New diagnoses of obliterive bronchiolitis, anyone have this and how are they getting on?

Hi always been told I have asthma by my specialists but always been a special case because of how I don’t react to the medication that well but seretide and montelukast always helps since I been experiencing severe shortness of breath in December I’ve been kept a close eye on and since all the tests have been done I received a letter from my specialist that she has reached a dIahnosis of OB but am going brompton anyway cause they want to have a look and stuff but just wondering if any others have this and how they are getting on as I’m only 19 and am suffering with bad wheezing and breathlessness and extreme fatigue permanently don’t know how fast it’ll progress as I’ve probably lived with this most of my life and had a misdiagnosis but has only exacerbated now, could never really run too far throughout my whole life but when they say asthma you believe them but turns out it probs never was. It’s weird how my spirometery has stayed the same since it got bad but my breathlessness is so bad an hard to live with, heard somewhere that cause it’s in the smallest airways it don’t always show up on spirometery if it worsens?

[Katinka46]

Hi Ricky. Yes, I have it, there are a few others here with it. I am sorry. You are very young. I was hesitating to reply to you the other day as I would have had to be honest. I will message you.

Kate x

[Hidden in reply to Katinka46]

Please do, if I’ve had it for years it must of slowly progressed but wondering how it will progress from here, trying to find out as much as I can

[sassy59]

You have a very knowledgeable person in kate so I’m glad she replied to you and will be messaging you.

Thinking of you Ricky. Xxx