User Tag List

Likes Likes:  0
Page 3 of 7 FirstFirst 12345 ... LastLast
Results 21 to 30 of 65

Thread: WTC First Responder and my first post

  1. #21
    Join Date
    Nov 2010
    Location
    ~46N1165W
    Posts
    1,938
    Post Thanks / Like
    Mentioned
    25 Post(s)
    Tagged
    0 Thread(s)

    Default

    Is a positive kidney biopsy considered positive proof of having Wegs (GPA)? Especially when along with high ANCA scores?
    I'm certainly not a doctor, but I wouldn't think so. I guess you mean a positive biopsy as showing the presence of a granuloma? I have granuloma's in several organs, but my rheumy has always told me that wegs was only his best guess. I suppose the more gpa symptoms you can gather together, the more apt you are to a conclusive dx, but, until markers are found, I don't know that it's ever 100%. It would be an excellent question for someone to ask at their next apt.

    Age,
    don't worry I'm going to certify you
    Certified for what? I guess I still don't get it. Is it like a service connected disability for vets that qualifies them for VA benefits?

    On edit --- I've been doing some research on this. Below is an interesting article on the subject. It looks as if auto-immune diseases and wtc exposure is still very much in the air.

    http://www.medpagetoday.com/Rheumato...matology/50548

    Age, was your exposure acute or chronic (defined in the article)? How many days?
    Last edited by vdub; 10-26-2015 at 09:01 AM.

  2. #22
    Join Date
    Oct 2015
    Posts
    12
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    The diagnosis reads as follows: right renal mass 2 cm, CT guided FNCB: negative for malignant cells. Necrotizing granulomatous inflammation with neutrophilic aggregates, suggestive of Wegener's granulamatosis. I apologize I'm reading the blood now, tested twice within 15 days ANCA was neg both times, the anti-proteinase 3 tested positive both times, first time and 100 and the second in the hospital at 168.

  3. #23
    Join Date
    Nov 2010
    Location
    ~46N1165W
    Posts
    1,938
    Post Thanks / Like
    Mentioned
    25 Post(s)
    Tagged
    0 Thread(s)

    Default

    suggestive of Wegener's granulamatosis
    "suggestive" :-) Yeah, that's sounds about right. No specific markers. I don't think they ever nail it down explicitly. I wish they could find some markers. Granulomas are a pretty good tell, but certainly not conclusive. I believe sarcoidosis also has granulomas.

    When I had my adrenal crisis, the report read "adrenal crisis suggestive of Addisons has not been ruled out". <snicker> I guess it must be a legal thing...

    But at least you are getting the treatment. Most AI's are treated pretty much the same.

    But anyway, back to the original question.... I guess your docs didn't find anything specific to connect the conditions at the wtc with wegeners? That's kind of a bummer. Most of us are always wondering "how did we get this"? Maybe someday we'll find out.....

  4. #24
    Join Date
    Oct 2015
    Posts
    12
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    You know I loved reading MAD magazine as a kid, anyway I am defined as chronic according to that article you sent me. I was down at the site about 6 hrs. after the second tower went down and I stayed the better part of the next three weeks at ground zero. Afterwards I was in a specialized unit doing identification on property ( I won't go into the name of the unit, i was in it prior to 9/11 and it was elite, I am not sure if you can be private within the forum, but I will let you know if you really want, I had very close facial contact with this property) assigned 12-24 hrs a week for 12 months at the Fresh Kills landfill doing identification, and eating on site in a large makeshift lunch tent very delicious, the landfill is where they brought all the debris from ground zero, we had to put it somewhere can't leave it laying around downtown Manhattan, pretty big crime scene don't you think? Yes certified is the first step to a service connected disability, which will be a long road. But more then that its the City covering my ass, the same way I ran to save lives for the city and the people of New York.

  5. #25
    Join Date
    Oct 2015
    Posts
    12
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    let me clarify I meant Acute exposure.

  6. #26
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    It's my understanding that we are said to be genetically pre-disposed to getting GPA or other autoimmune diseases, but that there are positively identified triggers, such as environmental dusts and infections, and that those pre-disposed people, when exposed to these triggers, would be the most likely to get an AI disease. Why one person at the WTC site would get GPA and another would get a different AI disease seems a mystery. It would stand to reason that a certain number of those working at the WTC site from the beginning, and for weeks, with inadequate respiratory protection, would be likely to get some sort of health condition or other from what they were exposed to. And also that there'd be a higher incidence of these conditions among any of the population living or working near there. Being genetically pre-disposed would just make it more likely. And we can't forget the stress of working under those conditions and seeing the things you must have seen. It's been said many times on here that stress is a factor in flares, and I would think, in getting GPA in the first place. Especially among those genetically pre-disposed, if that is indeed the bottom line.
    Last edited by annekat; 10-26-2015 at 01:16 PM.
    Anne, dx'ed April 2011

  7. #27
    Join Date
    Nov 2010
    Location
    ~46N1165W
    Posts
    1,938
    Post Thanks / Like
    Mentioned
    25 Post(s)
    Tagged
    0 Thread(s)

    Default

    I am not sure if you can be private within the forum
    Nothing on the forum is private and once its posted, it is there for a very long time. Even if you edit and delete, odds are good that the original message was already sent to people who subscribe to the thread. And, then, of course, don't forget google and all the other search engines. They grab stuff on the internet with amazing speed and you can always look at the cached sessions of most all internet pages. The internet is a wonderful invention, but very dangerous. You have to be very careful what you say. Social media, aka facebook, is particularly bad because it lulls you into a sense of security and you can be easily caught off-guard and put too much info out. I'll never have a facebook account. (sorry facebook fans)

    We do have private one-to-one e-mail, but really anything on the internet isn't 100% private. I rarely use my real name, even on this forum. Even my location is kept private although the coordinates will get you close. Only a few close friends on the forum have my real name and my real e-mail.

    I'm glad the city is taking care of you guys. I'm guessing there is a fair amount of PTSD, too. I can imagine it was like walking into a war zone -- actually, it was war zone IMHO.

  8. #28
    Join Date
    Oct 2015
    Posts
    12
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I read your story, very horrible and scary. It's brave how you can write like that, listing the facts, but I could imagine the pain behind it, I cant do it yet, I'm mad at the curse, it's so new to me, maybe I'm still in shock about my new life. Regardless where it came from we all share this at certain degrees and stages, yours obviously more severe then mine, but I think where will I be in five years from now, will the Melanoma come back and effect the GPA? and will this EBUS procedure on Tuesday find cancer in the lymph node in my lung? as the Doctor "suspects" I'm a Detective and think in terms of motive, cause, and result along with a lot of cynicism and doubt in between. The result is what scares me, I wish this was one of my cases, I investigate it, come up with the bad guy, arrest him, hand it over to the prosecutors to there job and move on.

  9. #29
    Join Date
    Oct 2015
    Posts
    12
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I totally understand about what your saying in regards to privacy and the internet, I have been using it for many years to find people along with other governmental programs and tools I use in cases. I get it, that's why I didn't mention my unit. But a good Detective can probably put it all together from my statements.

  10. #30
    Join Date
    Nov 2010
    Location
    ~46N1165W
    Posts
    1,938
    Post Thanks / Like
    Mentioned
    25 Post(s)
    Tagged
    0 Thread(s)

    Default

    I'm mad at the curse, it's so new to me
    The best advice I can give you and I think you'll get the same advice from most anyone on the forum is to not let this disease rule your life. Be vigilant about treating it, but, otherwise, try to do everything you normally would. We have lost a number of good people who were members of the forum, but they all gave it the good fight and lived life to its fullest. We have a map of forum members (see the url below in my sig line) and all the candles you see are members who have passed. I don't know how many candles we have -- too many, tho.

    My wife and I have tried to do everything we normally would have done for a couple of old retired people. Normally, we take our RV south for the winter and roam around to all the nat'l parks/monuments and museums. We have a lot of fun doing that, but it is a challenge to get blood tests and drugs while on the road. It took a while to figure out how to do it.

    Last year we decided to go international, which meant I had to take all my drugs with me and also be able to go across borders with the drugs. That, actually, didn't turn out to be much of a problem. We went to the UK twice, also to Ireland and France, then to Alaska, and, finally, a cruise to Tahiti. Disease wise, Tahiti was the most interesting situation (see posts 8 and 10). But, we haven't let anything hold us back. Many of us on the forum do international travel.

Page 3 of 7 FirstFirst 12345 ... LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •