Went to Mayo Clinic Cystic Fibrosis Center

A

AnnaH

New member
<div class="FTQUOTE"><begin quote>IMHO, I think it's a bit irresponsible to be recommending a non accredited center when there are two good centers an hour and a half from Mayo. </end quote></div>
Me too. The fact that a clinic dosn't bother to get certified by the CFF would seem odd to me. It'd be interesting to find out why.
I'm guessing this center has a docotr who knows something about CF, with a team instead of an actual clinic? I know of a hospital with that arrangement, but it's very far away from a CF center. Otherwise they should have something on the website.
I don't see why they would have a CF center and not advertise. I know my hospital plays it for all it's worth- and they get a fair ammount of donations from it.

I think atypical CF is CF that dosn't present like it's out of a textbook.
 
A

AnnaH

New member
<div class="FTQUOTE"><begin quote>IMHO, I think it's a bit irresponsible to be recommending a non accredited center when there are two good centers an hour and a half from Mayo. </end quote></div>
Me too. The fact that a clinic dosn't bother to get certified by the CFF would seem odd to me. It'd be interesting to find out why.
I'm guessing this center has a docotr who knows something about CF, with a team instead of an actual clinic? I know of a hospital with that arrangement, but it's very far away from a CF center. Otherwise they should have something on the website.
I don't see why they would have a CF center and not advertise. I know my hospital plays it for all it's worth- and they get a fair ammount of donations from it.

I think atypical CF is CF that dosn't present like it's out of a textbook.
 
A

AnnaH

New member
<div class="FTQUOTE"><begin quote>IMHO, I think it's a bit irresponsible to be recommending a non accredited center when there are two good centers an hour and a half from Mayo. </end quote></div>
Me too. The fact that a clinic dosn't bother to get certified by the CFF would seem odd to me. It'd be interesting to find out why.
I'm guessing this center has a docotr who knows something about CF, with a team instead of an actual clinic? I know of a hospital with that arrangement, but it's very far away from a CF center. Otherwise they should have something on the website.
I don't see why they would have a CF center and not advertise. I know my hospital plays it for all it's worth- and they get a fair ammount of donations from it.

I think atypical CF is CF that dosn't present like it's out of a textbook.
 
A

AnnaH

New member
<div class="FTQUOTE"><begin quote>IMHO, I think it's a bit irresponsible to be recommending a non accredited center when there are two good centers an hour and a half from Mayo. </end quote>
Me too. The fact that a clinic dosn't bother to get certified by the CFF would seem odd to me. It'd be interesting to find out why.
I'm guessing this center has a docotr who knows something about CF, with a team instead of an actual clinic? I know of a hospital with that arrangement, but it's very far away from a CF center. Otherwise they should have something on the website.
I don't see why they would have a CF center and not advertise. I know my hospital plays it for all it's worth- and they get a fair ammount of donations from it.

I think atypical CF is CF that dosn't present like it's out of a textbook.
 
A

AnnaH

New member
<div class="FTQUOTE"><begin quote>IMHO, I think it's a bit irresponsible to be recommending a non accredited center when there are two good centers an hour and a half from Mayo. </end quote>
Me too. The fact that a clinic dosn't bother to get certified by the CFF would seem odd to me. It'd be interesting to find out why.
I'm guessing this center has a docotr who knows something about CF, with a team instead of an actual clinic? I know of a hospital with that arrangement, but it's very far away from a CF center. Otherwise they should have something on the website.
I don't see why they would have a CF center and not advertise. I know my hospital plays it for all it's worth- and they get a fair ammount of donations from it.

I think atypical CF is CF that dosn't present like it's out of a textbook.
 
I

idajune

New member
Hold your horses!!!

I can tell you there is CF care at the Rochester MN Mayo site. I have gone there since I was born in 1977. We are not however you say 'accredited' because our numbers of those who attend Mayo with CF are not large enough to be considered accredited, but I can guarantee you that they know what they are doing. There is communication between them and CF centers, the CF nurse was in Anneheim at the CF conference and has sent out info to us from stuff learned there. There is Pediatric CF docs, adult pulmonary CF docs, as well as a great focus of docs on infectious diseases. Don't knock the Mayo center if you know nothing about it, there are I believe about 70 of us here (numbers have grown a lot in the last 10-15 years) and many have come here from the U, there are some different philosophies. I have been kicking for 30 years under their care. There is more to being accredited then to just filing paperwork. I guarantee you that I am not the only one, but I will stand up and say that they do a damn good job!!
 
I

idajune

New member
Hold your horses!!!

I can tell you there is CF care at the Rochester MN Mayo site. I have gone there since I was born in 1977. We are not however you say 'accredited' because our numbers of those who attend Mayo with CF are not large enough to be considered accredited, but I can guarantee you that they know what they are doing. There is communication between them and CF centers, the CF nurse was in Anneheim at the CF conference and has sent out info to us from stuff learned there. There is Pediatric CF docs, adult pulmonary CF docs, as well as a great focus of docs on infectious diseases. Don't knock the Mayo center if you know nothing about it, there are I believe about 70 of us here (numbers have grown a lot in the last 10-15 years) and many have come here from the U, there are some different philosophies. I have been kicking for 30 years under their care. There is more to being accredited then to just filing paperwork. I guarantee you that I am not the only one, but I will stand up and say that they do a damn good job!!
 
I

idajune

New member
Hold your horses!!!

I can tell you there is CF care at the Rochester MN Mayo site. I have gone there since I was born in 1977. We are not however you say 'accredited' because our numbers of those who attend Mayo with CF are not large enough to be considered accredited, but I can guarantee you that they know what they are doing. There is communication between them and CF centers, the CF nurse was in Anneheim at the CF conference and has sent out info to us from stuff learned there. There is Pediatric CF docs, adult pulmonary CF docs, as well as a great focus of docs on infectious diseases. Don't knock the Mayo center if you know nothing about it, there are I believe about 70 of us here (numbers have grown a lot in the last 10-15 years) and many have come here from the U, there are some different philosophies. I have been kicking for 30 years under their care. There is more to being accredited then to just filing paperwork. I guarantee you that I am not the only one, but I will stand up and say that they do a damn good job!!
 
I

idajune

New member
Hold your horses!!!

I can tell you there is CF care at the Rochester MN Mayo site. I have gone there since I was born in 1977. We are not however you say 'accredited' because our numbers of those who attend Mayo with CF are not large enough to be considered accredited, but I can guarantee you that they know what they are doing. There is communication between them and CF centers, the CF nurse was in Anneheim at the CF conference and has sent out info to us from stuff learned there. There is Pediatric CF docs, adult pulmonary CF docs, as well as a great focus of docs on infectious diseases. Don't knock the Mayo center if you know nothing about it, there are I believe about 70 of us here (numbers have grown a lot in the last 10-15 years) and many have come here from the U, there are some different philosophies. I have been kicking for 30 years under their care. There is more to being accredited then to just filing paperwork. I guarantee you that I am not the only one, but I will stand up and say that they do a damn good job!!
 
I

idajune

New member
Hold your horses!!!

I can tell you there is CF care at the Rochester MN Mayo site. I have gone there since I was born in 1977. We are not however you say 'accredited' because our numbers of those who attend Mayo with CF are not large enough to be considered accredited, but I can guarantee you that they know what they are doing. There is communication between them and CF centers, the CF nurse was in Anneheim at the CF conference and has sent out info to us from stuff learned there. There is Pediatric CF docs, adult pulmonary CF docs, as well as a great focus of docs on infectious diseases. Don't knock the Mayo center if you know nothing about it, there are I believe about 70 of us here (numbers have grown a lot in the last 10-15 years) and many have come here from the U, there are some different philosophies. I have been kicking for 30 years under their care. There is more to being accredited then to just filing paperwork. I guarantee you that I am not the only one, but I will stand up and say that they do a damn good job!!
 
R

Ratatosk

Administrator
Staff member
I just found it odd that there is absolutely no information on their website about it. That's all. Even before our CF clinic became accreditted last year, they still had a link on the hospital website, clinic times, treatment philosophy.

As far as the orginal poster, I know she posted previously as cysticfibrosisgirl -- apparently has tried several clinics in the twin cities and has gotten different diagnoses, the run around, etc.
 
R

Ratatosk

Administrator
Staff member
I just found it odd that there is absolutely no information on their website about it. That's all. Even before our CF clinic became accreditted last year, they still had a link on the hospital website, clinic times, treatment philosophy.

As far as the orginal poster, I know she posted previously as cysticfibrosisgirl -- apparently has tried several clinics in the twin cities and has gotten different diagnoses, the run around, etc.
 
R

Ratatosk

Administrator
Staff member
I just found it odd that there is absolutely no information on their website about it. That's all. Even before our CF clinic became accreditted last year, they still had a link on the hospital website, clinic times, treatment philosophy.

As far as the orginal poster, I know she posted previously as cysticfibrosisgirl -- apparently has tried several clinics in the twin cities and has gotten different diagnoses, the run around, etc.
 
R

Ratatosk

Administrator
Staff member
I just found it odd that there is absolutely no information on their website about it. That's all. Even before our CF clinic became accreditted last year, they still had a link on the hospital website, clinic times, treatment philosophy.

As far as the orginal poster, I know she posted previously as cysticfibrosisgirl -- apparently has tried several clinics in the twin cities and has gotten different diagnoses, the run around, etc.
 
R

Ratatosk

Administrator
Staff member
I just found it odd that there is absolutely no information on their website about it. That's all. Even before our CF clinic became accreditted last year, they still had a link on the hospital website, clinic times, treatment philosophy.

As far as the orginal poster, I know she posted previously as cysticfibrosisgirl -- apparently has tried several clinics in the twin cities and has gotten different diagnoses, the run around, etc.
 
L

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>idajune</b></i>

Hold your horses!!!

I can tell you there is CF care at the Rochester MN Mayo site. </end quote></div>

So, there is CF care available there, but not an "actual" CF Clinic? If so, that would explain why no one can find reference to an actual CF Clinic associated with Mayo.

Glad you're getting good care there, I wasn't questioning that, just curious why I couldn't even find a CF Clinic at Mayo.
 
L

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>idajune</b></i>

Hold your horses!!!

I can tell you there is CF care at the Rochester MN Mayo site. </end quote></div>

So, there is CF care available there, but not an "actual" CF Clinic? If so, that would explain why no one can find reference to an actual CF Clinic associated with Mayo.

Glad you're getting good care there, I wasn't questioning that, just curious why I couldn't even find a CF Clinic at Mayo.
 
L

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>idajune</b></i>

Hold your horses!!!

I can tell you there is CF care at the Rochester MN Mayo site. </end quote></div>

So, there is CF care available there, but not an "actual" CF Clinic? If so, that would explain why no one can find reference to an actual CF Clinic associated with Mayo.

Glad you're getting good care there, I wasn't questioning that, just curious why I couldn't even find a CF Clinic at Mayo.
 
L

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>idajune</b></i>

Hold your horses!!!

I can tell you there is CF care at the Rochester MN Mayo site. </end quote>

So, there is CF care available there, but not an "actual" CF Clinic? If so, that would explain why no one can find reference to an actual CF Clinic associated with Mayo.

Glad you're getting good care there, I wasn't questioning that, just curious why I couldn't even find a CF Clinic at Mayo.
 
L

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>idajune</b></i>

Hold your horses!!!

I can tell you there is CF care at the Rochester MN Mayo site. </end quote>

So, there is CF care available there, but not an "actual" CF Clinic? If so, that would explain why no one can find reference to an actual CF Clinic associated with Mayo.

Glad you're getting good care there, I wasn't questioning that, just curious why I couldn't even find a CF Clinic at Mayo.
 
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