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Thread: Anyone near Rochester Mn?

  1. #31
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    thanks, i hope we can find someone closer as that is about 2-3 hour drive each way, but i still would like to get him startd there AT MAYO. THANKS SO MUCH FOR THE INFO

  2. #32
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    Default Hello Neighbor to the West!!

    I'm new to this. I live in the UP. I visited your fine Mayo Clinic 3 yrs ago to get the dx. I believe it was Dr. Utz that I saw. I've been back and forth with meds and remission--liver problems etc--only stayed away one year--more meds--hoping it stays away long enough for me to get pregnant again.
    See you on the boards--if I can do this correctly
    Jaime

  3. #33
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    Hi Jamie, did you have your first child before wegs or during remision? Glad that you are positive and in good hands. See you
    Jolanta

  4. #34
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    Hello friend in the up our son lives in the "up" near the airport, and our brother has a camp out the 55o. So where do you live? And do you still come to mayo in jacksonville ? Do you winter in fl?? If not hope you enjoy the winter, stay healthy, and safe

  5. #35
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    Hi hope i get a reply!1 did you go to mayo in jacksonville or mn? Dr said today that it would be a good thing for my hubby to go to mayo. I just have to convince him.

  6. #36
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    Hi DisneyLady,
    Since you live in Florida, it makes more sense for you to go to Jacksonville Mayo. If your husband needs convincing that you require a Wegener's specialist, please read this post to him :http://www.wegeners-granulomatosis.c...ity-check.html

  7. #37
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    I live in Rochester Mn so that is where I go to Mayo, but I also am a Mayo employee and can assure you that whether it be Mayo Jacksonville, Scottsdale or Rochester, you will get the best of care!

  8. #38
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    Smile Pregnant with Wegener's

    Well. I had symptoms around 18 but was miss diagnosed and just went on believing I had pneumonia all the time. I got pregnant when I was 23 while I was still coughing up blood. It was only a little....like the scab from my lung. During pregnancy my OB said it must be a gastric ulcer and put me on Nexium...there was nothing else he could do at that point.
    I delivered a healthy baby, nursed her, and went to the MD when I was in horrific pain when she was 3 months old. Then it was a local MD that sent me to Mayo and the rest is months of in and out on meds off meds. She turned 1 right before my lobectomy (the Wegs was so bad).
    I was in remission for a year then it came back. The meds actually worked this time, but I went off them to get pregnant again....i have to wait 6 months to be "washed out" from the methotrexate.
    thanks, Jaime

  9. #39
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    Default Jamie's Courage

    Jamie, I have great admiration and prayers for you. You certainly are someone that don't let the worries of this world get her down. I pray that you may have a healthy easy pregnancy and a healthy baby.
    We are in the process of getting my 72 year old husband to Mayo in Jacksonville,FL. He has been seeing a Infection disease doc. and had a visit this morn. His blood work from 3 weeks ago had his white blood cells down to 2.7(low) and his SED rate 122 up. His ANCA is OK. So I'm getting all his reports and making appts . Hoping your Wegeners will stay away for a long time. Marion

  10. #40
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    Quote Originally Posted by DISNEYLADY View Post
    His blood work from 3 weeks ago had his white blood cells down to 2.7(low) and his SED rate 122 up. His ANCA is OK. So I'm getting all his reports and making appts .
    Wow, those numbers are very bad. The WBC count is extremely low. He has a very high risk of getting an infection. Please keep him away from any possible sources-- public places, children, etc....

    A SED rate of 122 is extremely high.

    Ignore the ANCA-- it's not a useful measure of Wegs activity once diagnosis is made.

    How fast can you get him into Mayo? Please tell them his WBC counts and SED rate when you call, and let them know those results are already 3 wks old.

    This is very serious, especially given your husband's age. Please do whatever it takes to get him in asap.

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