clinic opinions

tarheel · Dec 24, 2007

I currently go to a so-so/not so great CF clinic. After reading the bell curve article (hopefully you know what im talking about, I couldn't find it online again) I asked my doc. where the center was on the bell curve. His response was less than satisfactory, and when I pushed him I found out it was on the less-desireable end of the spectrum. They don't do regular PFTs, and when they do you have to schedule a seperate appointment, and it is a two hour ordeal. So usually the visit cosisits of listening to my lungs, which time has shown to be a VERY poor indicatory of how I am doing, even at my worst my lungs SOUND fine. And frankly, I think the best thing would be to get a second opinion and a better understanding of how im doing apart from the usual "she (key word) sounds fine" I am a proactive person, so I am looking for a clinic that would match that in their technique. I'm mainly just looking for opinions on your center, where it is and what hospital it is. Distance is no problem for us

tarheel · Dec 24, 2007

I currently go to a so-so/not so great CF clinic. After reading the bell curve article (hopefully you know what im talking about, I couldn't find it online again) I asked my doc. where the center was on the bell curve. His response was less than satisfactory, and when I pushed him I found out it was on the less-desireable end of the spectrum. They don't do regular PFTs, and when they do you have to schedule a seperate appointment, and it is a two hour ordeal. So usually the visit cosisits of listening to my lungs, which time has shown to be a VERY poor indicatory of how I am doing, even at my worst my lungs SOUND fine. And frankly, I think the best thing would be to get a second opinion and a better understanding of how im doing apart from the usual "she (key word) sounds fine" I am a proactive person, so I am looking for a clinic that would match that in their technique. I'm mainly just looking for opinions on your center, where it is and what hospital it is. Distance is no problem for us

tarheel · Dec 24, 2007

I currently go to a so-so/not so great CF clinic. After reading the bell curve article (hopefully you know what im talking about, I couldn't find it online again) I asked my doc. where the center was on the bell curve. His response was less than satisfactory, and when I pushed him I found out it was on the less-desireable end of the spectrum. They don't do regular PFTs, and when they do you have to schedule a seperate appointment, and it is a two hour ordeal. So usually the visit cosisits of listening to my lungs, which time has shown to be a VERY poor indicatory of how I am doing, even at my worst my lungs SOUND fine. And frankly, I think the best thing would be to get a second opinion and a better understanding of how im doing apart from the usual "she (key word) sounds fine" I am a proactive person, so I am looking for a clinic that would match that in their technique. I'm mainly just looking for opinions on your center, where it is and what hospital it is. Distance is no problem for us

tarheel · Dec 24, 2007

I currently go to a so-so/not so great CF clinic. After reading the bell curve article (hopefully you know what im talking about, I couldn't find it online again) I asked my doc. where the center was on the bell curve. His response was less than satisfactory, and when I pushed him I found out it was on the less-desireable end of the spectrum. They don't do regular PFTs, and when they do you have to schedule a seperate appointment, and it is a two hour ordeal. So usually the visit cosisits of listening to my lungs, which time has shown to be a VERY poor indicatory of how I am doing, even at my worst my lungs SOUND fine. And frankly, I think the best thing would be to get a second opinion and a better understanding of how im doing apart from the usual "she (key word) sounds fine" I am a proactive person, so I am looking for a clinic that would match that in their technique. I'm mainly just looking for opinions on your center, where it is and what hospital it is. Distance is no problem for us

tarheel · Dec 24, 2007

I currently go to a so-so/not so great CF clinic. After reading the bell curve article (hopefully you know what im talking about, I couldn't find it online again) I asked my doc. where the center was on the bell curve. His response was less than satisfactory, and when I pushed him I found out it was on the less-desireable end of the spectrum. They don't do regular PFTs, and when they do you have to schedule a seperate appointment, and it is a two hour ordeal. So usually the visit cosisits of listening to my lungs, which time has shown to be a VERY poor indicatory of how I am doing, even at my worst my lungs SOUND fine. And frankly, I think the best thing would be to get a second opinion and a better understanding of how im doing apart from the usual "she (key word) sounds fine" I am a proactive person, so I am looking for a clinic that would match that in their technique. I'm mainly just looking for opinions on your center, where it is and what hospital it is. Distance is no problem for us

bagged2drag · Dec 24, 2007

I go to UW Madison. It is a super clinic in terms of treatment, but not always as far as follow up. They are very proactive with care for the disease, we do PFT's every single appointment. As far as care for the actual disease goes, they are on top of the game. My only real qualms are dealing with some of the other symptoms of cf (arthritis etc) They are a medical college hospital, so along with my physician, there are often med students involved, and they blow off anything that has to do with pain, like I am lying or something.

I just started going to Froedert hospital in Milwaukee, WI too. I transferred a copy of my records over there almost a year ago because they have a cf specialist, whom I've heard great things about from Madison. Since I was already hooked up with Madison, I never went to a doc appt with the new doc in Milwaukee. Well, on November 30th, I ended up in the hospital with an obstruction and had to have surgery. Even though I never even met the cf doctor, they immediately brought her in to be involved with my care (in the 2 days I was waiting to find out if I needed surgery). My first impression is super great. She seems to care a lot about her patients. After meeting the first day, she told me she was off the next day. She still took the initiative to have her nurse get me a bunch of nutritional supplements to gain weight after I'm better. The next day, her nurse dropped off 3 packages (18 cartons) of Boost Breaze. She stopped in my room every day, except 2, during my 2 1/2 week stay at the hospital. She asked me about all aspects of my cf, and made it a point that we can concentrate on my arthritis and sleeping problems (I addressed this at my other clinic for about 5 years now, all they did about it was fungus and bacterial testing).

So for what it's worth, even though Froedert isn't a top clinic in the nation, and I don't have a lot of experience with them at all, I so far would have to recommend them. I can recommend Madison too, but mostly for the actual care of the cf (primarily lung) aspects.

bagged2drag · Dec 24, 2007

I go to UW Madison. It is a super clinic in terms of treatment, but not always as far as follow up. They are very proactive with care for the disease, we do PFT's every single appointment. As far as care for the actual disease goes, they are on top of the game. My only real qualms are dealing with some of the other symptoms of cf (arthritis etc) They are a medical college hospital, so along with my physician, there are often med students involved, and they blow off anything that has to do with pain, like I am lying or something.

I just started going to Froedert hospital in Milwaukee, WI too. I transferred a copy of my records over there almost a year ago because they have a cf specialist, whom I've heard great things about from Madison. Since I was already hooked up with Madison, I never went to a doc appt with the new doc in Milwaukee. Well, on November 30th, I ended up in the hospital with an obstruction and had to have surgery. Even though I never even met the cf doctor, they immediately brought her in to be involved with my care (in the 2 days I was waiting to find out if I needed surgery). My first impression is super great. She seems to care a lot about her patients. After meeting the first day, she told me she was off the next day. She still took the initiative to have her nurse get me a bunch of nutritional supplements to gain weight after I'm better. The next day, her nurse dropped off 3 packages (18 cartons) of Boost Breaze. She stopped in my room every day, except 2, during my 2 1/2 week stay at the hospital. She asked me about all aspects of my cf, and made it a point that we can concentrate on my arthritis and sleeping problems (I addressed this at my other clinic for about 5 years now, all they did about it was fungus and bacterial testing).

So for what it's worth, even though Froedert isn't a top clinic in the nation, and I don't have a lot of experience with them at all, I so far would have to recommend them. I can recommend Madison too, but mostly for the actual care of the cf (primarily lung) aspects.

bagged2drag · Dec 24, 2007

I go to UW Madison. It is a super clinic in terms of treatment, but not always as far as follow up. They are very proactive with care for the disease, we do PFT's every single appointment. As far as care for the actual disease goes, they are on top of the game. My only real qualms are dealing with some of the other symptoms of cf (arthritis etc) They are a medical college hospital, so along with my physician, there are often med students involved, and they blow off anything that has to do with pain, like I am lying or something.

I just started going to Froedert hospital in Milwaukee, WI too. I transferred a copy of my records over there almost a year ago because they have a cf specialist, whom I've heard great things about from Madison. Since I was already hooked up with Madison, I never went to a doc appt with the new doc in Milwaukee. Well, on November 30th, I ended up in the hospital with an obstruction and had to have surgery. Even though I never even met the cf doctor, they immediately brought her in to be involved with my care (in the 2 days I was waiting to find out if I needed surgery). My first impression is super great. She seems to care a lot about her patients. After meeting the first day, she told me she was off the next day. She still took the initiative to have her nurse get me a bunch of nutritional supplements to gain weight after I'm better. The next day, her nurse dropped off 3 packages (18 cartons) of Boost Breaze. She stopped in my room every day, except 2, during my 2 1/2 week stay at the hospital. She asked me about all aspects of my cf, and made it a point that we can concentrate on my arthritis and sleeping problems (I addressed this at my other clinic for about 5 years now, all they did about it was fungus and bacterial testing).

So for what it's worth, even though Froedert isn't a top clinic in the nation, and I don't have a lot of experience with them at all, I so far would have to recommend them. I can recommend Madison too, but mostly for the actual care of the cf (primarily lung) aspects.

bagged2drag · Dec 24, 2007

I go to UW Madison. It is a super clinic in terms of treatment, but not always as far as follow up. They are very proactive with care for the disease, we do PFT's every single appointment. As far as care for the actual disease goes, they are on top of the game. My only real qualms are dealing with some of the other symptoms of cf (arthritis etc) They are a medical college hospital, so along with my physician, there are often med students involved, and they blow off anything that has to do with pain, like I am lying or something.

I just started going to Froedert hospital in Milwaukee, WI too. I transferred a copy of my records over there almost a year ago because they have a cf specialist, whom I've heard great things about from Madison. Since I was already hooked up with Madison, I never went to a doc appt with the new doc in Milwaukee. Well, on November 30th, I ended up in the hospital with an obstruction and had to have surgery. Even though I never even met the cf doctor, they immediately brought her in to be involved with my care (in the 2 days I was waiting to find out if I needed surgery). My first impression is super great. She seems to care a lot about her patients. After meeting the first day, she told me she was off the next day. She still took the initiative to have her nurse get me a bunch of nutritional supplements to gain weight after I'm better. The next day, her nurse dropped off 3 packages (18 cartons) of Boost Breaze. She stopped in my room every day, except 2, during my 2 1/2 week stay at the hospital. She asked me about all aspects of my cf, and made it a point that we can concentrate on my arthritis and sleeping problems (I addressed this at my other clinic for about 5 years now, all they did about it was fungus and bacterial testing).

So for what it's worth, even though Froedert isn't a top clinic in the nation, and I don't have a lot of experience with them at all, I so far would have to recommend them. I can recommend Madison too, but mostly for the actual care of the cf (primarily lung) aspects.

bagged2drag · Dec 24, 2007

I go to UW Madison. It is a super clinic in terms of treatment, but not always as far as follow up. They are very proactive with care for the disease, we do PFT's every single appointment. As far as care for the actual disease goes, they are on top of the game. My only real qualms are dealing with some of the other symptoms of cf (arthritis etc) They are a medical college hospital, so along with my physician, there are often med students involved, and they blow off anything that has to do with pain, like I am lying or something.

I just started going to Froedert hospital in Milwaukee, WI too. I transferred a copy of my records over there almost a year ago because they have a cf specialist, whom I've heard great things about from Madison. Since I was already hooked up with Madison, I never went to a doc appt with the new doc in Milwaukee. Well, on November 30th, I ended up in the hospital with an obstruction and had to have surgery. Even though I never even met the cf doctor, they immediately brought her in to be involved with my care (in the 2 days I was waiting to find out if I needed surgery). My first impression is super great. She seems to care a lot about her patients. After meeting the first day, she told me she was off the next day. She still took the initiative to have her nurse get me a bunch of nutritional supplements to gain weight after I'm better. The next day, her nurse dropped off 3 packages (18 cartons) of Boost Breaze. She stopped in my room every day, except 2, during my 2 1/2 week stay at the hospital. She asked me about all aspects of my cf, and made it a point that we can concentrate on my arthritis and sleeping problems (I addressed this at my other clinic for about 5 years now, all they did about it was fungus and bacterial testing).

So for what it's worth, even though Froedert isn't a top clinic in the nation, and I don't have a lot of experience with them at all, I so far would have to recommend them. I can recommend Madison too, but mostly for the actual care of the cf (primarily lung) aspects.

tarheel · Dec 24, 2007

yea- a lot of the centers seem to blow off secondary issues related to cf. For about the past year my knee has been killing me, even though im on 2.4 grams of ibprofin per day- not sure it has much of a painkiller effect anymore. But the endocrin clinic has no idea what cfrd is- although i only have a mild form of it that is connected to prednisone. They just cant grasp the concept of things being connected to cf that dont affect your lungs- or the fact that i dont have diabetes all the time, just when im on prednisone. it gets really frustrating sometimes...

tarheel · Dec 24, 2007

yea- a lot of the centers seem to blow off secondary issues related to cf. For about the past year my knee has been killing me, even though im on 2.4 grams of ibprofin per day- not sure it has much of a painkiller effect anymore. But the endocrin clinic has no idea what cfrd is- although i only have a mild form of it that is connected to prednisone. They just cant grasp the concept of things being connected to cf that dont affect your lungs- or the fact that i dont have diabetes all the time, just when im on prednisone. it gets really frustrating sometimes...

tarheel · Dec 24, 2007

yea- a lot of the centers seem to blow off secondary issues related to cf. For about the past year my knee has been killing me, even though im on 2.4 grams of ibprofin per day- not sure it has much of a painkiller effect anymore. But the endocrin clinic has no idea what cfrd is- although i only have a mild form of it that is connected to prednisone. They just cant grasp the concept of things being connected to cf that dont affect your lungs- or the fact that i dont have diabetes all the time, just when im on prednisone. it gets really frustrating sometimes...

tarheel · Dec 24, 2007

yea- a lot of the centers seem to blow off secondary issues related to cf. For about the past year my knee has been killing me, even though im on 2.4 grams of ibprofin per day- not sure it has much of a painkiller effect anymore. But the endocrin clinic has no idea what cfrd is- although i only have a mild form of it that is connected to prednisone. They just cant grasp the concept of things being connected to cf that dont affect your lungs- or the fact that i dont have diabetes all the time, just when im on prednisone. it gets really frustrating sometimes...

tarheel · Dec 24, 2007

yea- a lot of the centers seem to blow off secondary issues related to cf. For about the past year my knee has been killing me, even though im on 2.4 grams of ibprofin per day- not sure it has much of a painkiller effect anymore. But the endocrin clinic has no idea what cfrd is- although i only have a mild form of it that is connected to prednisone. They just cant grasp the concept of things being connected to cf that dont affect your lungs- or the fact that i dont have diabetes all the time, just when im on prednisone. it gets really frustrating sometimes...

stressed · Dec 25, 2007