I was diagnosed with BOOP and bronchiectasis when I was 3 years old, hospitalized, then put on oxygen and slowly improved and off oxygen when I was 10, i am now 21 and in college. Today I went to see my doctor, and she said my fev1 numbers growing up and now are constantly around 19%... but she is confused that I can still walk around relatively fine without being in a wheelchair/oxygen... she said someone with those numbers would already desperately be on a transplant waiting list. She wants me to get a biopsy done to see if I was even diagnosed properly... but even with a different diagnose, the results don't really match up. I still get short of breath walking faster or carrying heavy objects, but apparently much better than one who is supposed to not be able to even walk to the bathroom...
Anyone have thoughts on why this is?
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brisingr55
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! was in a similar situation, though with COPD, and continued working until my FEV1 dropped to about 23/4% That appears to be unusual but I managed okay. I think I had been deteriorating for so long, a little at a time, that my body and my habits had adjusted to managed the limitations. Good luck. x
Like you, I was diagnosed with bronchiectasis at aged 2 but am much older now (63!). I remember a consultant telling me years ago that, although I had much lung damage my measurements were good because my good lung areas were compensating for the bad lung areas and were working extra efficiently.
Is your DLCO (or TLCO in metric units) preserved? FEV1, while a valuable measurement often used as a surrogate for overall lung function, doesn't tell the whole picture as it is mostly a measurement of airway function. It gives no indication on how well the lung is transferring gasses. Most people with a FEV1 or 20% have underlying damage to the alveoli and therefore have a DLCO that is proportionately reduced. Even if your measurement was within the normal range, it is still surprising that your symptoms aren't more debilitating. Hope you are being evaluated at a good teaching institution by a distinguished chest physician.
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