Small Airways Disease: Hi, I am... - Lung Conditions C...

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Small Airways Disease

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Hi, I am diagnosed with Small Airways Disease, is there anyone else with experience of this. There is very little written on the subject. I have bronchodilator and steriod inhalers and breathless on exertion. I have never smoked.

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11 Replies

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Titchy528 years ago

Hidden I'm sorry I've never heard of this illness I'm sure someone will answer you shortly take care x

Toci8 years ago

I am another who knows very little about small airways disease but wanted to welcome you to the community.

PastMeBest8 years ago

Hi Hidden I just wanted to welcome you to our community and I hope you find it useful.

Sorry I don't know anything at all about Small Airways Disease. Possibly it is one of the lesser know about lung diseases. There are plenty of knowledgable people on here though who may be able to help but weekends are pretty quite compared to during the week.

Love your name. Spike Milligan said for years that he was ill and when he died had it engraved on his gravestone.

Regards. John

O2Trees• in reply toPastMeBest8 years ago

Its written in Gaelic on his gravestone at the church in Winchelsea (E Sussex). The vicar wouldn't allow it in English, so that's how Spike got round it.

Welcome from me too itoldyouiwasill

Watfordgirl8 years ago

Welcome from me as well, but I'm afraid I can't help you. Someone will. Sue x

8 years ago

What the saying is you have chronic lung diseases thats not just effected lungs but small airways.

Am surprised no ones heard of it as its copd.

Usually when small airways are trashed becouse the connected to lungs they are to.

But is worth asking doctor as am sure if involved lungs would just said copd.

Katinka468 years ago

Hi Itoldyouiwasill, (easier to say than write!)

Yes. I do know a bit. I have a SAD. In my case it looks like Obliterative Bronchiolitis. There are a few other types. They are very difficult to diagnose because they do not show up on conventional CT scans. A High Resolution CT scan may show direct or indirect signs, according to the type of disease. In my case there is mosaic patterning which indicates airtrapping. In other types there is a pattern that is described as "tree-in-bud". One of the problems with SAD is that Spirometry and Pulmonary Function Tests do not necessarily show much in the way of abnormal readings. Someone with COPD and similar test result numbers to me would not be as breathless or as incapacitated as I am. This has been a problem because doctors think that I am making up the severity of my symptoms. And am just a Spike Milligan style hypochondriac! Tricky.

Please tell me more about your situation. What are your symptoms and how was it diagnosed? If you would like to you may find it easier to message me via this website.

Or I could message you? I am certainly VERY interested in your story. There are three other patients with OB on the site. We are rare birds and need to flock together.

All the best, looking forward to your next instalment.

Kate xxx

• in reply toKatinka468 years ago

HI Kate,

Thanks for your reply. I was first mistakenly diagnosed with Myocardial Infaction and Ischaemic Heart Disease. Beta blockers were intolerable as I have a normally low BP and pulse. I went back to my GP 18/12 later as remained breathless. Put on cardiac investigations pathway again, but after another 6 months went for a second opinion to a caridiologist at Papworth Hospital who reviewed all my notes and said he didnt think I had MI or IHD at all, and referred me to his colleague at Addenbrookes a respiratory specialist. He diagnosed SAD and since I have had Fostair and Spiriva my peak flow has improved 30%! Am looked after there even though it takes 3 hrs travel its worth it for the expertise. My GP was quite put out and said the jury was out, he may be a very knowlegdeable man but the jury is out. When she saw the results of my tests she then became animated and said I was a very interesting case. That is when i said I told you I was ill. No, it didnt cross her mind I might have resp disease even though I showed her a video of me after I had climbed a hill wheezing and taking 3 mins to recover.

I hope you have a great day and keep smiling!

best wishes Diana

Katinka46• in reply to8 years ago

Thanks Diana. You are seeing excellent people in excellent hospitals. Do you feel that you are well looked after? My feeling is that SAD is not quite enough of a dx on its own. I am convinced that my SAD is Obliterative Bronchiolitis. It fits: sudden onset obstructive disease, resistant — unfortunately — to all broncho-dilators and steroids. Which indicates that it is a fibrotic condition which OB is. It was caused by extensive damage to the microvasculature caused by PEs. And the acute phase was just after the PEs; much congestion and coughing up traces of blood. Then the healing process, scaring (fibrosis) became disordered, resulting in permanent, worsening damage. My 'jury', (two consultants), are still a bit 'out' on it. (I'm not sure this image will run much more?) But they do agree that OB fits as a 'possibility'. In the absence of their coming up with anything else I call it that.

It sounds as if yours is largely inflammatory if it is responding to treatment. And the spirometry results are very promising. So that is all good. Long may the improvement continue. Has no one come up with a suggestion of what sort of SAD it is?

Your GP is right to be animated. Has she any other SAD patients? I hope she is animated enough to find out about it. There are papers about SAD, describing the classifications, and the tests to establish them. Although it is actually a chronic, obstructive lung disease, it is not COPD. OB comes up as a differential dx for COPD investigations. I think OB and the other SADs are now becoming more understood.

All the best and keep us informed

Kate xx

Katinka46• in reply toKatinka468 years ago

P.S. I sympathise about the video of your breathlessness. I did one of those to show how SOB I am in the evening. It backfired. The consultant said it was dysfunctional breathing.

Hmmm....

That was not my LLC (Lovely Lung Consultant) he fully accepts the severity too my symptoms.

Leshere8 years ago

I to have a long standing diagnosis of SAD. I agree there is little information about it. Much of the time I carry on quite well, do long cycle rides, walk a lot. Not much good at intense exercise. At the moment laid low with a feeling like only half my lungs are working. SATS zoom about 90 to 98. I use Qvar when things are not so good but that usually ends up with Candida.

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