Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 I am here after 2 weeks of waitting to get results back from biopsy.I will go to Doc at 10:00 and find out how all comes out.So right now I am getting very worried and praying all goes well.Will post after doc visit to let you all know what i find out Thanks for been there!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 - That is a scary story! I am glad that all seem to be doing well! I have a mole on my back where my defect is. We never thought much of it because my dad has moles so we figured I just inherited the " mole gene " . It is interesting though that they never looked into this very thoroughly when I was born...they knew I had some issues with my legs, but all they told my mom was that she needed to do exercises with me and I should be fine...guess they weren't totally correct. > > Hi , > My son was born with spinal bifida. At first we thought he'd never > walk, but ended up being just fine other than back problems. He has > Schurman's disease (sp) and had to watch out for what he lifts, > etc., but other than that he is just fine. > He and his wife are expecting a first baby and we had a horrible > scare yesterday. Ava, his wife called me in tears and said that the > drs ofc just called and they were sending them to genetics > counselling but couldn't tell her if the baby was ok or not. > Finally, I called Dellafave at Northwestern and she told me > what to ask. Ended up the state of Calif. requires genetic > counselling whenever there is a birth defect in one of the parents. > So this was routine. The thing that really scared Ava was that they > called to report her tests for genetic defects were negative (they > don't even come in as positive or negative!!!, just in ranges) and > to set up the genetic counselling. How dumb is that! Wouldn't tell > her anything more. Thank goodness for , she told us what to ask > and that did the trick. > Anyway, so far so good. We are pretty confident the baby is ok, > just a big scare. > I'm surprised you didn't ever know you had spinal bifida before > now. My son had a " dimple " (nice name for it) where the tail didn't > close properly. Pretty scary. In addition he had heart problems > and jaundice. Let me tell you, I had my tubes tied real quick!!! > Thomson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2007 Report Share Posted June 13, 2007 Actually didn't have to fly to Cleveland. They called her at home to tell her the liver tested positive for Hep C. Still a dizzying experience though - as these transplant experiences almost always appear to be! I wrote her I was gonna have to take some Dramamine before reading her next post on her CaringBridge site. Holy Roller-coaster ride! Wife of Fred, PSC 03/04, UC 03/06 > > > > This morning I woke up to a message from saying that they had > > to turn down the liver because it had hep. c. ... > Quote Link to comment Share on other sites More sharing options...
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