I just found this site a couple of days ago, posted a couple of replys. I've been hoping for this type of site for a while (Why hasn't the CFF mentioned this from their website (do they now - haven't looked in awhile?).)
I was diagnosed with CF at age 14. I'll be 50 in Feb. 2007. I've always been on antibotics, do a nebulizer treatment twice a day, and take pancrease. I add in Tobi when I feel like I am getting a cold. I don't do chest pt.
I have not been hospitalized in 15 years, and the last stay was voluntary, mostly because I wanted to get out of work for a while. I've had two great clinics that the doctors where the best. What was formerly St. Christopher's Hospital for Children in Phila. PA where I was diagnosed, and West Chester Medical Center. I guess growing up with the doctors there, they took the time to know me as a person, not just a patient number. (I saddly regret, I have outlived a number of them - They are missed.)
I moved to Phoenix AZ 10 years ago. I don't go to a clinic any more, the one here in Phoenix doesn't seem to 'get me' in the least, nor understand my needs as an active adult who has CF - they <b> STILL </b> send correspondence "To the Parents of:". I needed to have meds refilled and called to ask for a perscription to be called in. They insisted that they would not fill any perscription until I came in for an appointment. It's not like I was asking for something new or off the wall, just an updated perscription with a date in this century. Granted, I hadn't been there in over a year. Which brings me to the point of 'am I a freak?'
I have 'moderate' lung involvment, moderate pancreatic involvement, am more sterile than an operating room. I haven't a clue what my pft's are, and don't understand half of the acronym's you guys are using. (my fault because I don't go to the clinic, I suppose.) Have I just been 'lucky', blessed or blindly stupid? (I'd go with the stupid.) I'm not 'in denial', really. I'll deny that I am in denial!
I work 40+ hours/week, am on call (they like to think) 24x7 (database administrator). I have two houses I do my own maintenance and yardwork on (and one is a serious challenge.) I occasionally visit the gym (ok, I drive by it more than go in it) and take spinning classes where I huff and puff my way through them. Even though I have pancreatic insufficiencies, I'm a fat boy, primarily because I over eat (my method of dealing with depression and boredom.) I'm married, one (adopted) daughter and my grandson living at home with me.
I thought, when I found this site, maybe I had something of myself to offer you. But I'm not really sure at this point. Is this forum not for me? Am I truely a freak?
I was diagnosed with CF at age 14. I'll be 50 in Feb. 2007. I've always been on antibotics, do a nebulizer treatment twice a day, and take pancrease. I add in Tobi when I feel like I am getting a cold. I don't do chest pt.
I have not been hospitalized in 15 years, and the last stay was voluntary, mostly because I wanted to get out of work for a while. I've had two great clinics that the doctors where the best. What was formerly St. Christopher's Hospital for Children in Phila. PA where I was diagnosed, and West Chester Medical Center. I guess growing up with the doctors there, they took the time to know me as a person, not just a patient number. (I saddly regret, I have outlived a number of them - They are missed.)
I moved to Phoenix AZ 10 years ago. I don't go to a clinic any more, the one here in Phoenix doesn't seem to 'get me' in the least, nor understand my needs as an active adult who has CF - they <b> STILL </b> send correspondence "To the Parents of:". I needed to have meds refilled and called to ask for a perscription to be called in. They insisted that they would not fill any perscription until I came in for an appointment. It's not like I was asking for something new or off the wall, just an updated perscription with a date in this century. Granted, I hadn't been there in over a year. Which brings me to the point of 'am I a freak?'
I have 'moderate' lung involvment, moderate pancreatic involvement, am more sterile than an operating room. I haven't a clue what my pft's are, and don't understand half of the acronym's you guys are using. (my fault because I don't go to the clinic, I suppose.) Have I just been 'lucky', blessed or blindly stupid? (I'd go with the stupid.) I'm not 'in denial', really. I'll deny that I am in denial!
I work 40+ hours/week, am on call (they like to think) 24x7 (database administrator). I have two houses I do my own maintenance and yardwork on (and one is a serious challenge.) I occasionally visit the gym (ok, I drive by it more than go in it) and take spinning classes where I huff and puff my way through them. Even though I have pancreatic insufficiencies, I'm a fat boy, primarily because I over eat (my method of dealing with depression and boredom.) I'm married, one (adopted) daughter and my grandson living at home with me.
I thought, when I found this site, maybe I had something of myself to offer you. But I'm not really sure at this point. Is this forum not for me? Am I truely a freak?