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  1. #1
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    Default Hi Guys

    Quick update for all my new friends here.. been told it's COPD. On steroids and antibiotics and will be CT scanned again in a months time. Sorry I've not updated before but a bunch of family problems (unrelated) have all hit at the same time .. Thanks everyone for your concern really means a lot. Don't know what stage etc yet still in shock

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    Aylasnan, thank you so much for posting here and letting us know what the diagnosis was. I know you've had many prayers on your behalf, so I'm relieved to know that your cancer fears weren't realized. Both my parents had COPD and lived many, many, many years after their diagnosis. My dad had the whammy of having diabetes on top of his COPD, plus he had been a smoker for more than 40 years, worked around auto paint his whole life with no masks, and was around asbestos on old Navy ships. My mom never could quit smoking, even after her diagnosis, and had congestive heart failure, so she had that working against her. I know COPD is scary, but they have some good treatments around for it, so stay strong and hang in there.

    Praying your family issues work out well, too. Thinking about you!
    Teri from Texas
    Diagnosed w/WG March 2015
    "Lord my God, I called to you for help, and you healed me." - Psalm 30:2

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    Quote Originally Posted by Aylasnan View Post
    Quick update for all my new friends here.. been told it's COPD. On steroids and antibiotics and will be CT scanned again in a months time. Sorry I've not updated before but a bunch of family problems (unrelated) have all hit at the same time .. Thanks everyone for your concern really means a lot. Don't know what stage etc yet still in shock
    So it's not good but not nearly as bad as your fears, eh? x100 (sorry but I don't know how add a hundred consecutive happy faces)

    Gary

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    I'm so glad to hear it's not cancer! I'm sorry about the COPD, though. I know pretty much nothing about it, and am sure it is a scary diagnosis. But I'm encouraged by Teri's report of her parents living what sound like normal lifespans with it. I also know of at least one forum member who has it, and perhaps he will connect with you. Sorry about the family problems, too.... that on top of the medical issues would really be stressful. Keep us posted on any new developments in the WG, the COPD, or anything else. And always feel free to come here to vent and look for support.
    Anne, dx'ed April 2011

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    Still starts with 'C', still sucks, but I guess it is the much better - better than the alternative.

    Some new challenges ahead for you, but everything will be okay

    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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    Quote Originally Posted by Aylasnan View Post
    Quick update for all my new friends here.. been told it's COPD. On steroids and antibiotics and will be CT scanned again in a months time. Sorry I've not updated before but a bunch of family problems (unrelated) have all hit at the same time .. Thanks everyone for your concern really means a lot. Don't know what stage etc yet still in shock
    ...just wondering if you were tested for Alpha-1?

  7. #7
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    Quote Originally Posted by Aylasnan View Post
    Quick update for all my new friends here.. been told it's COPD. On steroids and antibiotics and will be CT scanned again in a months time. Sorry I've not updated before but a bunch of family problems (unrelated) have all hit at the same time .. Thanks everyone for your concern really means a lot. Don't know what stage etc yet still in shock
    I'm there with ya! I have COPD as part of the Wegeners package!
    I had to be Dx'd with COPD and then Dx'd with pneumonia and with in a couple months lost 2 lobes of the right lung due to a growth attached to a blood vessel! It was found not be cancerous as I have a history of cancer!
    It was 3 or so months after that, I flared and the Wegeners was revealed to the Drs who were trying to decipher my complaints over the previous 4 years!
    What it boils down to is that I have WEGS and COPD from the wegs, kidney involvement, obviously the lungs, and the left heart ventricle pumps too soft I guess???!
    The COPD is in the severe stage!
    Last Thursday, I had an appointment with my RA and I get a message on my phone saying that I am to cut back to one Cellcept a day because my liver numbers were elevated!
    I'm Ok with all of this but its frustrating with the wegs and you never know what will pop up next!
    As far as your stage goes, just take care of yourself, do what the Dr says, do pulmonary rehab no matter what stage! Its all good info.
    You are in for a life changing experience, you need to take care and listen to your body more than ever!
    As for me, I'm on 02, 24/7 , 2 liters and was advised by Pulmo that I should go to 3 liters with activity. Also, no more work or exertion! Walk if I want to exercise, but no more work!
    It sucks that its not curable but is tolerable if you accept and work around it!
    Have a good day!
    Nobody knows how we got to the top of the hill. But since were on the way down, we might as well enjoy the ride!
    James Taylor, Secret Of Life

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