I am looking for info on acquiring PF from asbestos exposure.

[Charlene Marshall]

Hi Al,

Thanks for joining the PF forums and contributing this post… it is a good question, and I suspect others might be interested in the answers that arise as well.

I can’t say this is something that I am familiar with, as my diagnosis is idiopathic but I do know some people on these forums have work-related PF due to being exposed to hazardous materials, such as asbestos. Were you diagnosed with IPF or PF secondary to something such as a previous illness/treatment, toxins, etc? Does your doctor suspect that asbestos might be the cause? Just curious to obtain more information.

If you’re interested, this looks like a credible link to take a look at regarding asbestos-related PF: https://www.ncbi.nlm.nih.gov/pubmed/1892312  

It might help with some answers to start? I’m sure other wonderful members of the forum will contribute to your post as well if they can.

I look forward to getting to know you a bit more Al.

Sincerely,
Charlene

[Al Oliver]

Hi Charlene, thank you for your reply. I was diagnosed with IPF. Only recently after more research did I find that asbestos can cause PF, and that asbestosis is identical to PF. So, I have become interested whether or not my exposure to asbestos could be reponsible for my IPF. In my reading so far, I have found no  definitive explaination as to how long I have to be exposed to the smoke carrying asbestos particles throughout the ship after the explosion. All the pipes covered with asbestos throughout the boiler room disintegrated during the fire, and the subsequent smoke filled the ship. We fought the fire for 24 hours. Since this is the only time I have been exposed to asbestos, I believe my ingestion of smoke carrying asbestos particles has caused my PF. In 2012 when questioned by my doctors, about how I may have acquired it, I hadn’t recalled this incident. Now I have a great deal more interest. Hopefully someone can verify if my exposure timeframe can result in the particles being ingested into my lungs causing the diagnosis of my fibrosis?

I look forward to any who could shed some light on my situation.

[Charlene Marshall]

Hi Al,

Thanks so much for your reply. I can certainly understand your curiosity around this and a desire for more information. Now that you have recalled this incident, have you brought it up with your doctors since?

When I was diagnosed with IPF (two years ago this Saturday) I remember wracking my brain for what could have caused this disease for me. I still find that I do this, on the days where I am feeling particularly sad or that this disease is unfair. I haven’t been able to recall a particular incident though to bring it up to my doctors.

I would wonder if there is a definitive timeline about exposure to asbestos that would lead to a PF diagnosis? I wonder this because there might also be multiple other factors to be considered such as well, such as density of the smoke and particles within it. This would be very interesting to learn more about. If others’ are reading this column, do you have any further information to share?

I could also promote this post anonymously on our Facebook page if you would like Al? There is still a following of people on Facebook that we would love to bring over to this platform to discuss issues and questions posed by patients. I could post this and then get the answers back to you on here, if this would be helpful? Please let me know. I’m just trying to think of other ways to generate answers for you (and me, I’m curious now too) from patient responses/experiences.

Chat soon,
Charlene

[Al Oliver]

Charlene, I do not do F/B. However, if you think you might draw some comments to my discussion with you without using my name, please feel free to do so. I will be discussing this recent recolection soon with my doctors. I am also trying to reach out to other crew members who may have lung issues and similar questions. It has now been almost 49 years since the explosion, and by the way, killed 4 of my shipmates that day. So, whatever I can uncover over the next few months will help me understand whether this incident was the cause of my disease.

You mentioned you were diagnosed with IPF 2 years ago. Since I have been living almost 6 years since diagnosis, my best advice to you and others is continue to live your life, as I have lived by this quote by Vivian Greene, “We all go through storms in our life, but we have to learn to dance in the rain”. So, I have continued to dance, albeit a bit slower at age 72.

Warmest regards,

Al

 

[Charlene Marshall]

Hi Al,

I just wanted to share that I’ve received some wonderful posts from people on Facebook regarding your question (I posted anonymously, so I didn’t mention your name :)) about asbestos-related IPF. I am going to compile them tonight and post them here for you to have a read though. Lots of people sharing their experience, so I’m looking forward to getting their responses back to you!

Warm regards,
Charlene

[Charlene Marshall]

Hi Al,

Below are all the comments that came in from our anonymous post to Facebook regarding the asbestos-related question about IPF. We simply posted that this was a question we were wondering about, and many people shared their experiences. I have posted them below for you, and they are verbatim as people shared them…

• “That is what the doctors told my husband, when he was first diagnosed. They were sure it was from asbestos, because of the type of work he had done in previous years. But we have not proof either way, he was never able to have a lung biopsy to find out for sure”

• “My dad worked for ICI many yrs ago only for 6mths as a result was diagnosed with plural plaques around 11 yrs ago then 9 yrs IPF was diagnosed?? Maybe a coincidence may not no one will give us a definitive answer”

• “I wish I knew what caused my late husband’s PF. I do know he was exposed to asbestos, agent orange and jet fuels, de-icers,& the foam used at airplane crash sites / fires.”

• “My dad was a farmer and also worked for a sign company with paint fumes. He’s had PF for almost five years. On 5 liters around the clock. He’s 90 years old.”

 

• “I’m not sure they confirm or deny. I said I though mine was caused when my lung was burned by radiation; and they reminded me there is no known cause.

• “Asbestos is only 1 of the 6 causes of IPF. But it is certainly a cause the others are farmers hand, smoking, environment, genetic and certain medication”

• “My Father and I met with a specialist at the Mayo Clinic and Duke, at which time he was told his Fibrosis was due to Asbestos”.

• “I have asbestosis and ipf but i have never be told of any link. i was offered a drug for ipf but as was claiming for asbestosis i couldn’t have it”

• “I had black mold exposure for over a year and they haven’t confirmed or denied.”

• “My dad was told they were 95% sure it was caused by asbestos”

• “My doctor asked me if I worked around asbestos. Not that I know of”

Hope these help a bit Al. Happy reading 🙂

Cheers,
Charlene.

[Charlene Marshall]

Hi Al,

So sorry for my delay in getting back to you. I actually fell quite ill the last couple of days and was admitted to hospital, so I am a bit behind in replying to everyone on the forums. Thankfully I am on the mend now!

I will post your question (anonymously, without sharing your name for sure) on our Pulmonary Fibrosis News Facebook page to see if I can generate some discussion around PF and asbestos exposure. My guess is that this is a topic / question that many others have considered as well, so they might have some good insight to share. I will keep an eye open for others’ responses and post them back here for you.

I look forward to hearing how the discussion with your doctor about this goes, and what he or she thinks about this incident causing your IPF. I was actually chatting to another forum member previously about their role in the cleanup of 9/11 and what types of diseases likely resulted from that (including IPF) within the men and women who helped with the clean up after the attack on the twin towers. There are so many environmental considerations that can cause diseases within our lungs, and it is something I am still learning about myself. I am so sorry to hear that the explosion killed some of your shipmates. That whole experience must have been awful for you.

I love the quote you shared! I actually keep a little notebook where I add many of my favourite quotes…. I will be adding this one to it. And, my reading it today is very timely as I was diagnosed two years ago today and not quite sure how I am feeling about it. I almost made a Facebook post on my page about being grateful for each day and recalling the last two years but I couldn’t bring myself to do it. It felt too cliche. So, I will continue to ‘dance on’….thank you again for sharing.

I will be in touch as soon as I have some responses for you from others about the asbestos and PF. Take care Al and chat soon.

Warm regards,
Charlene

[Hedi]

Hi Al

My mom was exposed to asbestos for 10 years starting from 45 years ago until 35 years ago. She was born in 1946 and was a chemical engineer worked in a lab. They used asbestos as a thermal insulation in their lab and they put their hot tools and pans on it.

Last year she was diagnosed with stage 4 cancer and they tracked asbestos in her lungs. But they could never figure out were the cancer started from and just because it was so aggressive and she had high blood sugar, they just guessed it could have been from pancreas. Until her last moment the doctors still believed that the reason of her shortage of breath was pneumonia and the test results never showed cancerous cells in her lungs.

Regards
Hedi

[Charlene Marshall]

Hi Hedi,

Welcome to the PF forums and thanks for sharing a bit of your Mom’s story with us. Although, I am so sorry to hear of her lung cancer diagnosis. I hope that as more and more health officials are linking employment exposures to life-threatening illnesses, that employers really do endorse and enforce proper protective equipment. It saddens me that someone’s dedication to a career can be the cause of their chronic illness. Did they fully diagnosis PF on your Mom Hedi?

I am sorry your whole family had to deal with this. Thank you for sharing a bit of her story with us.
warm regards,
Charlene.

 

[Jim Wood]

I’m glad I saw your inquiry. I too, suffer from asbestosis as a result from active duty exposure Navy 1968. In perusing a VA claim, the VA uses a loophole “if no notations of asbestos or treatment for exposure” are in your medical records, then your claim will be denied. Please get in touch with me for more information.
Regards
Jim Wood

I researched and discovered there is in fact a procedure to adjudicate asbestos claims. I drafted a scathing letter and decided enough was enough and sent it to the Inspector General in Washington D.C. Here is that letter dated May 18, 2015
*******************************************
I hate to be knocking on your door, but my VA terminal claim has reached a new level of utter incompetence.

My suspicions of incompetence were confirmed by a congressional inquiry. The VA reported my VA claim status. I remain denied based on lack of evidence in my personnel service records, which contain nothing about exposure nor treatment for asbestos exposure. This is normal, and is well known, simply because it takes 45 or more years for asbestos exposure to manifest into a documental event such as asbestosis and lung cancer. Both of which I have contracted.

The VA employs this lack of service record documentation to routinely deny asbestosis claims. Secondly, the VA incorporates a 2002 chart, Military Occupation Specialty (MOS) Probability of Exposure to further determine service connection.
Fact: I had no MOS, just out of boot camp. I forego attending a formal military school by requesting brother duty. My first assignment was with my brother, on the USS Kilauea, undergoing new ship construction, Boston Naval shipyard, as a Seaman Apprentice. I worked on deck force, was the lowest man on the pecking pole (given all the nasty jobs), and helped the yard workers in moving their tools, equipment, and materials some of which contained asbestos. When we had the watch, my job was fire watch, to standby in the same compartment with a fire extinguisher during hot work and while asbestos was being applied to pipes and fittings. Little did I know how toxic the dust and fumes were. We were not given any safety instructions or equipment. It was common to work in areas before the ships ventilation or lights were even working (see lawsuit excerpts attached earlier). I did this for ten months in the shipyard before transferring to Radio 1 1/2 years into my enlistment, where I qualified for a MOS rating of minimal.

So, with nothing in my personnel service records about treatment for/or asbestos exposure and a Seaman Apprentice MOS rating of N/A, the VA concluded no evidence. Thus “no evidence”, became “the evidence” used to deny my asbestosis service connection.
Quote:
“We received your statement claiming exposure to asbestos during your duties aboard the USS Kilauea, but there is no evidence shown in your personnel records showing that your duties exposed you to asbestos. However, the evidence continues to show this condition was not incurred in or aggravated by military service”.

This decision goes beyond incompetence, is absolutely ludicrous, and smacks of criminal negligence. I have overwhelming indisputable evidence proving the contrary.
It even gets better. There is a third method the VA can employ to adjudicate asbestosis claims, but its use is shunned because (1) they don’t have to go beyond looking in personnel service records knowing nothing will be found and (2) a MOS rating has little effect in establishing a service connection decision, and in fact can actually count against the veteran if the MOS rating is minimal.

Here is a direct cut and paste of the VA’s M21-1MR, IV, Subpart ii, chapter 1 section H, page 29:

29. Developing Claims for Service Connection for Asbestos-Related Diseases

Introduction
This topic contains information on developing claims for service connection for asbestos-related diseases, including considering the latent period and type of asbestos exposure the responsibilities of the rating activity.
a. Considering the Latent Period and Type of Asbestos Exposure
Many people with asbestos-related diseases have only recently come to medical attention because the latent period varies from 10 to 45 or more years between the first exposure and development of a disease.
Note: The exposure may have been direct or indirect; the extent and duration of exposure is not a factor.

b. Responsibilities of the Rating Activity (Rater)
The rating activity is responsible for determining whether or not the evidence of record confirms the Veteran was exposed to asbestos during service, and ensuring that development is accomplished to determine whether the Veteran was exposed to asbestos (as a result of his/her occupation, for example) before or after service.

************************************
I then challenged (b) in the following statement:
A service connection decision should not and cannot be derived from non-existent service record remarks, due to the fact that it takes 45 or more years to develop into a documental medical event as noted in MR21’s introduction.
Current medical records must be allowed and employed as evidence. Including but not limited to; pathology diagnosis, CT scans, medical DBQ’s, and personal declarations as current supportive evidence of record.
To be fair, the Decision Review Officer needs to base a decision using current evidence of record as directed in M21-1MR (b).
Then and only then, adjudicate an asbestosis service connection using evidence from #1 and #2.

I need your assistance and case overview, in requesting the Seattle VA Senior DRO to review and make a service connection decision using my current evidence of record as per M21-1MR.
************************************************************************

Because of my deteriorating health (Terminal), I was given a federal case number and “Hand delivered” to Allison Hickey, the undersecretary of benefits. Within an hour, her team called the Seattle VA director demanding my case be reopened, that ALL my evidence be reviewed (not just looking in my service file for none existent records), and then render a decision. It took 48 hours for Seattle to review my evidence. In the meantime, I was hoping for 40% – 60% disability. When the smoke cleared, every contention was awarded and my disabilities totaled 210%. They only pay to 100% but I was awarded a Special Monthly compensation (SMC S1) for in home oxygen therapy.

[Charlene Marshall]

Wow Jim, thank you so much for sharing!

I read your whole post word-for-word and several times over. I can imagine so many others will find this experience interesting, and potentially helpful as more people begin linking their diagnosis to asbestos exposure. Is a VA claim, a Veteran Affairs claim? Sorry if this is a silly question, although it is a term I am unfamiliar with and I know it may be a US-based claim, and different in Canada.

I also had no idea that asbestos exposure takes 45 years to manifest into something of documentation that can be linked to illness. Wow! I hope others read this line specifically, so they know to be aware of this if they work in a potentially hazardous environment.

I am glad you were able to advocate for your case to be re-opened and I hope that the compensation you are receiving is adequate to cover your oxygen therapy. Thank you again for sharing this story!

Warm regards,
Charlene.