Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Well, I have relatively moderate disease and only barely discernable clubbing; many of my friends much older than I have none; my own " kid " wcf has more clubbing than do I and appears to be in spendid shape. Any chirrosis of the liver can aggravate this, as well; I have a slight amount, but have never had a liver pain in my life and the last biopsy was better than the previous one. Now, I am only an example of one, as is my child. Many others on list will have far more to say about this than do I. The color of the nails may be more important; pink is always better than blue-grey, of course, but even that varies. You will get lots of responses on this one. And my toes are far more clubbed than are my fingers, for what that is worth! Love and luck, n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Thank you n. Its great to hear from you, its been far too long.. We bought a house in Delaware so we have been very busy this summer, hopefully now that school is starting again things will get better. We are moving our kids to the country. No pollution that you can see, not like now right across the river from Philadelphia. Anyways, thanks on the info on clubbing, I get real nervous when new stuff comes up, sometimes I think I have a real handle on this stuff, and other times I feel like I am learning everything all over again. I sure do appreciate all the info from you guys. n, thanks again, will talk to you later. Love and hugs, , mommy of 4, 4 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Oh I know exactly how you feel!! Today I read a story about a little girl in Australia that got Cepacia at age 10 and that's all I have been thinking about. I am so scare and I feel so helpless! Well, this is rather a masochist behavior but is one of those things that is always there. All I have been doing today is just holding a and telling her how much I love her, she thinks I have gone totally bonkers. I have always been the type of person that feels like if something is out of your hands then don't worry about it, but when it comes to your children is a whole different ball game. Sorry I am just letting go, before I blow up. mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf > Thank you n. Its great to hear from you, its been far too long.. We > bought a house in Delaware so we have been very busy this summer, hopefully now > that school is starting again things will get better. We are moving our kids > to the country. No pollution that you can see, not like now right across the > river from Philadelphia. > > Anyways, thanks on the info on clubbing, I get real nervous when new stuff > comes up, sometimes I think I have a real handle on this stuff, and other times > I feel like I am learning everything all over again. I sure do appreciate > all the info from you guys. > > n, thanks again, will talk to you later. > Love and hugs, > , mommy of 4, 4 wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 , I know what you mean. When was about 3 I think, we got a culture result back from a bronch, I think, that showed that had cepacia. we, needless to say, pretty much freaked and it all happened around Christmas, and he had been diagnosed the yr or two b4 on Dec. 17....for over a month we were depressed, etc....but we did send the culture off to LiPuma and it turned out NOT to be cepacia, though even in LiPuma's lab it grew out as cepacia on the cepacia medium. So, I encourage everyone, if u get this diagnose, send it to Lipuma for verification!!!! many other bugs can grow on the cepacia medium they use, but LiPuma's lab can actually see what it is by doing the genetics on it, and if it is cepacia, can tell you if it is a bad strain of cepacia.... it also meant, btw, that we did not get to have Christmas with family, as my neice (only one then, but two now with CF) had CF as well.... So....this is our story....we are thankful, thats for sure... take care, Jen > > Thank you n. Its great to hear from you, its been far too > long.. We > > bought a house in Delaware so we have been very busy this summer, > hopefully now > > that school is starting again things will get better. We are > moving our kids > > to the country. No pollution that you can see, not like now right > across the > > river from Philadelphia. > > > > Anyways, thanks on the info on clubbing, I get real nervous when > new stuff > > comes up, sometimes I think I have a real handle on this stuff, > and other times > > I feel like I am learning everything all over again. I sure do > appreciate > > all the info from you guys. > > > > n, thanks again, will talk to you later. > > Love and hugs, > > , mommy of 4, 4 wcf > > > > > > [Non-text portions of this message ha Quote Link to comment Share on other sites More sharing options...
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