In January 2010 I had pulmonary emboli (PEs) after a hip operation. (Typical old ladies op). 98% of patients who get PEs make a complete recovery, never occurred to me that I wouldn't get better, but I didn't. But having had asthma since I was seven doctors all assumed it was asthma. I knew it wasn't. Two things happened: the clots did not fully resolve, so I now have Chronic Thromboembolic Disease, (CTED). Papworth do an operation: pulmonary endarterectomy, for that, but in my case said it wasn't severe enough to operate. But what also happened — this took even longer to sort and is not fully sorted yet — because the PEs were so widespread, like a Jackson Pollock painting — swoosh — throughout both lungs, there was much more damage to the small airways than anyone realised. And not showing on CT scans. That damage has only recently been recognised. For two months after the op there was a lot of congestion and I went on coughing up stuff containing strands of fresh blood. The damage appears to have caused Obliterative Bronchiolitis (OB). This is a fibrotic condition, the scarring is round the bronchioles, (small airways) and was initially a repair process to heal the damage. Unfortunately sometimes the lungs get overenthusiastic about that kind of repair work and forget to stop. So, the fibrosis is strangling the small airways.
Some small airways diseases do respond to medication because they are to do with infection and inflammation. If the OB is "purely" fibrotic there is little to be done.
Does any of this resonate with your problems? I am particularly interested because I am in touch with a man in his sixties who developed OB and is also an asthmatic. I am gathering a small (very small!) cohort of patients with OB who also have asthma.
I guess you are young? I am seventy.
The High Resolution CT scan is a bit different. There is no die trace injected into the vein. It doesn't take as long. The breathing manoeuvres are different, you should be asked to breath in and then breath fully out and hold that as long as you can, not easy. What should come up from that is a more detailed picture of the actual lung tissue. If there is a distinctive "tree-in-bud" patterning then that denotes one type of small airways disease, generally treatable, if there is mosaic patterning then that denotes air trapping which is very characteristic of OB. The only certain diagnosis for OB is via a lung biopsy. A bronchoscopic biopsy can prove inconclusive because they may not know exactly where to go in the lungs. The other, more conclusive one and obviously invasive, is an open lung biopsy. The two consultants on my case are reluctant to do a biopsy as for me there is not a lot of point. It will not point to any change in treatment. So I say I have OB in the absence of anything else. And my consultants are more or less happy to go with that.
Sorry to go on but you did ask!
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All the best