Please help! My fiancee started with lower pleuritic chest pain, non-productive cough, and shortness of breath in May 2008. Chest xrays appeared to be pneumonia. CT was ordered a week later when syptoms persisted. Report is as follows: Impression: mild ground-glass opacification bilaterally with mosiac pattern suggesting bronchiolitis obliterans with two pleural- based nodules in the right lower lobe each measuring 5mm or less. Mild blilateral hilar and mediastinal adenopathy. These findings, in the absence of pleural disease, are highly suspicious for Sarcoidosis. No cavitating process. End of report. This lead to a Bronchioscopy which revealed: 2x Lymph Node, right paratracheal, biopsy- Anthracosilicosis. Still nondiagnostic, he then had a mediastinoscopy with VATS, open lung biopsy. Findings: Lung, right upper and lower lobes, wedge biopsy- Marked Atelectasis. Mild Interstitial Fibrosis with Histiocytic Infiltrate. the PFTs. We were then refered to UVA of Charlottsville, Va and later to John Hopkins in Baltimore, Md. Each facility doing their own tests and still no diffinitive diagnosis.The biopsied tissues show clinical differential diagnosis to other comparitve tests. PFT Interpretation: Moderate, restrictive ventilatory defect without defined bronchdilator responsiveness. Would anticipate significant symptomatology on the basis of thes PFT's. Remarkable preservation of DLCO suggests that this is not interstitial lung disease. End of report. His physical history: sleep apnea (presently not being treated), PVD, obesity, partial colectomy (perforation of the colon 1993), appendectomy (due to the perforated colon), shortening of enlongnated toes-(1990's). His recurring symptoms: malaise, fatigue, dyspnea, non-productive cough, occassional hypoxia. All the while, his condition comes and goes. He has been experiencing another occurrence for over a month now. Please, if you could just offer an opinion or suggestion, we would be VERY grateful.
I am very sorry to hear of the ordeal that you and your fiancé have had to endure, including the uncertainty of diagnosis, despite consultation with medical experts such as those to be found at UVA and Johns Hopkins.
The findings you describe are consistent with the diagnoses that have been rendered. I can add nothing to that. The best advice I can provide is that you request that the primary pulmonary doctor currently providing his care consult with one of two individuals, colleagues of mine, who have had extensive experience in the diagnosis and treatment of the complex non-infectious lung disease that you have described in great detail. In no order of preference the two are: 1) Dr. Kevin Brown, pulmonary specialist and staff physician at National Jewish Health (formerly National Jewish Medical and Research Center) in Denver, Colorado and, 2) Dr. Talmadge King, Jr. at the University of California Hospital, San Francisco. Each of these physicians also have close working relationships with Pathologists, whose primary area of interest is Interstitial Lung Disease.
What I propose is no reflection on the expertise of the physicians who have cared for your fiancé, but either of these experts could take a “fresh look” at all that has transpired and best offer the second opinion you are looking for.
Thank you so much for taking the time to read and answer my post. Our intentions are to plan a comprehensive medical exam at National Jewish Health for a "fresh look" and hopefully an answer, good or bad. Thanks again.
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