SandyCheeks
New member
Hi there! I have been hanging around this site for a while, wondering if I should post or not and after a few sleepless nights I decided to return.
My daughter (10) has had a long hx of asthma and ear infections. 3 years ago we had her tonsils and adneiods removed due to frequent infections. I thought that would end the illnesses. Wrong. She still was sick often, now with sinus infections.
After "accidently" seeing an xray result (docs told me it was fine), I found she had extensive sinus disease and scheduled her an ENT appointment. After a crazy amount of testing the only things we found were an allergy to dust, and a sweat chloride of 38. She had sinus surgery 8/07, and 8 weeks later she was having more sinus infections.
We have talked with a wonderful pulmonary doc at our CF center, and now are moving forward with some testing. We did another set of PFT's- now slightly decreased from last year, and also was extremely tired from performing these. She is scheduled for a bronchoscopy, cilliary biopsy and possible further genetics on Tuesday, 4/1. (first round of genetics came back neg).
I apologize for being long winded, but here are my problems (I have many and will only share a few with you<img src="i/expressions/face-icon-small-smile.gif" border="0">).
1. Any time I talk with friends and family, hubby included they say "you are over reacting about this CF thing. Our pediatrician thought it was odd I was still concerned regarding cf. I don't feel like I have anyone who understands how conflicted I feel. Some hours I think I would be thrilled to have a dx- maybe we could be treating my daughter more appropriately, and other moments I am paralyzed by emotion. I don't know what to feel.
2. I have seen alot of CF. Unfortunately what I have seen is the lousy, awful, heartwrenching side of it. I am a CF nurse (hospital). Most days with the job, things are good, but as you all know when CF is bad it is very bad.
I am so thankful for all of you because I have seen so much more of what "living" with CF is all about. Now I am struggling with the possibility of my daughter having to go through all of this- honestly it keeps me up at night.
Thanks for listening. I welcome your input. <img src="i/expressions/heart.gif" border="0">
My daughter (10) has had a long hx of asthma and ear infections. 3 years ago we had her tonsils and adneiods removed due to frequent infections. I thought that would end the illnesses. Wrong. She still was sick often, now with sinus infections.
After "accidently" seeing an xray result (docs told me it was fine), I found she had extensive sinus disease and scheduled her an ENT appointment. After a crazy amount of testing the only things we found were an allergy to dust, and a sweat chloride of 38. She had sinus surgery 8/07, and 8 weeks later she was having more sinus infections.
We have talked with a wonderful pulmonary doc at our CF center, and now are moving forward with some testing. We did another set of PFT's- now slightly decreased from last year, and also was extremely tired from performing these. She is scheduled for a bronchoscopy, cilliary biopsy and possible further genetics on Tuesday, 4/1. (first round of genetics came back neg).
I apologize for being long winded, but here are my problems (I have many and will only share a few with you<img src="i/expressions/face-icon-small-smile.gif" border="0">).
1. Any time I talk with friends and family, hubby included they say "you are over reacting about this CF thing. Our pediatrician thought it was odd I was still concerned regarding cf. I don't feel like I have anyone who understands how conflicted I feel. Some hours I think I would be thrilled to have a dx- maybe we could be treating my daughter more appropriately, and other moments I am paralyzed by emotion. I don't know what to feel.
2. I have seen alot of CF. Unfortunately what I have seen is the lousy, awful, heartwrenching side of it. I am a CF nurse (hospital). Most days with the job, things are good, but as you all know when CF is bad it is very bad.
I am so thankful for all of you because I have seen so much more of what "living" with CF is all about. Now I am struggling with the possibility of my daughter having to go through all of this- honestly it keeps me up at night.
Thanks for listening. I welcome your input. <img src="i/expressions/heart.gif" border="0">