as many of you know, its been a struggle to say the least to get CJ seen at a CF center and have the doc take me seriously.
The CF center in Rochester NY called me back today and he has an appt for Aug 7. They will be redoing his sweat test and will have a full work up while there. I am so happy to finally have someone listen. When I spoke to the nurse making the appt, I told her about the experience we had with the doc we saw before, and how he made us feel like we were wasting his time. She said she has heard several bad things about the doc we saw here and they have alot of patients from our area seen there. She reassured me that even if the doc doesn't think CJ has CF, he WILL order the genetic testing (doing whatever necessary to get insurance approval)to at least see if he is a carrier. She also said that the docs there are very willing to look at what could be causing his probs if it isn't CF.
I feel so relieved right now...best part is that my mom lives in Rochester so she is going to go to the appt with us, just in case I need some moral support. We only have to travel 1.5 hours away from home too!! Its like a big load has been lifted off my shoulders.
Just wondering, does anyone else here go to the CF center at Strong Hosp. in Rochester??
The CF center in Rochester NY called me back today and he has an appt for Aug 7. They will be redoing his sweat test and will have a full work up while there. I am so happy to finally have someone listen. When I spoke to the nurse making the appt, I told her about the experience we had with the doc we saw before, and how he made us feel like we were wasting his time. She said she has heard several bad things about the doc we saw here and they have alot of patients from our area seen there. She reassured me that even if the doc doesn't think CJ has CF, he WILL order the genetic testing (doing whatever necessary to get insurance approval)to at least see if he is a carrier. She also said that the docs there are very willing to look at what could be causing his probs if it isn't CF.
I feel so relieved right now...best part is that my mom lives in Rochester so she is going to go to the appt with us, just in case I need some moral support. We only have to travel 1.5 hours away from home too!! Its like a big load has been lifted off my shoulders.
Just wondering, does anyone else here go to the CF center at Strong Hosp. in Rochester??