User Tag List

Likes Likes:  0
Page 1 of 3 123 LastLast
Results 1 to 10 of 29

Thread: First pregnancy - super scared.

  1. #1
    Join Date
    Aug 2014
    Posts
    15
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default First pregnancy - super scared.

    I was diagnosed with WG and end stage renal disease 7 years ago - I've been in remission for almost 4 years and my kidneys have improved a lot.

    My husband and I did a lot of planning and talking to doctors before we decided to get pregnant - and we were told by all my doctors it would be safe.

    I saw high risk pregnancy doctor last week and he had nothing but HORRIBLE news for me. He told me I should terminate my pregnancy or I'm going to die and possibly my baby. He said, "this pregnancy is going to be a real nail bitter for you" - he told me very awful things and I haven't been able to shake it since I saw him. He said for sure I'm going to get pre eclampsia - without a doubt.

    I was on 50mg of Imuran before getting pregnant and have decided to be offof it until I'm 20 weeks. I am 13 weeks now and I feel great. My kidney labs are better than they ever have been.

    I just want to hear about other successful or not successful pregnancies with WG.

    Thanks.

  2. #2
    Join Date
    Apr 2013
    Location
    Orlando, Fl
    Posts
    742
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Please read the following book, "Alicia - My Battle with Wegener's". It's available on Amazon. She is a member of the forum and her husband wrote a book about her journey with the disease and through her healthy pregnancy. http://www.wegeners-granulomatosis.c...pregnancy.html this is an excerpt from the book. Please don't let the doc you talked to scare you. I would definitely find another ob doc. Good luck.
    Last edited by windchime; 08-19-2014 at 10:51 AM.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


  3. #3
    Join Date
    Aug 2014
    Posts
    15
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thank you - I will for sure!

  4. #4
    Join Date
    Jul 2010
    Location
    Blacklick, Oh
    Posts
    1,399
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    What a horrible thing to tell you. I'd look for another doctor as Cindy suggested.
    ~ Bob

  5. #5
    Join Date
    Aug 2014
    Posts
    15
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    He's not my regular obgyn, he's one of the high risk doctors that are co-managing.

  6. #6
    Join Date
    Aug 2014
    Posts
    15
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Also, my sister went on a business trip to a medical school in Virginia and she met a lady there that had lupus and has been trying to get pregnant for 7 years. This lady finally got in to see one of two perinatal lupus specialist and told her, her medication is prohibiting cell development and that's why she's not getting pregnant. So as long as she temporarily stop Rx she'll get pregnant.

    Super long story short, this doctor told her pregnancy have the ability to cure immune diseases. Now I don't know the specifics if it's temporary or what - but I kinda believe it. I'm 13.5 weeks along and ALL my lab numbers have been better than ever. Even without any medication (only taking prenatal vitamin). It's like I don't have kidney disease or WG. Definitely something I'd like to know more about and thought I would share with anyone interested.

  7. #7
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Right now, that doc is treading dangerous waters...that's the 'old' thoughts on the effects of WG. When I first started researching I thought I was a dead man walking. I found out the real schtick later on. As long as your current health is good or better, you and the baby will be fine with or without suppressants. Tho not pregnant, I questioned being around physically stressful situations and my pulmy said that as long as I ate well, stayed fit as possible, and kept up my drug protocols, and tried to keep clean in unclean situations, I would be just like anyone else out there...simply: we're all at risk for diseases all the time, just how you treat them. There is some research that suggests a pregnancy is good for one's health...don't even go there guys. Anyway, less worries makes for less stress which makes for a better response to your condition. Just keep on ALL your numbers. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  8. #8
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,371
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by JillianDudo View Post
    He's not my regular obgyn, he's one of the high risk doctors that are co-managing.
    Sounds more like a medical malpractice ambulance chaser (oops - I mean attorney) than a doctor...

    Hope all continues to be well with you and the little one!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  9. #9
    Join Date
    Aug 2014
    Posts
    15
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thank you everyone for the responses. I finally tablecloth to my rheumatologist and he told me to never see that doctor again. He said that doctor obviously knows nothing about WG and has no ground to stand on saying those things. That definitely made me feel better!

  10. #10
    Join Date
    Aug 2014
    Posts
    15
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Finally got to talk to my *** not tablecloth lol

Page 1 of 3 123 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
  •