For the last 15 years I have had a chronic lung disorder. In the last three years it has gotten worse. I am working with an excellent team of doctors, however they are stumped. My lungs are strucurely fine. We have ruled out many diseases and disorders. The only two tests which have come back with abnormalities are a biopsy showing a 20% level of fat cells in the lungs and two low level functions in my T-cells. The doctors think the two abnomalities may have been caused by the chronic lung infections. They are considering a "mucus" disorder. However, they are having difficulty finding information on this. Do you have any infomation on this or a suggested source to go to? Your help would be greatly appreciated. JEV
The findings you've described are suggestive of the diagnosis of Pulmonary Alveolar Proteinosis, a treatable condition of unknown cause. T-cell (lymphocyte) abnormalities have also been described with this condition. The finding of fat in the lung can also be caused by the chronic aspiration of lipid containing nose drops.
If not already done, the biopsy slides should be reviewed by a pathologist with special expertise in the diagnosis of pulmonary disease.
Have you considered having an evaluation by National Jewish? They are the #1 respiratory hospital in the US & do lots of out-patient evaluations & consulations. They participate with many medical plans & made a world of difference to me when I was an outpatient there for evaluation and treatment a year ago (after I hired & fired 3 lung specialists in HI). Their website is www.NationalJewish.org & they have a toll-free number you can call.
Best of luck--sorry I don't have any other suggestions.
Starion--thriving in HI
Thank you for the comments. I believe the doctors feel they have ruled out Pulmonary Alveolar Proteinosis. I had a CT done when I had a severe infection and there was no sign of anything in the alveolar. I have never had nose drops. Any other thoughts? JEV
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