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    • #14527
      Laura Denne
      Participant

      My husband just passed last week after an 8-year battle with IPF. It was quick and it was peaceful – and I am so very grateful for at least that part of his struggle.
      In talking with the local Veterans Administration about possible benefits available to survivors, they asked me about Bob’s service: when did he serve? was he in Viet Nam? Did I know if he might have been exposed to asbestos? Exposed to dioxin (Agent Orange)? I do not know. It certainly might have been a possibility.
      My question to the group (and this might be the wrong forum in which to ask it), is….does anyone know of any research that has been done into the correlation between dioxin and IPF? If I can dig up some facts or anything that might tie the two together, I might be able to apply for certain benefits available to Vietnam vets or their survivors. Please let me know if you are aware of any such research, or you have any ideas on how I might find such information.
      Thank you!

    • #14541

      Hi Laura,

      Thanks so much for writing to us, although I am so very sorry to hear of your husband’s passing. What a tough time for you, my deepest condolences to you and your family. This is such a cruel and unfair disease!

      I have heard of others asking this question in our forums. When I use the search tool (top right hand corner) and type in Agent Orange, this topic thread comes up: https://pulmonaryfibrosisnews.com/forums/forums/topic/i-am-looking-for-info-on-acquiring-pf-from-asbestos-exposure/   and this one as well:  https://pulmonaryfibrosisnews.com/forums/forums/topic/job-related-pulmonary-fibrosis-suspected-or-confirmed/

      The folks who contributed to these topic threads might be able to give you more details about any research and/or known correlation between Dioxin and IPF. Not sure if it would be helpful to reach out to them directly? Also, I wonder if contacting the Pulmonary Fibrosis Foundation would be of benefit to you at all, in terms of asking them if they know of any known correlations or research between the two?  Sorry I can’t be of more help Laura, but if I do find out anymore information I will be sure to pass it along to you. Let us know if you come across anything as well, if you wouldn’t mind?

      Thanks and again, so sorry for your loss.
      Kindest regards,
      Charlene.

      • #14558
        Bill
        Participant

        I have ipf and have been working with VA on getting compensation. I have several documents that do not directly tie dioxins to agent orange but do say that it may cause lung diseases being as it is a chemical.. If your husband was in Vietnam it is a very good chance he was affected. I also found a VA claim that has  approved compensation for IPF. In addition I had my doctor write a letter stating that agent orange may be connected to IPF as it is a chemical. If you can find a purple heart veterans or DAV or any Veterans association, they can help you with your application. I am using purple heart and have been very satisfied. Going through one of them will get it done quicker. I have saved all of the documentation on my computer but need to know how I can send it to you. My claim is still in process so I do not know the outcome. Like your husband I am in my eighth year.

    • #14568

      Hi Bill,

      Thank so much for taking the time to reply to Laura about your experience with dioxin and VA compensation. I definitely can’t be much help with this topic, so hopefully Laura sees your response 🙂 Goodluck with your claim Bill, hope it all works out the way you want it to.

      Warm regards,
      Charlene.

      • #14572
        Bill
        Participant

        Thanks Charlene,
        I pressed the wrong reply button. But I copied and pasted the same info I sent to you.

        BTW the banana ice cream recipe was awesome. ( I used a little too much milk but will compensate next time).

        • #14581

          No worries at all Bill!

          I got your reply, and edited it a bit to make it more visual/clear to those looking to read more about your experience on VA compensation (I didn’t edit any of the content though, not too worry).

          Really glad you liked the banana ice-cream recipe! It is my healthy alternative to going for ice-cream when I have a craving for it 🙂

          Hope you’re having a nice day!
          Charlene.

    • #14571
      Bill
      Participant

      Please see response on Charlene’s reply as I pushed the wrong reply button. (it won’t happen again).

      here is what I wrote: 

      I have ipf and have been working with VA on getting compensation. I have several documents that do not directly tie dioxins to agent orange but do say that it may cause lung diseases being as it is a chemical.. If your husband was in Vietnam it is a very good chance he was affected. I also found a VA claim that has  approved compensation for IPF. In addition I had my doctor write a letter stating that agent orange may be connected to IPF as it is a chemical. If you can find a purple heart veterans or DAV or any Veterans association, they can help you with your application. I am using purple heart and have been very satisfied. Going through one of them will get it done quicker. I have saved all of the documentation on my computer but need to know how I can send it to you. My claim is still in process so I do not know the outcome. Like your husband I am in my eighth year.

      • This reply was modified 3 years, 2 months ago by Charlene Marshall. Reason: formatting
      • #14583

        So grateful for your taking the time to reply Bill, and letting us know where you are in the process of VA compensation. It is my hope that Laura sees this and finds your response helpful. So glad you’re part of the forums!

        Charlene.

    • #14623
      gil
      Participant

      Laura Denne,

      I was exposed to Agent Orange but the VA denied my claim. The explanation they gave me was that it is possible that Agent Orange caused my IPF and that it is also possible something else did.   Since then, the Courts have in at least two cases ruled in favor of the veteran, when I return home I will posts links.  I have a good contact person in Sacramento California, are you near Sacramento?

      gil

      • #14626
        Bill
        Participant

        Yes I am in a city named Citrus Heights 20 miles North of Sacramento.

        • #14673

          Hi Gil,

          Would you have any interest in re-initiating your claim and seeing if you could be given any type of award/compensation given the courts ruling in favour of the veteran in two other cases? Just curious, as it sounds like you might have a worthy case to proceed with. Thanks in advance for providing any links that were helpful for you and for sharing your experience with the group.

           

          Charlene.

    • #14624
      Anne Philiben
      Participant

      I was told that my IPF and Agent orange exposure were not connected.   Should I fight?  I’ve already got 80% disability.  Interesting one of my friends also a Vietnam Vet had non-hodgkins and has now developed IPF. A discussion with friends two related  they knew people who had non-hodgkins and also developed IPF.  Could it be the chemo?

      • #14627
        Bill
        Participant

        As you know that is why it is called ideopathic. 🙂 There was two cases approved for F105 pilots because of the 7808 engine oils that gave out a mist. I also was in contact with the same oils by working on the same jet engines but it looks like they are looking the other way on this one.
        You would think with all of the people with ipf they could find a common cause.
        I have been subjected with so many chemicals in my aircraft maintenance career you would think I’d be glowing in the dark.
        Note: Always fight it. What do you have to lose. Contact Order of the Purple Heart or DAV or any veteran volunteer group to help you with an appeal. It costs nothing.

        • #14675

          Great information Bill, thanks for sharing!
          If people do choose to “fight” this please let us know of any tips or tricks that you find helpful or that might benefit others.

          Thanks in advance.
          Charlene.

      • #14674

        Hi Anne,

        Thanks for your reply to this very interesting topic. It makes sense to me that the doctor’s would automatically state that there is no correlation between Agent Orange and IPF, this is simply to keep patients from investigating further. It almost is a “safe” answer for them, which really seems unfair to patients dealing with this cruel lung disease. I have no experience with Agent Orange, or any type of chemical that might have caused my lung disease (as far as I know anyways) so I don’t really have any personal suggestions to share. That said, based on what Gil shared about two other cases being in favour of the Veteran, maybe it is worth it to fight further for 100% disability? I guess it totally is upto your energy and what you feel you can put into this “fight”.

        In terms of chemo and IPF, there is definitely a correlation here due to the toxicity of the medications. I know people who have been told that they developed PF secondary to treatment for different cancers. That seems completely unfair to me!

        Not sure if any of this helps? Just appreciate being able to talk it out with all of you …

        Regards,
        Charlene.

    • #14630
      Cooper P Abrams III
      Participant

      Bill,
      I too was in Vietnam (66-67) and exposed to agent orange and have IPF. Stayed in VA hospital 16 days, when they diagnosed it six months ago. They do tests but no treatment so far. I would deeply appreciate any information on the connection with this and IPF. IPF is a rare disease and cannot understand how I got it. I will gladly pay costs for the information. It would be great to have it mailed. I am partly disabled with diebetes. Thanks. [email protected]

      • #14643
        Bill
        Participant

        Cooper,
        There is no direct connection to ipf because of Agent Orange. (dioxin)

        There was a veterans that had their compensation granted anyway because it is a chemical and there is data that says chemicals can cause IPF. Weak I know but a letter from your doctor stating there may be a connection helps. Anyway I should know October or November if I have be approved. I will keep you in the loop to let you know yes or no. If yes we can proceed from there. The lung institute is one that says chemicals can cause lung disease. Meanwhile, you can search the web for ipf versus. Here is one that was granted 08/20/2014 . Citation number 1436189 Also my son has diabetes and says that it is covered by the VA but you have to fight for it. (keep after them)  I am waiting for him to call me and verify that.

        • #14677

          Thank you for all the helpful information regarding this Bill!

          In addition to a doctor’s letter linking chemicals as a cause of IPF, and information from credible sources including the Lung Institute as Bill said, I’d also do a literature review to see if any evidence-based literature reveals a correlation between chemicals (and what kind) and lung diseases such as IPF/PF. There is usually “no-arguing” with literature that is evidence-based, however, I still wouldn’t be surprised if the companies do fight it. If I can help with this literature search/review, please let me know. I don’t have a lot of spare time right now but quite enjoy finding literature to help a meaningful cause, which I believe this is of course. Maybe Katie could help me with this too 🙂

           

          Thanks!
          Charlene.

    • #14676
      Cooper P Abrams III
      Participant

      Thanks Bill. IPF is just one of several health problems I have that I believe was related to agent orange because of no family or work related history. Hope they aren’t you claim.

      • #14678

        Curious what your doctor thinks about this Cooper? Have you brought up your concerns about Agent Orange to him/her?

        Charlene.

    • #14683
      Cooper P Abrams III
      Participant

      Charene my doctor’s are great, but they work for the VA. I have asked but they give vague answers. Not sure they don,t know or staying with the party (VA) line. One encouraged me to submit a claim, but do not have enough info yet. I know it will be hard to establish a connection.

      • #14686

        Thanks for letting me know Cooper. Glad your doctors are wonderful, and not surprised by their vague answers really. I suspect it is hard for them too, since no one really know whether or not there is a direct correlation and they likely have to be careful what they say to patients. If you have the energy to submit a claim to attempt the fight then I think it would be worth it, but likely is upto how each patient/individual is feeling.

        Take care,
        Charlene.

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