Swyer james mccloed syndrome and bronciolitis obliterans .

[coral12]

Hi all. Hope your keeping well. ? I moved to scotland 3 mths ago .had no chest infections so. far bp abit iratic. Im on spiriva. Titropium.lnhalwrs .ameprazole. Bone tabs as my osteoporosis is hell at min . just been to c consultant.dont need azith 3 times a week at min since last 3 mths av been guud. Just wondered if anyone as the above .my consultant said u can live with 1 lung this syndrome mean left lung is really small but damaged so mite av to lose it at some point

[Katinka46]

Hello Coral,

I have just looked back at your earlier post and realised that somehow I missed it. I always take a special interest in those with Bronchiolitis Obliterans, (AKA Obliterative Bronchiolitis, and Restrictive Bronchiolitis). I am sorry not to have spotted it at the time. It is what I have. I see that our lovely Japanese Caspiana responded. It is rare disease, which means that a lot of doctors are not familiar with it.

I have just looked up Swyer-James-MacLeod-syndrome. Wow, you really do go in for rarities. Two Zebras (rare diseases) dancing a tango in your ribcage. I imagine that it was difficult to diagnose? Did you have a lot of chest infections as a child?

I am not on any inhaled medication as mine is fibrotic and there is no inflammation. i was in hospital in April and the nebulisers and steroids I was on did nothing; my body eventually got itself better. It does sound as if Scotland is good for you.

All the best

Kate x

[wheezyof]

Hello Coral,

I have bronchiolitis obliterans(OB) but mine is with bronchiectasis.

I too take omiprozole and adcal. I take azithromycin 3x's a week and have 3 inhalers. Fostair, ventolin and spiriva respimat.

I'm glad Scotland is suiting you.

All the best from a fellow OB person xx

[Aronjay1]

Hello, I have been diagnosed with swyer James syndrome as well. I take inhalers off and on as I really dnt feel they help much for my breathing. My lung function is around 30% and has been as low as 26%. I also have bronchiectisis as well. I am a 48 yo male.