A Good CF Center/ Doctor

[jbrandonAW]

I got to LSU in shreveport La. I see Dr. Kim Jones. She is the BEST! She is always up on new treatments. She is VERY open minded to new "out there" treatments. (for examples LOVED that I tried supplements and decided to try me on cromolyn sodium even though it doesn't work on many people). She is very much about the patient as an individual. Honestly I never wanna leave her clinic EVER.
<br />
<br />She has a great PA whom rocks. However she just hired on a new doctor. She is a @%@#$. I refuse to see her. She is very smart though. But throws around her yale education too much and doesn't care what the patient has to say b/c she knows all. BUT you can refuse to see her like alot of us have.

 

[mike0122]

I have two good doctors. One is an internal medicine doc and he has his areas that he is very good with. However, when it comes to understanding having to work around life events or work, he is not understanding. He believes you can drop whatever you are doing and immediately put CF at the top of the list and sacrifice everything else including work. However, it does not work like this as everyone knows in the real world. He just seems to have little empathy.

However, we recently started seeing an infectious disease doctor at our clinic. He on the other hand will look at your health and work with your schedule to figure out the best treatment. For example, I'm going to be doing home IV and he is aware of my work and my privacy concerns. So he worked very closely with me to figure out a plan and execution to help me get what I need and to keep it from interfering with work as well as providing a way to help me keep my CF private.

I prefer to not let co-workers know about that part of my life. This is what the privacy thing is about and he is very understanding of this.

I wish the internal medicine doc would work with me like this.

 

[mike0122]

I have two good doctors. One is an internal medicine doc and he has his areas that he is very good with. However, when it comes to understanding having to work around life events or work, he is not understanding. He believes you can drop whatever you are doing and immediately put CF at the top of the list and sacrifice everything else including work. However, it does not work like this as everyone knows in the real world. He just seems to have little empathy.

However, we recently started seeing an infectious disease doctor at our clinic. He on the other hand will look at your health and work with your schedule to figure out the best treatment. For example, I'm going to be doing home IV and he is aware of my work and my privacy concerns. So he worked very closely with me to figure out a plan and execution to help me get what I need and to keep it from interfering with work as well as providing a way to help me keep my CF private.

I prefer to not let co-workers know about that part of my life. This is what the privacy thing is about and he is very understanding of this.

I wish the internal medicine doc would work with me like this.

 

[mike0122]

I have two good doctors. One is an internal medicine doc and he has his areas that he is very good with. However, when it comes to understanding having to work around life events or work, he is not understanding. He believes you can drop whatever you are doing and immediately put CF at the top of the list and sacrifice everything else including work. However, it does not work like this as everyone knows in the real world. He just seems to have little empathy.
<br />
<br />However, we recently started seeing an infectious disease doctor at our clinic. He on the other hand will look at your health and work with your schedule to figure out the best treatment. For example, I'm going to be doing home IV and he is aware of my work and my privacy concerns. So he worked very closely with me to figure out a plan and execution to help me get what I need and to keep it from interfering with work as well as providing a way to help me keep my CF private.
<br />
<br />I prefer to not let co-workers know about that part of my life. This is what the privacy thing is about and he is very understanding of this.
<br />
<br />I wish the internal medicine doc would work with me like this.

 

[mamaScarlett]

not sure entirely what your situation is, but to give you another perspective, regarding exercise and hospital stays:i culture b. cep and that means contact isolation. someone with b.cep should not be walking the halls or sharing in gym rooms with other patients. that is not just a protection for others, but for myself as well.
not going to mince it here, if a hospital isn't adhering to cross contamination guidelines, its in the dark ages.
however, my center is strict about exercise. they have a trainer come into the room to do exercises if we wish it, we get our own exercise bike, mat, and dvd player with workout dvds.
just another perspective. wish you the best in finding a center that works for you.

 

[mamaScarlett]

not sure entirely what your situation is, but to give you another perspective, regarding exercise and hospital stays:i culture b. cep and that means contact isolation. someone with b.cep should not be walking the halls or sharing in gym rooms with other patients. that is not just a protection for others, but for myself as well.
not going to mince it here, if a hospital isn't adhering to cross contamination guidelines, its in the dark ages.
however, my center is strict about exercise. they have a trainer come into the room to do exercises if we wish it, we get our own exercise bike, mat, and dvd player with workout dvds.
just another perspective. wish you the best in finding a center that works for you.

 

[mamaScarlett]

not sure entirely what your situation is, but to give you another perspective, regarding exercise and hospital stays:i culture b. cep and that means contact isolation. someone with b.cep should not be walking the halls or sharing in gym rooms with other patients. that is not just a protection for others, but for myself as well.
<br />not going to mince it here, if a hospital isn't adhering to cross contamination guidelines, its in the dark ages.
<br />however, my center is strict about exercise. they have a trainer come into the room to do exercises if we wish it, we get our own exercise bike, mat, and dvd player with workout dvds.
<br />just another perspective. wish you the best in finding a center that works for you.

 

[patrish22]

My adult kids have been a part of the clinic at Morristown Memorial Hospital in Morristown NJ for a long time. Dr. S. Fiel, and his team are great! They encourage exercise, good diet, chest pt, and nebs and living life to the fullest. Wonderful supportive group who will LISTEN to you. Good luck and hope you find a place that works well for you. Respiratory Therapy team is outstanding. Never had a problem with them.

 

[patrish22]

My adult kids have been a part of the clinic at Morristown Memorial Hospital in Morristown NJ for a long time. Dr. S. Fiel, and his team are great! They encourage exercise, good diet, chest pt, and nebs and living life to the fullest. Wonderful supportive group who will LISTEN to you. Good luck and hope you find a place that works well for you. Respiratory Therapy team is outstanding. Never had a problem with them.

 

[patrish22]

My adult kids have been a part of the clinic at Morristown Memorial Hospital in Morristown NJ for a long time. Dr. S. Fiel, and his team are great! They encourage exercise, good diet, chest pt, and nebs and living life to the fullest. Wonderful supportive group who will LISTEN to you. Good luck and hope you find a place that works well for you. Respiratory Therapy team is outstanding. Never had a problem with them.

 

[CFkitty]

There may be several reasons why you aren't allowed to walk up and down the stairs.

For example, you might culture MRSA or B. Cepacia, or something else that has a protocol for infection control.

You also might be a fall risk. If you are really sick, on O2, or on certain types of medications, it might not be a good idea to go walking up and down stairs by yourself.

Just because your doctor doesn't think it's a good idea for you to be walking on stairs w<i>hile you are inpatient for IVs at one point in time</i> does not mean that he/she and clinic are against exercise.

 

[CFkitty]

There may be several reasons why you aren't allowed to walk up and down the stairs.

For example, you might culture MRSA or B. Cepacia, or something else that has a protocol for infection control.

You also might be a fall risk. If you are really sick, on O2, or on certain types of medications, it might not be a good idea to go walking up and down stairs by yourself.

Just because your doctor doesn't think it's a good idea for you to be walking on stairs w<i>hile you are inpatient for IVs at one point in time</i> does not mean that he/she and clinic are against exercise.

 

[CFkitty]

There may be several reasons why you aren't allowed to walk up and down the stairs.
<br />
<br />For example, you might culture MRSA or B. Cepacia, or something else that has a protocol for infection control.
<br />
<br />You also might be a fall risk. If you are really sick, on O2, or on certain types of medications, it might not be a good idea to go walking up and down stairs by yourself.
<br />
<br />Just because your doctor doesn't think it's a good idea for you to be walking on stairs w<i>hile you are inpatient for IVs at one point in time</i> does not mean that he/she and clinic are against exercise.

 

[Cerulean]

I'm suprised you are not satisfied with UCSF. They are a teaching hospital and should be up on all the research and all. I go to Stanford. I am quite satisfied. The nurse practitioner and the endocrinologist are particularly friendly and knowledgeable. My Dr. is involved in CF Reasearch. They do talk of exercise, but it's not pushed.

 

[Cerulean]

I'm suprised you are not satisfied with UCSF. They are a teaching hospital and should be up on all the research and all. I go to Stanford. I am quite satisfied. The nurse practitioner and the endocrinologist are particularly friendly and knowledgeable. My Dr. is involved in CF Reasearch. They do talk of exercise, but it's not pushed.

 

[Cerulean]

I'm suprised you are not satisfied with UCSF. They are a teaching hospital and should be up on all the research and all. I go to Stanford. I am quite satisfied. The nurse practitioner and the endocrinologist are particularly friendly and knowledgeable. My Dr. is involved in CF Reasearch. They do talk of exercise, but it's not pushed.

 

[alluneedislove]

Mayo Clinic Rochester Minnesota!!! Wonderful place to go I see Dr. Wylam he is wonderful and he has a great Cf nurse her name is Vicki Dean.

 

[alluneedislove]

Mayo Clinic Rochester Minnesota!!! Wonderful place to go I see Dr. Wylam he is wonderful and he has a great Cf nurse her name is Vicki Dean.

 

[alluneedislove]

Mayo Clinic Rochester Minnesota!!! Wonderful place to go I see Dr. Wylam he is wonderful and he has a great Cf nurse her name is Vicki Dean.