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Any WG patients in the US area and where?

Posted , 26 users are following.

linda98568
linda98568

Hi All:

I'm located in the Washington state area, was just curious how many US based WG patients are on this network?

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  • susan4321
    susan4321 linda98568

    Posted

    Hi Linda - how long did they take to diagnose your husband? Sounds so trying.  Hope his recovery continues to bring good improvement!!

    Susan

    • linda98568
      linda98568 susan4321

      Posted

      Hi Susan4321,

      Actually I'm the one with Wegener's. It took almost a month for the doctors to figure out what was wrong with me, I kept going to the hospital saying I couldn't breath & my heart felt funny, they would run the standard cardiac tests & say nothing was wrong with me & send me home. I even got referred to a cardiologist who just said I was "fat", & needed to lose weight.

      Finally on thanksgiving day, I had an "event" they had to ambulance me to Seattle, they found fluid around my heart & in the lining of my left lung, my kidneys were shutting down & they contacted my husband to say that they weren't sure I was going to make it. I was in the hospital for 9 days, it's now been almost 7 years (this Thanksgiving) since that first attack & haven't had another episode. So I count my self very fortunate.

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