Sarcoidosis - my story, my thoughts, part three

This is a continuation of my story on Sarcoidosis

Sarcoidosis is relatively rare among whites in the USA - per

I was recently having an introductory visit with a doctor who specializes in sleep disorders here in Kirkland, WA. He noted with surprise that I have a history of Sarcoidosis. He said I was the second patient from Boeing that he had seen recently with Sarcoidosis. I asked him if the other patient's name was "Jeff R_____" as I am acquainted with another guy in my work area who also has Sarcoidosis.

The doc said, "No", and now that makes three. What are the odds? He asked me if Boeing kept track of that sort of thing, and I told him that between HIPAA and Boeing's tendency to keep a "Chinese wall" between employee's medical info and any corporate data I would think it extremely unlikely.

My doc said, "Too bad, it might make for an interesting info gathering website or something." And that's where I come in. I am blessed with a large and well searched website, so, launching....

I am a white guy about fifty years old. Jeff R______ is also a white guy, probably a few years younger than me. I have worked for Boeing in the Seattle area for over 25 years. About 20 of those years have been in the Boeing Commercial Airplane (BCA) labs in the Duwamish corridor of South Seattle. (The BCA labs changed ownership to Engineering Operations and Technology / Boeing Test and Evaluation back in January 2010; I'm still there with unchanged duties.) Jeff has also been associated with the labs for over ten years.

The Duwamish Corridor contains one or more EPA Superfund sites, so industrial contaminants are a possibility. My day to day duties with Boeing are pretty mundane as it pertains to exotic environments. We work in an office at keyboards, and our software is run on electronic test benches. I don't work with Skydrol or Jet Fuel or anything like that on a daily basis.

I am not on a hunt for the next "mesothelioma class action lawsuit". Boeing has been quite good to me, and this disease is not really changing my life or anything. I'm using the bully pulpit of a decent website to see if there are more data points out there that might make us smarter on causality of Sarcoidosis.

If you feel like it, drop me a line with your story as it relates to Sarcoidosis and/or Boeing. If you agree, I can publish it here (maybe redacted if you wish) and we can all learn.

-Todd Peach

Jeff shared a few details of his story with me. He was 47 and had no outward symptoms at all of Sarcoidosis. He was working on his car when he slipped and fell, striking his ribcage on a door sill. Fearing a cracked rib, he sought medical attention. An x-ray showed lots of 'spots' in his lungs. He was referred to his primary care physician for follow-up.

During the investigation, one of the possible diagnoses shared with Jeff was 'cancer'. You can imagine what that did to his general outlook on life... Jeff had his biopsy done by going down his throat. One of the nodes was in his trachea area and relatively easy to get at.

The diagnosis came back for Sarcoid, and it was only the second one his medical team had ever seen. Like me, they elected to simply monitor the disease rather than 'treating' it. He saw a respiratory therapist several times to monitor his lung capacity, and he had chest x-rays at regular intervals.

A wrinkle - during this time Jeff was also diagnosed with Celiac disease and he began a gluten free diet. Coincidentally, (or not) he made great progress on his Sarcoid recovery shortly after going gluten free. His doctor said that the x-rays are now more or less 'undetectable' for Sarcoid; because he knows they were there and can compare to the old, he can still spot traces of scar tissue, but they'd be difficult to spot without the old ones to reference.

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