    Good luck,


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