Treatment, and by the way, "Talk to your doctor about all the potential side effects!"

At my September 2013 visit to National Jewish Health in Denver, Colorado, my doctor initiated a treatment regimen since there was evidence of progression of the Chronic Beryllium Disease (CBD).  I'm going to outline the drugs and dosages here.  Side effects will be my next post.

You've probably seen the commercial on TV about an inhaled drug called Symbicort.  It's the one where the father talks about his COPD and not being able to go fly fishing with his son anymore.  After Symbicort he is back on the river fly fishing with his son and grandson.  I can't fly fish and I don't have COPD, but I am on Symbicort now and a myriad of other drugs.

The preferred drug for the treatment of CBD is Methotrexate.  It comes in 2.5 mg. tablets.  My dosage instructions for Methotrexate are:

• Take 3 Tablets weekly for two weeks (all on Saturday)
• Take 4 Tablets weekly for two weeks (all on Saturday)
• Take 5 Tablets weekly for two weeks (all on Saturday)
• Take 6 Tablets weekly for six months (all on Saturday) 

I was told that Methotrexate takes six months to actually kick in and start working the way it is supposed to to as the doctor said, "Maintain and reverse the lung damage that is reversible."  Basically the goal is to stop the progression of the scar tissue in the lungs.  Because of the time lag, Prednisone is prescribed in conjunction with the Methotrexate to speed up the process of reversal and stopping progression.

My dosage instructions for Prednisone (5 mg. tablets) are:

• Take 4 tablets daily for one month
• Take 3 tablets daily for one month
• Take 2 tablets daily for one month
• Take 1 1/2 tablets daily for one month
• Take 1 tablet daily for one month
• Stop

I was also told to take a 1 mg. tablet of Folic Acid daily.  Apparently both drugs can cause Folic Acid deficiencies. 

Finally, I was given instructions for the use of a Symbicort 160/4.5 inhaler.

The prescribed dosage for Symbicort is:

• Two puffs twice daily.  The puffs are inhaled deeply after a long exhalation and held for 10 seconds.  I typically do this upon waking and then before bed.  The inhalation of two puffs are followed by a gargle with antiseptic mouthwash to prevent thrush (yeast growth in the mouth).  I know TMI!  

One thing I should tell you about myself is that I always follow doctors orders.  Always.  Maybe its because I became used to following orders in the Army, but I follow orders.  I was anxious about starting this regimen, especially with the potential for side effects, but I do it all religiously.  I'll tell you how its going soon.

For more information on the drugs, here are some links if you are so inclined.

Methotrexate:  http://www.drugs.com/methotrexate.html
Prednisone:  http://www.drugs.com/prednisone.html
Folic Acid: http://www.drugs.com/folic_acid.html
Symbicort:  http://www.mysymbicort.com/default.aspx

Back in Denver September 2013 -- Progress or Progression?

So a year ago in September 2012, my physician at National Jewish Health decided that we would take a "wait and see approach" relative to treatment of my Chronic Beryllium Disease (CBD).  Since 50+ years had passed since the exposure to Beryllium and my developing symptoms, that made perfect sense.  In September 2013 I traveled back to Denver for an annual follow up visit.  The same tests would be performed, except for a lung biopsy.

The tests repeated were a chest X ray, pulmonary function tests and the exercise tolerance test along with associated arterial blood draws. The consultation with my assigned physician gave me the following information:

1. Apparently in the past year, the pulmonary function test equipment had been upgraded to newer models.  The doctor advised me that the newer equipment was showing patients a result that was 5% better than the previous equipment.  My results stayed the same so that meant that there was a large possibility that my actual results were not as good as the prior year.
2. The exercise tolerance test with arterial blood draws, showed that I became fatigued quicker and as a result did not max out at the same heart rate that I was able to perform at the previous year.
3. In comparing the new chest X ray to the prior years X ray, the doctor displayed an overlay of the new and the old.  It was clearly evident that more scar tissue had formed on the lungs in the twelve months since my last visit.  The CBD was clearly progressing.  (See pictures below -- more cloudiness is evident)

September 2012

September 2013

With the evidence of progression of CBD in my lungs, the doctor suggested that it was time to treat me with proven therapies that have helped others with my condition.  He told me that, "this wasn't a death sentence or life threatening" and that the "majority of people treated, responded to treatment favorably."  The catch is that the drugs usually prescribed have many side effects.  A lot of side effects.

I am relieved and willing to try them to improve my energy levels and hang onto the quality of life that I have grown fond of.  I say, "Give me the drugs."  My wife says that I am always a good patient and do what the doctor tells me to do."  She's right, I follow doctor's orders strictly.  This will be no problem for me.  I'll share more about treatment in the next post.

To Sue or not to Sue...That is the Question

The words “I have Chronic Beryllium Disease” tumbled around in my brain, even before getting the final diagnosis.  Internet searches came up with not so pleasant reports of scarring over of lung tissues and eventual death.  Physical death is inevitable for everyone, but I’d prefer it not be from a progressive disease begotten from the job I had when I was seventeen.  The doctor assured me that it is not a death sentence and that if we see progression, there are effective treatments available. 

As I shared with friends and family members, the questions, “Did you talk to a lawyer?”, or “Can you sue the former employer?” always came up.  Of course, I researched the idea, but in the end I decided not to for several reasons.  Many friends and family have said that I’m sort of a life philosopher, so here is my philosophy on the subject.

The question I had to ask myself, first was How angry am I about this? Typically when you perceive that you have been wronged, the first impulse may be to get an attorney and to try to fix the wrong…How angry was I and what would it accomplish and how long would it take?  Then, if I chose to sue, as I went through the long process, how much more upset would it make me and would it gnaw away my insides.  

That’s when I gave thought to how much of my personal life had I lost up to this point and how much would a long drawn out lawsuit take up of my present personal life, my emotional life, my financial life and my physical health going forward.  I never lost a dime of income from Chronic Beryllium Disease and my personal life was not impacted.  I had a long business career and am now retired

Besides, the beryllium plant I worked in didn’t keep it a secret that the element was hazardous.  I think back to the days to when we showered at the end of the workday.  We would joke and chuckle about washing off all of the beryllium so that we didn’t get Berylliosis (new name Chronic Beryllium Disease CBD).  I guess we laughed not because we didn’t take it seriously, but just because the odds of getting it seemed so great. 

I remembered the times when I was a lab technician and I carried around hot beryllium tubes in what were likely asbestos gloves.  The thought never crossed my mind that I could get any kind of disease despite the warnings.  

Here I am at 70 years old, and I have CBD.  The bottom line is…CBD never cost me a day of work and I don’t believe that it had any impact on my previous life.  So the question became…do I see an attorney or do I take the settlement money that is offered by the Department of Labor and sign away my future right to sue in the future?

It was a seemingly big, complex decision, but in my mind it became a fairly simple one.  Since I wasn’t willing to take the time it could take for an attorney to “possibly” get me any money or how much would be left after the attorney fee was deducted, I decided to take the government’s offer.  For a government process, it turned out to be fairly easy and relatively painless.  I filed all the paper work, included the medical analysis from National Jewish Health and within two months I received my lump sum stipend.  In addition to the lump sum payment, they pay for 100% of medical treatments, care and associated travel expenses that I incur related to Chronic Beryllium Disease for the rest of my life.  The money was a help, but of course, I would rather have full lung function, especially since I was never a smoker, but...it is what it is.

In my head, I’m singing a couple of lines from the John Mellencamp song, Jack and Diane, “Oh yeah, life goes on.  Long after the thrill of living is gone.”  My life is going on quite well, and damn...I loved that job when I was seventeen.  Sing it with me:  “When I was seventeen…it was a very good year” – thank you Old Blue Eyes, Frank Sinatra.

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/

Beryllium Boy flies to the Mile High City

Now...I knew that I was Beryllium sensitive according to the results of my blood tests.  That made me eligible for medical expense coverage through the Department of Labor (DOL).  After contacting my case worker with the results, I received a special Health “Insurance” Card to be used for any expenses associated with Beryllium Sensitivity and beyond…the beyond to be determined.

I live in Florida, but wanted to go to Denver, Colorado to National Jewish Health (NJH).  Why?  One reason, okay two reasons.  They are the best in the nation for the treatment of Pulmonary Diseases and the biggest reason…they have a Beryllium Program and do Beryllium research! 

Having been to my local pulmonologist who told me, quite happily, that, “You’ll be my first Beryllium Patient”, I thought that a well defined Beryllium Program was a step in the right direction.  I would go west to the Mile High city and hope I could breathe up there.

NJH’s Beryllium program link:

https://www.nationaljewish.org/programs/prevention/beryllium

It was such a relief to talk to NJH.  I would get answers and they would set up a schedule for me to have the various tests done to determine my condition.  Obviously, they’d done it all before (which makes me wonder how big an issue Beryllium is) and clearly they were aware of the requirements of the DOL.  I was told by NJH that the following tests were needed evaluate my condition:  Pulmonary function test, exercise tolerance test, chest X ray, special blood draws and then have a bronchoscopy and a biopsy of my lungs under general anesthesia. 

With the complete package I received from NJH, I was able to secure approval from the DOL for the travel expenses associated with the trip.  Because of the lung biopsy, I was allowed to have my wife come along as well.

The NJH schedule was precise and set over three days.  I rarely had to wait between tests for more than five minutes. 

First were the pulmonary function tests which consisted of breathing exercises during inhale and exhale with breathing through your mouth with nose clips.  Here is a link that describes the test:

http://www.nationaljewish.org/programs/tests/pulmonary-physiology/pulmonary-function/inspiratory-expiratory-pressures

The next test was an Exercise Tolerance test which consisted of being hooked up to an EKG, monitoring by computer and wearing a mask that measured respirations in and out.  In addition, I had an arterial catheter in my right wrist in the Radial artery. 

Here is a link to the information on the Exercise Tolerance test:

http://www.nationaljewish.org/programs/tests/pulmonary-physiology/exercise/exercise-tolerance

And a picture of me, “Beryllium Boy” the nickname my brother recently gave me.

I pedaled on the bike for 8 minutes.  After each minute, the technician drew a vial of blood to check oxygen levels during the exercise.  Each minute the work level went up on the bike, so it is harder to pedal.  The revolutions must always be above 70 rpm.  The last two minutes were extremely difficult.  The technicians coached me on, all three of them and my wife at one point cheered as though I was competing in a Tour de France.  It was exhausting. 

The next day, I had a chest X-ray and a blood draw.  Extra blood was taken for Beryllium research that I volunteered for.  That afternoon we had a meeting with the assigned doctor of my case.  The bottom line was that for someone at my age and height…my lung capacity was a 69% of what it should have been.  He showed us the X-rays and explained and showed us the scar tissue in my lungs.  He also explained the procedure I would have the next day –the bronchoscopy.

Here is a link that describes the bronchoscopy:

http://www.nationaljewish.org/programs/tests/bronchoscopy

Because I had been sedated, the doctor advised my wife that the final results would be given to me the next day at our consultation.

I knew I was in the right place.  Answers were forthcoming…tomorrow.

The following is a link to information on NJH’s Division of Environmental and Occupational Health Sciences if you’d like to know more about their programs.

http://www.nationaljewish.org/about/depts/medicine/environmental

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