Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 Vickie, We will be praying for a fast recovery for your daughter. I live in St. Louis and Children's is one of the best. Please let us know how she is doing. Jan in St. Louis > > My 15 year old daughter has been diagnosed with this and is scheduled for > surgery next week at Children's Hospital in St. Louis, Missouri. We are > traveling from Kansas City for this surgery. She is very frightened as she is only > 15. They are removing her right middle lung lobe. Any words of encouragement > would be greatly appreciated. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Dear Vickie, I'm sending huggs and prayers for your daughter and best wishes for a speedy recovery.Sonny, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Are you sure some of you do not have an underlying "Cause" for brochiectasis? My 15 year old daughter and I just got back from St.Louis Children's hospital, which is involved with a research project called PCD. (Primary Ciliary Dyskinesia). Even though she was tested for and subsequently found not to have Immotile Cilia Syndrome, about 20% of subjects don't test positive for this disease, unless you do other testing. There are (4) centers in the United States that are being given government grants for this testing. The University of Washington,University of North Carolina @ Chapel Hill, The University of Colorado, and Washington University School of Medicine in St. Louis Missouri.About 6,000 people have been confirmed to have this disease, but they believe many more have been diagnosed with other diseases that are actually this disease. Please visit their website @ www.pcdfoundation.org or Genetic diseases of Mucolociliary Clearance @ http:/rdcrn.epi.usf.edu/ There are also websites available for the UK as well as Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Liz - how is the NPD test done?? , Portland, OR Reply-To: bronchiectasis To: bronchiectasis Subject: Re: (no subject)Date: Fri, 21 Jul 2006 21:29:32 -0400 (EDT)>Dear Vickie,>>Thanks again. Perhaps this is one of the pieces of the>puzzle. I will certainly look into the study and would>be interested in contacting the hospital that is>closest to Nova Scotia. Its good to know that the>tests are covered and it would be interesting to learn>from a PCD expert what there thoughts are about my>lungs.>>Has your doctor ever had a nasal potential difference>test (NPD)? This test is done to make a CF diagnosis>in difficult cases, and is use in other clinical>research work. Mine was positive.>>Hugs:0)> Liz in NS, Canada .... Where it rained today!>>>>e-mail:maryholt12@... or lungsformary@...>>Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0)>carepages.com name:maryelizabethholt>>) "Miracles happen with love....." ..... Please support your local children's hospital.... and "Give with all your might!">)Visit'>http://iwkfoundation.org/>)Visit.... Children's Miracle Network.... http://www.cmn.org/ )>>"I don't give in, I don't give up, and I don't take no for an answer."> ~Doris ~>>__________________________________________________> Quote Link to comment Share on other sites More sharing options...
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