Timing is Everything

As with a lot of things in life, Timing is everything -- one of my favorite sayings.  The timing of my shortness of breath and the letter I received in September 2011 informing me of the Energy Employees Occupational Illness Compensation Program Act (EEOICPA) was incredible.  Development of symptoms, doctor’s visits, tests that revealed scar tissue in the lungs and swollen lymph nodes and a letter from the CDC -- timing was everything – simply uncanny.

Figuring out what to do next was necessary.  I couldn’t just say that, “Oh yeah, I have Beryllium Disease because, I’m short of breath and have scar tissue in my lungs.”  It had to be proven or disproven to benefit from the EEOICPA.  If I had it, then of course I should receive benefits.  If I didn’t, then what did I have? 

Of course, my wife and I searched the internet for information about Beryllium Sensitivity and Chronic Beryllium Disease (CBD).  We both realized after our search, that it had the potential to be serious, so finding answers was important.  We also found that it was rare and few places specialized in treating it.

The first step was to apply for benefits by filling out government forms.  The forms basically explained what work related conditions/symptoms I had.  I sent those forms within a couple of weeks of receiving the original letter.  I had “scar tissue in my lungs and enlarged lymph nodes based on X-rays and a CT scan”.

The Department of Labor received my form and sent me a letter October 25, 2011 and it told me the medical evidence that was required to prove that I had beryllium related disease(s) and if I wished to pursue the claim, I had to respond within thirty days.

As part of the proof, I had to have a test done to determine if I had Beryllium Sensitivity.  This wasn’t an easy task because I had to find a lab to do this test.  During research of CBD, I found that there were two places in the U.S. that had any expertise in treating CBD.  One was Cleveland Clinic in Ohio and the other was National Jewish Health in Denver, Colorado.  I contacted Cleveland Clinic first because I am a former Clevelander, but never got returned calls.  I then called National Jewish Health and they were most helpful in telling me exactly what I needed to do.

The blood was drawn in Florida by Quest Diagnostics and sent overnight to the laboratory at National Jewish Health in Denver.  The test had to be repeated a second time, because the Florida lab had little or no experience with the Beryllium Sensitivity Test and coded things incorrectly.

On February 7, 2012, the results of the Beryllium Sensitivity were complete and sent to my personal care physician in Florida – He contacted me and congratulated me with the news that I was “not sensitive to beryllium”.  I was his first potential beryllium patient. 

The next day, I went to his office to get a copy of the results for my files.  I looked at the report while in my car and realized that he might have interpreted the report wrong.  I was right, he was wrong.  I officially had a result of Beryllium Sensitivity.

According to the EEOICPA documentation, “Beryllium Sensitivity is an immune system allergic reaction to the presence of beryllium in the body as the result of inhaling beryllium dust particles or fumes.  The medical evidence required to support a diagnosis of beryllium sensitivity…consists of an abnormal Beryllium Lymphocyte Proliferation Test (BeLPT) or Beryllium Lympocyte Transformation Test (BeLTT) that was performed on either blood or lung lavage cells.”

The test I had was the BeLPT and it now entitled me to the following according to the EEOICPA:  “Eligible employees with beryllium sensitivity receive medical monitoring of their condition.  If monitoring reveals that an employee’s condition has progressed to CBD, additional medical benefits and compensation become available…”  I could now seek more answers and it appeared that those answers would be in Denver, Colorado at National Jewish Health who as it turns out has a “Beryllium Department”.  I’m on my way…

For more information on the Energy Employees Occupational Illness Compensation Program Act (EEOICPA), here are a couple of United States Department of Labor links.

http://www.dol.gov/compliance/laws/comp-energy.htm

http://www.dol.gov/owcp/energy/index.htm

Seventeen years old, Beryllium Plant and Secret Government Clearance Required

One might ask “How does a 17 year old end up working with beryllium?” Great question…and I have the answer.  Flash back to June of 1960.  I was a smart kid and skipped a grade in elementary school which made me only 17 at graduation.  A strong work ethic was drilled into me throughout my life, so of course I needed to get a job, quick!  Sitting around over the summer to find myself would never do with my parents, and I wasn’t quite ready for college.

I answered a newspaper ad that was placed by an employment agency.  The job was for a “Lab Technician” which sounded intriguing and scientific; right up my alley.  When I met with the agency and filled out the application, I lied and said I was 18.  They told me that if I got the job with this particular company, I would pay half of the agency’s fee and the company would pay the other half.  So I went on the interview.  There was no secret that beryllium was involved because the company’s name included the word “beryllium” in it.  I passed an entrance test. 

Upon getting offered a position, I was told that the company did work for the U.S. government and I would need to apply to get a secret clearance.  Yes!   This was getting more exciting.  Oh…I did come clean about my real age and got a work permit.  The work permit allowed a minor under the age of 18 to work in a factory.  Good news then, maybe bad news now, but I got hired and worked in the area that I was told “did research and made beryllium tubing for the space industry”. 

The department that I worked in made beryllium tubes of different inside and outside diameters.  In simple terms – we took a piece of solid beryllium and heated it until it was red hot.  The beryllium had a hole in the middle. We then placed that on a metal stick called a mandrel.  A large hydraulic press pushed the hot, softened beryllium through a die that forced the beryllium up through the die creating a tube.  I stood on top of the press and guided the tubes out of the press. I wore gloves (probably made from asbestos).   The tubes were inspected by engineers to look for defects and cracks.  I then took the tubes to an area that had acid pickling tanks.  I placed the beryllium tubes in an acid trough which made the beryllium shiny and smooth by taking off the outer rough surface.  I delivered the finished tubes to the same engineers that inspected them originally.

Even in 1960, hazards related to beryllium were known.  Berylliosis as it was then called, now Chronic Beryllium Disease was known and workers actually talked and joked about how to avoid getting it.  There were safety procedures that were regularly followed at the factory.  Every day when entering the building, we had to change into work clothes that consisted of:  a shirt, pants, underwear, socks and shoes all provided by the company.  Our personal clothes went into a locker.  At the end of the work day, we received 20 minutes of clean up time.  A shower was mandatory, and we left the factory clothes in a laundry bin and we changed back into our personal clothes before leaving.  In the factory, wherever beryllium was processed, there were big vacuum hoses intended to pull away beryllium fumes, gases, fragments and dust. 

So what about the top secret government clearance?  Shhh…if I tell you I’ll have to …. Think back to 1960.  It was the time of the Mercury Space program and still the era of the Cold War.  Our factory made…nose cones for Polaris missiles and heat shields for the Mercury space capsules.

There was 17 year old high school graduate, me, “Taking one small step or giant leap for mankind” making a tube that went somewhere.  I still have no idea what the tubes I made were for.  I guess, I wasn’t on a need to know basis.  I worked in the factory for 18 months.

I went on with life, to college, the army, to college again, family, corporate employment, grandchildren and would often tell the story of my top secret government clearance job at the age of 17.  Those were the days, cough, cough, breathe and breathe!  I loved that job!

The following are links to info about the Mercury Space Program and Polaris missiles if you’re interested:

http://en.wikipedia.org/wiki/Project_Mercury

http://en.wikipedia.org/wiki/UGM-27_Polaris

Huffin and a Puffin Messes Up My Golf Game and a Letter from the Center for Disease Control

In the dog days of summer in Florida, the heat and humidity is rough.  I still golfed in the morning, toting around a bucket of ice to dip a wet cloth in to keep cool.  The summer of 2011 was different.  I became unable to finish an 18 hole round of golf even riding in a cart.  Shortness of breath and tiredness took over.  On a good note, sometimes it came as I was having a bad round.  I'm sure that my Men's golf club guys thought, This shortness of breath is sure convenient.  But, I began to know that something had drastically changed in my health.

Of course, I blamed the heat, but after few lost game finishes, I became more concerned.  The shortness of breath and extreme fatigue was relentless.  My family physician suggested that I see a cardiologist who scheduled a stress test and a chest X-ray.  Heart issues were considered first.  The stress test proved that my heart wasn't the issue.  But...the xray came back with some “areas of concern” on my lungs.  He said it looked like there was fluid in my lungs.  He ordered a CT Scan and referred me to a Pulmonologist.

The Pulmonologist, armed with the results of the CT Scan, said, "It is not fluid in your lungs, but scar tissue."  I replied, "But, I've never smoked, except for two weeks in high school until my mother found the cigarettes and threatened to tell my dad."  I left his office with prescriptions for the treatment of COPD - Chronic Obstructive Pulmonary Disease.

Three days later, I received a letter from the Department of Health and Human Services - Center for Disease Control - National Institute for Occupational Safety and Health.  The letter stated the following (excerpts):

"...sending you this letter and enclosed information because we recently finished a study that included men who worked for at least two days at a beryllium processing plant."

"By receiving this letter, our records indicated that you worked at one of these facilities some time during 1940 to 1969."

"Our study found health concerns that we feel you should be aware of."

"...increased risk of CBD has been found..."

"We feel that this information would be important to share with your doctor at your next yearly visit to allow for better patient care."

Included as an enclosure was a fact sheet titled "Health Concerns for Workers who Worked Around Beryllium"

Wow!  My wife and I looked at each other wide-eyed.  This was interesting and so timely.

With the letter in hand, my wife and I went back to the pulmonologist with this new information.  He said that , "he had heard about Beryllium Disease in medical school and there was one question on a test he remembered", and "You'll be my first Beryllium patient."  Once again, my wife and I looked at each other knowing that this would never do.  We smiled politely, left and didn't make another appointment.

That's when my research into Beryllium related health problems began. 

 

Occupational Health - 50+ years later

I’m 70 years old and I have an occupational disease.  Being 70 years old with a disease is not that unusual, but what is unusual is that I was exposed to the disease causing agent over 50 years ago when I was just 17 years old. 

A culmination of serendipitous events that I will chronicle in this blog will tell about Chronic Beryllium Disease (CBD), its symptoms, causes and treatment from one who has it.  It is my hope that my experience may help others who may find themselves in this position now or in the future.  In all of my own research of the disease, I have not found any first-hand accounts of Chronic Beryllium Disease, also previously known as Berylliosis. 

I intend to change that -- this is my story…