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Thread: WTC First Responder and my first post

  1. #11
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    Birdie, I explained my tick tock comment to Don, and you can see why I made it. It was a very stressful day which I know is bad for us, I was up and ready to go with this test at 4:30 am, and I needed to know everything already, only to be told to sit on it for another week waiting, and not starting my second Med whatever that may be, because if I also have cancer it would be a whole different approach to my medication plan.

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    Quote Originally Posted by Age View Post
    Birdie, I explained my tick tock comment to Don, and you can see why I made it. It was a very stressful day which I know is bad for us, I was up and ready to go with this test at 4:30 am, and I needed to know everything already, only to be told to sit on it for another week waiting, and not starting my second Med whatever that may be, because if I also have cancer it would be a whole different approach to my medication plan.
    Cool, you've got the situation well understood and your tick tock thingy is not just fear. Also sounds like your doctors have it under control. You're very fortunate since that's not always the case.

    I think I've had two of the procedures you described but my doctors were not approachable enough to get a good explanation from them. All I was able to get was
    "It's not cancer"... then a good shot of their backsides as they went out the hospital room door. I have since learned to force communication, or at least try.

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    LOL, I didn't get the benefit of that tool for my lungs...I was out so they just cut a slice of pie from my lungs that looked suspicious on the CT...they were right, Mayo verified. I did get to see the entire inside of my sinuses tho...in color no less! Such a fun disease. Keep it arm's length if possible, take it seriously, but do NOT let it run/ruin your progress...ever. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hi Age and welcome.

    All of that dust could most certainly be a cause of your WG. Gosh that sucks. I hope you find the other person.

    All the guys above have given you the information that helps, I'm just thought I would pop by and say HI

    I hope you are back home very soon.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Welcome to the Forum. You are lucky to have a good doc and to catch the beast fast enough.
    9/11 sounds familiar... If I will remember where I read it I will add the link. Meantime I found this, some things to think about:
    http://www.wegeners-granulomatosis.c...lomatosis.html
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Hey DD, when you say they were right do you mean that you were also confirmed with cancer? and if so, does that change everything as far as meds are concerned?

  7. #17
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    No cancer; many thoughts on TB, cancer, etc. The slice was a sample of the WG in my lungs...it is the most certain way to dx GPA. Other ways are used (sinus, gums, etc.) if possible, but lungs are the surest way. Yes, cancer does affect the WG treatment; altho the drugs are of similar varieties they are much more potent for cancers. I'm sure there are others on here with both involvements to help with more specific info.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Welcome to the forum! This is an interesting thread. What do the doctors mean when they say it is a certified 911 disease?

    Lots of money and time has been spent trying to find the cause of gpa and I have been led to believe it was a genetic predisposition. Dr. Kathy Siminovitch at Mt Sinai in Toronto did the research. The first time I saw anything published about it was in a letter written by Dr. Siminovitch. The quote in the letter that we had all been waiting for was "we have pinpointed the precise genetic change which makes people susceptible to the disease – a world-first discovery in GPA." That quote was huge for us and we got kind of excited about it.

    Given that, have your doctors found anything specific that ties GPA to some compound that was released into the environment at the WTC's? I guess the next question would be, if they have tied GPA to environmental factors at the WTC's and that hundreds (thousands?) of people were exposed to the same environmental factors, then is there a higher incidence of GPA in the "WTC population" than there is in the normal population. If GPA is associated with something specific at the WTC's, then you would expect a higher incidence of the disease -- anyway, that's how they isolated specific diseases associated with agent orange among the Vietnam vets. This could really be a big deal if they have found some external factor that is linked to GPA.

    Along those same lines, none of us can say with 100% certainty that we have GPA. GPA is diagnosed by exclusion. That is, you discount all those similar diseases, such as rheumatoid arthritis which has a specific physical marker, and when you discount enough of them, then you assume its wegener's.

    There isn't any specific marker where we can say without question that we have GPA. As far as I know, the only thing that suggests I have GPA is the presence of granulomas in my lungs, sinuses, and pituitary. And, of course, a whole host of GPA-like symptoms. However, my C-reactive and ANCA have always been normal. But that's one of the difficult things about GPA -- you just can't tell for sure that you have it. Fortunately, the treatment for many of AI diseases is pretty much the same; immune suppression and steroids.

    Very cool if your doctors have found some association with 911 and GPA, though. Could you ask them what they think specifically ties the disease to 911? They might be on to something if they have isolated it to a specific compound.

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    Hello vdub,

    I will clear up that statement, and I apologize for the mixup, throughout this two month process that slowly evolved into this thing that's going to completely scramble my life, I wasn't really ready for the dramatic change, a few months ago my wife and i were in AC at the Trop, having dinner at the Palm and having a blast, a few weeks before that I was in Oriskany NY for a few days of training, afterwards I played the Friday night no limit hold em tourny at the Turning Stone Resort Casino and took second place, man was I flying high after that, driving back to the hotel. And in two weeks I'm booked for Vegas with a couple of good friends for the Big Smoke at the Mirage. Ok a little self pitty and back to 9/11, I registered with the WTC health program 10 yrs ago since there inception because I knew I was breathing a lot of bad **** down there , and I have been going for an annual checkup since, I think I initially signed up because it was a free check-up. How else can you Think. I owe everything to them, anytime I needed a referral for a new condition they were there, and I have been certified with several, last year when I was diagnosed with Melanoma because of a WTC referral I was really starting to love these people, because if it was up to me I would of let that mole go forever. The long process leading up to the diagnose of GPA from ANCA as well as a positive reading from a needle biopsy in my kidney was peppered with numerous CT's, MRI's, blood work, and a PET/CT all led by the WTC program. So when my WTC doctor called me after the findings and stated to me "don't worry I'm going to certify you, there is one other GPA certified person" this is what I meant about certified 9/11 disease. Ultimately WTC sends it to the government and they do the certification. I do not have that as of yet, it takes a couple of weeks. I can not talk specifically of the ties between 911 and GPA but I can tell you I read an article about a very high percentage of AI diseases among WTC responders.

  10. #20
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    Is a positive kidney biopsy considered positive proof of having Wegs (GPA)? Especially when along with high ANCA scores?
    Knowledge is power! Wisdom is using it to make good decisions!

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