I have been told I have Bronchiolitis. In order to know the cause, type and treatment, I have to have a surgical minimally invasive lung biopsy under general. I also have a blood clotting disorder so not ideal to have surgery but doctor says that is they only way to know what type it is. There are a few scary types. Does anyone have this diagnosis and did you need surgery to confirm diagnosis? Also what is the treatment and have you improved or gotten worse after treatment. I appreciate any advice.
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rottiro1
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Yes I am going to a hematologist first also looking into bronchial cryobiopsy but not sure if that is a risk for me also having a blood clotting disorder.
I have Obliterative Bronchiolitis. This has been suspected for three years, but my consultants would not make a diagnosis without a biopsy but were very reluctant to do that as it was invasive, sometimes inconclusive and may be counterproductive as the condition was initially caused by lung damage. They referred me to the Royal Brompton Hospital in London. And the consultants there after a High Resolution CT scan and thorough Pulmonary Function Test concluded that I did have OB. Where are you? UK?
I am very interested to know more if you are happy to tell me.
I am in Australia- I have never heard of obliterative bronchiolitis so I was wondering about it. I am lucky as I only have mild bronchiectasis-I also have polycythaemia vera which is also a blood clotting disease . It is very well controlled by a baby aspirin and 10 hydrea tablets a week. I have none of the problems that many with PV have. Do you have PV?- Marion
Not many people have heard of it. It is rare and one of the small airways diseases, (but not a small disease). There are a few people on the forum who have it. It is a fibrotic disease. It is caused by damage to the small airways, the lungs go into repair mode and produce scar tissue, but unfortunately forget to stop when the work is done and go on producing the scarring. It is round the airways and kind of strangles them, hence the "obliteration" effect. There is not a lot of medication to treat it. It presents as an obstructive disease and on PFT looks a little like emphysema, but isn't. It is difficult to diagnose and I suspect there is more of it around than doctors realise.
I don't have PV. Does that mean that you tend to get thrombosis? And have to be especially careful about not getting DVT? Having said that I don't have PV I did get PEs and am now on Warfarin and will be for life. My father had recurring PEs also. Hm... is there a link?
Oh that’s no good - I’ve never had a blood clot - I was dx before I got one luckily. Dx from blood test for something else. Dr from the UK picked it up that I had high platelet , red blood cell and white blood cell counts then sent to haematologist who recommended a bone marrow biopsy which confirmed PV And it’s mutation. There are other types —-ET and MF. Mine can progress to MF where the bone 🍖 marrow becomes fibrous. Sorry to bore you !! But lots of new research and medication being tested.
Hi, There is not a magic cure for your ailment, it can only be treated so most of the side effects will always be with you. Do as much exercise that you can endure, eat sensibly and pace yourself & do not entertain thoughts of things you might be tempted to do without serious planning. I have severe emphysema and am a useless being being unable to do very much which doesn't leave me breathless.
Look after your self, the biopsy will tell your clinician what treatment you should have. Sorry to be blunt.
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