Has anyone forgone a cf center for a pulmonologist?

hopeforever5583 · Mar 13, 2009

I have interviewed three centers and am really not impressed by some of their protocols. For instance one center has over 180 patients and when one is admitted three patients could have the same nurse even if one has cepacia ect. The others I have interviewed want to try premixed colliston when someone on this group informed me that the FDA said it was a no no. I dont't want to play doctor with my life but am so getting no where with cf centers. My husband and I are really talking about moving to a center that is really good instead of just settling for mediocore which I feel I am getting here where I am at.
Some questions/

1) Has anyone decided to go with a pulmonologist instead of an accredited cf center?
2) what has beeen your experience with your center care in regards to cross contamination ect..
3) Any one prefer a non teaching hospital to a teaching hospital care where many med students are constantly in your room?
4) Does your doctor ever call you back at your center or is it just his/her nurse?

I miss so much the care I received at my children's center but was kicked out at 20. told by one center with me being 30 I am getting old with this disease.. Ughhh please tell me a center that is amazing with it's care!

Confused and feeling alone with my care!

hopeforever5583 · Mar 13, 2009

I have interviewed three centers and am really not impressed by some of their protocols. For instance one center has over 180 patients and when one is admitted three patients could have the same nurse even if one has cepacia ect. The others I have interviewed want to try premixed colliston when someone on this group informed me that the FDA said it was a no no. I dont't want to play doctor with my life but am so getting no where with cf centers. My husband and I are really talking about moving to a center that is really good instead of just settling for mediocore which I feel I am getting here where I am at.
Some questions/

1) Has anyone decided to go with a pulmonologist instead of an accredited cf center?
2) what has beeen your experience with your center care in regards to cross contamination ect..
3) Any one prefer a non teaching hospital to a teaching hospital care where many med students are constantly in your room?
4) Does your doctor ever call you back at your center or is it just his/her nurse?

I miss so much the care I received at my children's center but was kicked out at 20. told by one center with me being 30 I am getting old with this disease.. Ughhh please tell me a center that is amazing with it's care!

Confused and feeling alone with my care!

hopeforever5583 · Mar 13, 2009

I have interviewed three centers and am really not impressed by some of their protocols. For instance one center has over 180 patients and when one is admitted three patients could have the same nurse even if one has cepacia ect. The others I have interviewed want to try premixed colliston when someone on this group informed me that the FDA said it was a no no. I dont't want to play doctor with my life but am so getting no where with cf centers. My husband and I are really talking about moving to a center that is really good instead of just settling for mediocore which I feel I am getting here where I am at.
Some questions/

1) Has anyone decided to go with a pulmonologist instead of an accredited cf center?
2) what has beeen your experience with your center care in regards to cross contamination ect..
3) Any one prefer a non teaching hospital to a teaching hospital care where many med students are constantly in your room?
4) Does your doctor ever call you back at your center or is it just his/her nurse?

I miss so much the care I received at my children's center but was kicked out at 20. told by one center with me being 30 I am getting old with this disease.. Ughhh please tell me a center that is amazing with it's care!

Confused and feeling alone with my care!

hopeforever5583 · Mar 13, 2009

I have interviewed three centers and am really not impressed by some of their protocols. For instance one center has over 180 patients and when one is admitted three patients could have the same nurse even if one has cepacia ect. The others I have interviewed want to try premixed colliston when someone on this group informed me that the FDA said it was a no no. I dont't want to play doctor with my life but am so getting no where with cf centers. My husband and I are really talking about moving to a center that is really good instead of just settling for mediocore which I feel I am getting here where I am at.
Some questions/

1) Has anyone decided to go with a pulmonologist instead of an accredited cf center?
2) what has beeen your experience with your center care in regards to cross contamination ect..
3) Any one prefer a non teaching hospital to a teaching hospital care where many med students are constantly in your room?
4) Does your doctor ever call you back at your center or is it just his/her nurse?

I miss so much the care I received at my children's center but was kicked out at 20. told by one center with me being 30 I am getting old with this disease.. Ughhh please tell me a center that is amazing with it's care!

Confused and feeling alone with my care!

hopeforever5583 · Mar 13, 2009

I have interviewed three centers and am really not impressed by some of their protocols. For instance one center has over 180 patients and when one is admitted three patients could have the same nurse even if one has cepacia ect. The others I have interviewed want to try premixed colliston when someone on this group informed me that the FDA said it was a no no. I dont't want to play doctor with my life but am so getting no where with cf centers. My husband and I are really talking about moving to a center that is really good instead of just settling for mediocore which I feel I am getting here where I am at.
 Some questions/
 
 1) Has anyone decided to go with a pulmonologist instead of an accredited cf center?
 2) what has beeen your experience with your center care in regards to cross contamination ect..
 3) Any one prefer a non teaching hospital to a teaching hospital care where many med students are constantly in your room?
 4) Does your doctor ever call you back at your center or is it just his/her nurse?
 
 I miss so much the care I received at my children's center but was kicked out at 20. told by one center with me being 30 I am getting old with this disease.. Ughhh please tell me a center that is amazing with it's care!
 
 Confused and feeling alone with my care!

JennifersHope · Mar 13, 2009

I just recently switched to MUSC in Charleston.. They are so great, they do not allow other nurses that are taking care of Cepecia patients to take care of other CF patients, nor do they allow the RTs to either.

I don't recommend going to a non CF accredited place, I did that for a while, while I got good care it was nothing like at a specifically trained center.

Obviously MUSC is a teaching hospital but while I was there no students of any kind came in my room. Only the resident once when I had a medical emergency.. Otherwise everyone waited outside my door while the doctor came in.. I much prefer it that way, though I didn't request it, I think they do that for all CFers..

I strongly feel that you need to be somewhere where the ppl know more about CF then you do.. It is so much better to be taken care of and trained rather then trying to train other ppl in your care...

If you live anywhere near SC I recommend MUSC.... or any center where you are going to be safe.. I drive two hours to get to clinic and honestly I would drive further because they are that good.

JennifersHope · Mar 13, 2009

I just recently switched to MUSC in Charleston.. They are so great, they do not allow other nurses that are taking care of Cepecia patients to take care of other CF patients, nor do they allow the RTs to either.

I don't recommend going to a non CF accredited place, I did that for a while, while I got good care it was nothing like at a specifically trained center.

Obviously MUSC is a teaching hospital but while I was there no students of any kind came in my room. Only the resident once when I had a medical emergency.. Otherwise everyone waited outside my door while the doctor came in.. I much prefer it that way, though I didn't request it, I think they do that for all CFers..

I strongly feel that you need to be somewhere where the ppl know more about CF then you do.. It is so much better to be taken care of and trained rather then trying to train other ppl in your care...

If you live anywhere near SC I recommend MUSC.... or any center where you are going to be safe.. I drive two hours to get to clinic and honestly I would drive further because they are that good.

JennifersHope · Mar 13, 2009

I just recently switched to MUSC in Charleston.. They are so great, they do not allow other nurses that are taking care of Cepecia patients to take care of other CF patients, nor do they allow the RTs to either.

I don't recommend going to a non CF accredited place, I did that for a while, while I got good care it was nothing like at a specifically trained center.

Obviously MUSC is a teaching hospital but while I was there no students of any kind came in my room. Only the resident once when I had a medical emergency.. Otherwise everyone waited outside my door while the doctor came in.. I much prefer it that way, though I didn't request it, I think they do that for all CFers..

I strongly feel that you need to be somewhere where the ppl know more about CF then you do.. It is so much better to be taken care of and trained rather then trying to train other ppl in your care...

If you live anywhere near SC I recommend MUSC.... or any center where you are going to be safe.. I drive two hours to get to clinic and honestly I would drive further because they are that good.

JennifersHope · Mar 13, 2009

I just recently switched to MUSC in Charleston.. They are so great, they do not allow other nurses that are taking care of Cepecia patients to take care of other CF patients, nor do they allow the RTs to either.

I don't recommend going to a non CF accredited place, I did that for a while, while I got good care it was nothing like at a specifically trained center.

Obviously MUSC is a teaching hospital but while I was there no students of any kind came in my room. Only the resident once when I had a medical emergency.. Otherwise everyone waited outside my door while the doctor came in.. I much prefer it that way, though I didn't request it, I think they do that for all CFers..

I strongly feel that you need to be somewhere where the ppl know more about CF then you do.. It is so much better to be taken care of and trained rather then trying to train other ppl in your care...

If you live anywhere near SC I recommend MUSC.... or any center where you are going to be safe.. I drive two hours to get to clinic and honestly I would drive further because they are that good.

JennifersHope · Mar 13, 2009

I just recently switched to MUSC in Charleston.. They are so great, they do not allow other nurses that are taking care of Cepecia patients to take care of other CF patients, nor do they allow the RTs to either.
 
 I don't recommend going to a non CF accredited place, I did that for a while, while I got good care it was nothing like at a specifically trained center.
 
 Obviously MUSC is a teaching hospital but while I was there no students of any kind came in my room. Only the resident once when I had a medical emergency.. Otherwise everyone waited outside my door while the doctor came in.. I much prefer it that way, though I didn't request it, I think they do that for all CFers..
 
 I strongly feel that you need to be somewhere where the ppl know more about CF then you do.. It is so much better to be taken care of and trained rather then trying to train other ppl in your care...
 
 If you live anywhere near SC I recommend MUSC.... or any center where you are going to be safe.. I drive two hours to get to clinic and honestly I would drive further because they are that good.

JenDiS · Mar 13, 2009

I swtiched from Yale New Haven Hospital's CF clinic to follow my pulmonologist when she left there for obvious reasons.

They are full of crap at yale.

Being with my doctor has been great so far. She is a pediatric pulmonologist but she will never let me go and I do not wish to switch at all cuz if I do I lose my care that im getting from her such as my shots to control my asthma and the hospital I go to instead of yale.

I would go to a hospital that is not apart of a university just because I personally do NOT like people learning on me. I dont care if they "need the experience" they can do it on someone else. When my health is at stake they can do it else where.

Too many times ive been poked n proded by med students that gave false information to my doctor. Never will I let them come in my room to "examine me" or anything because thats just not happening lol

Good luck finding a center. It sounds like from the amount of CF centers that you have checked out that it wouldnt hurt to go to a pulmonologist and see what they can do for you. If you have any other underlying pulmonary illness a pulmonologist can take care of that as well as your CF.

That is what mine is doing for me with my asthma <img src="i/expressions/face-icon-small-smile.gif" border="0">

JenDiS · Mar 13, 2009

I swtiched from Yale New Haven Hospital's CF clinic to follow my pulmonologist when she left there for obvious reasons.

They are full of crap at yale.

Being with my doctor has been great so far. She is a pediatric pulmonologist but she will never let me go and I do not wish to switch at all cuz if I do I lose my care that im getting from her such as my shots to control my asthma and the hospital I go to instead of yale.

I would go to a hospital that is not apart of a university just because I personally do NOT like people learning on me. I dont care if they "need the experience" they can do it on someone else. When my health is at stake they can do it else where.

Too many times ive been poked n proded by med students that gave false information to my doctor. Never will I let them come in my room to "examine me" or anything because thats just not happening lol

Good luck finding a center. It sounds like from the amount of CF centers that you have checked out that it wouldnt hurt to go to a pulmonologist and see what they can do for you. If you have any other underlying pulmonary illness a pulmonologist can take care of that as well as your CF.

That is what mine is doing for me with my asthma <img src="i/expressions/face-icon-small-smile.gif" border="0">

JenDiS · Mar 13, 2009

I swtiched from Yale New Haven Hospital's CF clinic to follow my pulmonologist when she left there for obvious reasons.

They are full of crap at yale.

Being with my doctor has been great so far. She is a pediatric pulmonologist but she will never let me go and I do not wish to switch at all cuz if I do I lose my care that im getting from her such as my shots to control my asthma and the hospital I go to instead of yale.

I would go to a hospital that is not apart of a university just because I personally do NOT like people learning on me. I dont care if they "need the experience" they can do it on someone else. When my health is at stake they can do it else where.

Too many times ive been poked n proded by med students that gave false information to my doctor. Never will I let them come in my room to "examine me" or anything because thats just not happening lol

Good luck finding a center. It sounds like from the amount of CF centers that you have checked out that it wouldnt hurt to go to a pulmonologist and see what they can do for you. If you have any other underlying pulmonary illness a pulmonologist can take care of that as well as your CF.

That is what mine is doing for me with my asthma <img src="i/expressions/face-icon-small-smile.gif" border="0">

JenDiS · Mar 13, 2009

I swtiched from Yale New Haven Hospital's CF clinic to follow my pulmonologist when she left there for obvious reasons.

They are full of crap at yale.

Being with my doctor has been great so far. She is a pediatric pulmonologist but she will never let me go and I do not wish to switch at all cuz if I do I lose my care that im getting from her such as my shots to control my asthma and the hospital I go to instead of yale.

I would go to a hospital that is not apart of a university just because I personally do NOT like people learning on me. I dont care if they "need the experience" they can do it on someone else. When my health is at stake they can do it else where.

Too many times ive been poked n proded by med students that gave false information to my doctor. Never will I let them come in my room to "examine me" or anything because thats just not happening lol

Good luck finding a center. It sounds like from the amount of CF centers that you have checked out that it wouldnt hurt to go to a pulmonologist and see what they can do for you. If you have any other underlying pulmonary illness a pulmonologist can take care of that as well as your CF.

That is what mine is doing for me with my asthma <img src="i/expressions/face-icon-small-smile.gif" border="0">

JenDiS · Mar 13, 2009

I swtiched from Yale New Haven Hospital's CF clinic to follow my pulmonologist when she left there for obvious reasons.
 
 They are full of crap at yale.
 
 Being with my doctor has been great so far. She is a pediatric pulmonologist but she will never let me go and I do not wish to switch at all cuz if I do I lose my care that im getting from her such as my shots to control my asthma and the hospital I go to instead of yale.
 
 I would go to a hospital that is not apart of a university just because I personally do NOT like people learning on me. I dont care if they "need the experience" they can do it on someone else. When my health is at stake they can do it else where.
 
 Too many times ive been poked n proded by med students that gave false information to my doctor. Never will I let them come in my room to "examine me" or anything because thats just not happening lol
 
 Good luck finding a center. It sounds like from the amount of CF centers that you have checked out that it wouldnt hurt to go to a pulmonologist and see what they can do for you. If you have any other underlying pulmonary illness a pulmonologist can take care of that as well as your CF.
 
 That is what mine is doing for me with my asthma <img src="i/expressions/face-icon-small-smile.gif" border="0">

dbtoo · Mar 13, 2009