Monday, November 18, 2013

The Silver Lining and Bad News/Good News


The next morning at National Jewish Health in Denver, we had a brief meeting with one of the nurses on the doctor’s staff and she told us that the doctor would contact us within the week with results after reviewing all of the data from the tests that they had conducted.  We headed to the airport and then back to Florida. 
A few days later, the doctor’s call came in:  I did indeed have Chronic Beryllium Disease (CBD).  The call basically confirmed what I already knew.  There was no other explanation for my symptoms.  It was a simple equation, but a complicated disease and a complication to my life and my future health.

Beryllium Exposure + Beryllium Sensitivity + Symptoms =
Chronic Beryllium Disease

There was a silver lining with bad news, good news – I could receive additional financial compensation under Part B of the Energy Employees Occupational Illness Compensation Program Act (EEOICPA) which would include a lump sum payment and continuing payment of all health expenses associated with CBD. 
Of course, the thought of suing my employer of 50+ years ago came to mind, especially when I talked to other people.  “You should sue.  Talk to a lawyer”, they said.  My decision to not go that route is a story for another day. 

A couple of weeks later I received his report which follows:

Patient is a 69 year old gentleman, never smoker, who about 1 to 2 years ago began noticing shortness of breath and dyspnea on exertion while playing golf.  He was seen by his primary care physician.  Cardiac workup including a stress test was unremarkable.  Chest X-ray was ordered which was followed by a CT scan and pulmonary function tests.  The CT scan was abnormal, but the pulmonary function test was normal according to the patient.  After he was seen by the pulmonologist, he received a letter related to his previous beryllium exposure encouraging him to be evaluated.  Patient also underwent peripheral blood BeLPT on 1/25/2012, which was abnormal.  That was his only beryllium test to date.  Since then until now, patient has been still complaining shortness of breath and dyspnea on exertion, but it does fluctuate depending on the weather.  In addition, he has noticed a skin discoloration on his lower back.
Patient’s beryllium exposure occurred back in 1960 where after completing high school he worked for (a beryllium company) as a lab technician.  He worked in extruding beryllium tubing and making nose cones and heat shields for military purposes.  He handled the beryllium directly where he heated it and then had to mold it, and also worked on polishing it.  He does recall an episode when a piece of metal that contained beryllium broke off and hit him in the forehead and he needed surgical excision of the injured area.  He stayed with this company for about two years and then moved on to work … until retirement in 1997 and during that time, he had no exposure to beryllium. 
Included in the report were results of previous tests as well as those performed at National Jewish Health.  The following is the ASSESSMENT and PLAN:

…Workup showed evidence of bilateral upper lung interstitial infiltrates and volume loss.  He does have an abnormal peripheral blood BeLPT, abnormal BAL BeLPT and also does have non-necrotizing granulomatous findings on trans-bronchial biopsy, all which qualify him for a diagnosis of Chronic Beryllium Disease based on The Department of Labor criteria.  Currently, he has no significant physiological limitations from his underlying CBD and based on his CT scan report of 3/2012 which was compared to 2011 it does not appear that his lung disease has progressed.  At this time, I recommended a one-year follow-up with patient to continue monitoring his disease and if there is evidence of disease progression over time that would necessitate immunosuppressive therapy to control his CBD.  He did exhibit reactive airway disease in his PFTs and would recommend treatment with an inhaled corticosteroid and a long-acting beta agonist to improve his airflows.
…we will follow up with patient in one year’s time with repeat chest x-ray, PFTs and exercise test, and if there is evidence of disease progression at that time, then we will discuss options of immunosuppressive therapy.
So, as I always like to say, using Paul Harvey’s famous words, “Now we know the rest of the story.”  It was validating to find out that there is a medical reason for my symptoms, a hope that there was help on the horizon from National Jewish Health and the possibility of future compensation from the EEOICP. 

Of course there is fear and trepidation of the unknown.  My hope is that what took 50+ years to progress to this point, will take 50+ more years to progress any further.  That will make me 109 years old before it becomes a bigger issue.  That will be great!

Everything you ever didn’t want to know about the Energy Employees Occupational Illness Compensation Program Act (EEOICPA) is here:  http://www.dol.gov/owcp/energy/

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