hello. i was told a year ago i have panlobular emphysema. however i am not alph 1 deficient. why would i have this type of emphysema if i am not alpha? does this progress faster? i am not a smoker. i am 48. what is the prognosis when i seem to get many lung infections.
Panlobular emphysema is characterized by widespread areas of abnormally low attenuation representing the uniform destruction of the pulmonary lobule. Pulmonary vessels in the affected lung appear fewer and smaller than normal. Panlobular emphysema is almost always most severe in the lower lobes, characteristic of the diagnosis of alpha 1 antitrypsin deficiency, but not specific to it. Studies have shown a small increase in risk of emphysema for persons with the MZ phenotype.
This form of emphysema, you allegedly have, has also been associated with exposure to talc, a mineral widely used in the ceramic, paper, plastics, rubber, paint, and cosmetic industries and with asbestos exposure. History of occupational exposure or of IV drug addiction is the major clue to the diagnosis. The high-resolution computed tomography (HRCT) finding of small centrilobular, with or without panlobular emphysema in the lower lobes, is highly suggestive of pulmonary talcosis and the presence of these patterns in drug abusers or in patients with an occupational history of exposure to talc is highly suggestive of that diagnosis.
My advice is to repeat testing for Alpha-1 AT level perhaps by a different laboratory to make sure your level is not low., along with PI phenotyping. Values in the normal range would rule out genetic abnormality of the classical, ZZ phenotype. However there have also been unsubstantiated reports of normal levels of dysfunctional alpha-1 AT (caution – I was unable to find reports of this in the recent medical literature.)
That you get frequent lung infections may or may not be related to the diagnosis of panlobular emphysema. Increased rates of chronic bronchitis and recurrent infections have also been reported in the presence of the MZ phenotype. I cannot comment on the prognosis related to frequent lung infections but can state with some certainty that the progression of COPD can be accelerated by frequent infections.
I suggest that you pursue your question with an expert in the pathophysiology, diagnosis and treatment of emphysema, such expertise to be found at National Jewish Health (formerly National Jewish Medical and Research Center, in Denver, Colorado, to get more specific information about your lung condition and the prognosis.
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