A Good CF Center/ Doctor

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laplayalove

New member
I am currently a patient at UCSF. I am not very comfortable with the atitude of the head CF doctor. I wish there was a choice when it comes to choosing a good CF doctor. A good doctor is one who know all the latest treatment and all the numbers and can offer their knowlaege with you.
A great doctor is one who does not pass judgment. One who listens and conciders your life style when making a treatment plan and includes you in the planning. One who encourages exercise! And one who does not think the only way to live heathlier and longer is through transplant.

Please let me know if you have a great doctor and where they are. I will move anywhere if there is a great doctor!

Looking for a hospital that will offer exercise as part of treatment!
 
L

laplayalove

New member
I am currently a patient at UCSF. I am not very comfortable with the atitude of the head CF doctor. I wish there was a choice when it comes to choosing a good CF doctor. A good doctor is one who know all the latest treatment and all the numbers and can offer their knowlaege with you.
A great doctor is one who does not pass judgment. One who listens and conciders your life style when making a treatment plan and includes you in the planning. One who encourages exercise! And one who does not think the only way to live heathlier and longer is through transplant.

Please let me know if you have a great doctor and where they are. I will move anywhere if there is a great doctor!

Looking for a hospital that will offer exercise as part of treatment!
 
L

laplayalove

New member
I am currently a patient at UCSF. I am not very comfortable with the atitude of the head CF doctor. I wish there was a choice when it comes to choosing a good CF doctor. A good doctor is one who know all the latest treatment and all the numbers and can offer their knowlaege with you.
<br />A great doctor is one who does not pass judgment. One who listens and conciders your life style when making a treatment plan and includes you in the planning. One who encourages exercise! And one who does not think the only way to live heathlier and longer is through transplant.
<br />
<br />Please let me know if you have a great doctor and where they are. I will move anywhere if there is a great doctor!
<br />
<br />Looking for a hospital that will offer exercise as part of treatment!
 
L

laplayalove

New member
Thank you all for your advice...
After reading about all your experience in the hospital and that exercise is promoted with PT as part of your treatment plan. I just can't believe how it is look down apun here at UCSF (Mt.Zion). I just can't believe one of the best hospitals can't offer that to the patients.
I had requested to be hep lock so I could walk on the stairs They would not take me off....

I had to fight for two days to get off my IV to the point they called sercurity to keep watch on me. And my head doctor says. She thinks it's a good idea that sercurity watches me. I am so concerned what happens to those who will not stand up for theirselves.

Again thank you for all your advice I will start looking into other clinics
 
L

laplayalove

New member
Thank you all for your advice...
After reading about all your experience in the hospital and that exercise is promoted with PT as part of your treatment plan. I just can't believe how it is look down apun here at UCSF (Mt.Zion). I just can't believe one of the best hospitals can't offer that to the patients.
I had requested to be hep lock so I could walk on the stairs They would not take me off....

I had to fight for two days to get off my IV to the point they called sercurity to keep watch on me. And my head doctor says. She thinks it's a good idea that sercurity watches me. I am so concerned what happens to those who will not stand up for theirselves.

Again thank you for all your advice I will start looking into other clinics
 
L

laplayalove

New member
Thank you all for your advice...
<br />After reading about all your experience in the hospital and that exercise is promoted with PT as part of your treatment plan. I just can't believe how it is look down apun here at UCSF (Mt.Zion). I just can't believe one of the best hospitals can't offer that to the patients.
<br />I had requested to be hep lock so I could walk on the stairs They would not take me off....
<br />
<br />I had to fight for two days to get off my IV to the point they called sercurity to keep watch on me. And my head doctor says. She thinks it's a good idea that sercurity watches me. I am so concerned what happens to those who will not stand up for theirselves.
<br />
<br />Again thank you for all your advice I will start looking into other clinics
 
L

Lance2020x

New member
Wow.... that's insane.

I go to the Vanderbilt Clinic in Nashville. My doctors, their whole goal is to KEEP me from having to get a transplant. They focus on what we need, and they let me ultimately take the reigns for my health. When I'm sick my doctor will say "Okay, what are YOU thinking? Did you pack a toothbrush when you came today?" and I am able to say "I think oral antibiotics will take care of it" or if I can't decide she'll say "Okay, well, judging from your chart here, here's what I think". It's very much focused on living with and beyond CF. They even sneak me enzyme "samples" if my insurance is being a pain.
 
L

Lance2020x

New member
Wow.... that's insane.

I go to the Vanderbilt Clinic in Nashville. My doctors, their whole goal is to KEEP me from having to get a transplant. They focus on what we need, and they let me ultimately take the reigns for my health. When I'm sick my doctor will say "Okay, what are YOU thinking? Did you pack a toothbrush when you came today?" and I am able to say "I think oral antibiotics will take care of it" or if I can't decide she'll say "Okay, well, judging from your chart here, here's what I think". It's very much focused on living with and beyond CF. They even sneak me enzyme "samples" if my insurance is being a pain.
 
L

Lance2020x

New member
Wow.... that's insane.
<br />
<br />I go to the Vanderbilt Clinic in Nashville. My doctors, their whole goal is to KEEP me from having to get a transplant. They focus on what we need, and they let me ultimately take the reigns for my health. When I'm sick my doctor will say "Okay, what are YOU thinking? Did you pack a toothbrush when you came today?" and I am able to say "I think oral antibiotics will take care of it" or if I can't decide she'll say "Okay, well, judging from your chart here, here's what I think". It's very much focused on living with and beyond CF. They even sneak me enzyme "samples" if my insurance is being a pain.
 
T

theLostMiler

New member
Yea that's insane. They make me get out of bed, they want me walking the halls if nothing else on the weekends. I also get samples haha does sound like it's time to switch.
 
T

theLostMiler

New member
Yea that's insane. They make me get out of bed, they want me walking the halls if nothing else on the weekends. I also get samples haha does sound like it's time to switch.
 
T

theLostMiler

New member
Yea that's insane. They make me get out of bed, they want me walking the halls if nothing else on the weekends. I also get samples haha does sound like it's time to switch.
 
J

jbrandonAW

New member
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.

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.
 
J

jbrandonAW

New member
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.

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.
 
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