Re: RE: [Mayo FOR KAREN

[Guest guest]

Hi ,Your frinds little girl has whats called situs invertus..I belong to a group called kartagener syndrome with the yahoo groups I am sure you will get all the info from the wonderful people in the group...the reason I am with them is because its group also have pcd(primary cilia dysfunction) which is what I have, related to the sinuses etc...hope this helps..would be interested how you get on....hugs Lee"K. " wrote:

Thanks ,

It ended up being a much longer process than I had thought. I resisted getting a second bronchoscophy at Mayo but decided I had to trust the new doc to see if he could figure out what was wrong.

He told me that unless I get another attack that further damages my lung, there is no reason why the bronch needs to progress. He just stressed the importance of treating any infection quickly and if I get short of breath or have symptoms (coughing up blood) to call and go to Mayo instead of just my local doctor. I feel like I at least have a plan and a year check up at Mayo to see how I'm doing. At least they gave me a little hope that I could at least keep the coughing and symptoms at the same level in stead of getting a lot worse quickly like the first doctor told me. My best friends daughter has her organs on the wrong side and is just now struggling with lung problems and she is only two. Anyone else know of similar situations. Apparently she is at high risk for bronchiectasis because her cilia point the wrong way.

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[Guest guest]

Thanks for the information, I know they are really trying to stay on top of her lung condition. It seems like she is sick all the time. __________________________________________________