I am an asthmatic who started to experience severe breathlessness about 4 months ago. Never experienced the like before. Inhalers didn't help ...
Chest x-ray showed abnormalities and CT confirmed that but my consultant (who is very nice and helpful), phoned the other day to tell me that he and two colleagues still can't provide a definitive diagnosis! Although there is clearly something wrong with my lungs. Consultant is going to refer me to his colleague at Papworth, and it looks like I will need a lung biopsy.
I am surprised that two chest consultants and a radiologist could not diagnose using such sophisticated tools!
I would love to speak to anyone who has experienced this rather unusual situation!
Thank you, x
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GingerCatJayne
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It sounds very unusual. Do you know what showed on the X-Ray or the scan? And have you the results of a Spirometry test or a Pulmonary Function Test? It intrigues me because I have unusual/rare conditions so other people's oddities makes my ears prick up. If they are looking at the possibility of small airways disease then I think you should have had a High Resolution CT scan. Was that what you had? I envy you going to Papworth, they really are tops, for one of my conditions.
If you have the time I should like to know a little more. I too have/had asthma. I say 'had' because most bizarrely since my current chest problems started, (15 January 2010, to be precise!) my asthma has very definitely taken a back seat. Weird. Actually, I believe that is because both the conditions I have can cause dilatation in the bronchi.
I do believe it was a standard CT. I suspect they may have an idea but will not disclose until certain (it isn't cancer, that I know). I think small airways is a possibility ...
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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Hi this happened to me and two years later after numerous bouts of pneumonia and hundreds of tests my consultant said we would have to start again as maybe something had been overlooked. Two weeks later I had another CT scan on a brand new CT scanner installed that very afternoon. It was a completely different experience from my first CT scan and thank goodness it showed up my problem. I have bronchiectasis as well as asthma. I now take Azithromycin 3 times per week and I am very glad to report I have been well for the past 2 years. A miracle. Take care and try to be patient, lung disease comes in many shapes and sizes. I hope you will be lucky like me. Good luck, Maximonkey
Thanks Maximonkey. I am coping well at the moment. I have been asthmatic since birth; and was a passive smoker before I was born. In childhood, I suffered extremely bad asthmatic attacks which brought me to the brink of death many times. The hot weather certainly makes it near impossible to breath - inhalers don't help.
I think I have moved on to the next stage in my lung history. I take life as it comes now; and I don't get stressed anymore. Best way to be now.
Update: I am back! Unfortunately, I recently contracted pneumonia and flu and spent 4 days ventilated in ICU and then 7 days in HDU, and finally 2 nights in recovery step-down. It happened so quickly - I woke up in ICU seeing aliens and UFOs! I am due back at Papworth for a CT and more breathing tests to check the progress of ILD which they are considering could be sarcoidosis!
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How can I be strong to receive the results of x-rays?
Waiting anxiously for CT results
advice appreciated x 
Anxiety between CT scans
CT SCAN - more bad news
