How awesome is your doctor?

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Ratatosk

Administrator
Staff member
I'd say 5 for DS doctor. Very aggressive, proactive. Quick response to phone calls. And on the rare occaision that it's on weekends he's personally called back. I am a bit concerned as he's getting up in years, but confident he won't leave us in the lurch.

Local CF clinic I'd have to say 1 or 2 -- NEVER return phone calls. Hardly reactive at all. If there's been an issue with DS' health, the response, if I get one is that he has CF so I should expect issues.
 
R

Ratatosk

Administrator
Staff member
I'd say 5 for DS doctor. Very aggressive, proactive. Quick response to phone calls. And on the rare occaision that it's on weekends he's personally called back. I am a bit concerned as he's getting up in years, but confident he won't leave us in the lurch.

Local CF clinic I'd have to say 1 or 2 -- NEVER return phone calls. Hardly reactive at all. If there's been an issue with DS' health, the response, if I get one is that he has CF so I should expect issues.
 
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saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mamaScarlett</b></i> My dr gets a 4.9. I docked them a bit bc of phone communication issues, and usually thats around prescriptions. It shouldn't take, imo, 3 phone calls to get a script filled. But that would be the fault of the staff, not the docs. But as captain of the office ship-the docs need to step in. There are always delays or miscommunicated messages. I find the delays very irritating. A patients life is hard enough-you shouldn't have to feel like you are nagging, calling someone multiple times bc of prescriptions. Its a small thing they could do, to make our lives just a TINY bit easier. My relationship with my team is really important to me though. They are like extended family. The bottom line is, I trust my doctor. I have my docs cell #, and my nurses. When I've had a baby, or been sick, she'll call in the middle of the night to check on me. She'll text to see how I am, how the kids are even. They'll text me 9pm on a friday just to see how I am and if I need anything. They've bent over backwards to help me with things, from logistics of parenting with Cf, traveling, family issues, etc. My doctor also embraces the whole body philosophy of cf care. She has an accupuncturist on staff, and has had staff come in to offer patients massage. Also, when you live with cf and have 2 children of your own, you really see how a relationship with the cf team is tested and what it can accomplish. My team has been supportive of my childbirth choices, my choice of birthing hospital, doulas, etc..and have gone to GREAT lengths to help me do what I want to do, but be safe. The numbers speak for themselves. When I found my doctor, my pfts were hovering between 55-60. The past decade, they've increased to 70-75 consistently. Bc of the changes she made when I first found her, and the instruction she gave, and the time she took to personally teach me to improve my chest pt technique.</end quote>

This is incredible. I would give anything to have this type of care..... do you mind telling us which clinic you go to? I may need to start flying somewhere! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mamaScarlett</b></i> My dr gets a 4.9. I docked them a bit bc of phone communication issues, and usually thats around prescriptions. It shouldn't take, imo, 3 phone calls to get a script filled. But that would be the fault of the staff, not the docs. But as captain of the office ship-the docs need to step in. There are always delays or miscommunicated messages. I find the delays very irritating. A patients life is hard enough-you shouldn't have to feel like you are nagging, calling someone multiple times bc of prescriptions. Its a small thing they could do, to make our lives just a TINY bit easier. My relationship with my team is really important to me though. They are like extended family. The bottom line is, I trust my doctor. I have my docs cell #, and my nurses. When I've had a baby, or been sick, she'll call in the middle of the night to check on me. She'll text to see how I am, how the kids are even. They'll text me 9pm on a friday just to see how I am and if I need anything. They've bent over backwards to help me with things, from logistics of parenting with Cf, traveling, family issues, etc. My doctor also embraces the whole body philosophy of cf care. She has an accupuncturist on staff, and has had staff come in to offer patients massage. Also, when you live with cf and have 2 children of your own, you really see how a relationship with the cf team is tested and what it can accomplish. My team has been supportive of my childbirth choices, my choice of birthing hospital, doulas, etc..and have gone to GREAT lengths to help me do what I want to do, but be safe. The numbers speak for themselves. When I found my doctor, my pfts were hovering between 55-60. The past decade, they've increased to 70-75 consistently. Bc of the changes she made when I first found her, and the instruction she gave, and the time she took to personally teach me to improve my chest pt technique.</end quote>

This is incredible. I would give anything to have this type of care..... do you mind telling us which clinic you go to? I may need to start flying somewhere! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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MerryMary

New member
5! I love my doctor! He is very kind and understanding. I feel he shares my frustrations and joys concerning the things I am going through. And he'sokay with me trying new and different stuff.
I also love his staff, they are all so nice. Just recently my favorite nurse had to quit working for awhile. (I hope it is temp.) I am so sad!! They are becoming like family. The communication and returning phone calls has gotten much better over the years.
Glad to hear others out there have awesome docs too!
 
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MerryMary

New member
5! I love my doctor! He is very kind and understanding. I feel he shares my frustrations and joys concerning the things I am going through. And he'sokay with me trying new and different stuff.
I also love his staff, they are all so nice. Just recently my favorite nurse had to quit working for awhile. (I hope it is temp.) I am so sad!! They are becoming like family. The communication and returning phone calls has gotten much better over the years.
Glad to hear others out there have awesome docs too!
 
J

JENNYC

New member
My daughters doc gets a 4. When you actually see them, she is treated like a queen. But sometimes getting a call back takes forever, and Abby is one of those that you better act fast because her little problems turn ugly extremely fast and we live 3 hours away so if they want to see her they have to let me know pretty quick. And it does seem like I have to question for things that I shouldn't have to. Like when Kalydeco came out, I immediately asked if he thought if we should get her retested to find her second mutation...his response was he didn't see the point in it!!! What!!! So I pushed to get this done...still hasn't been done by the way...and then went to family education day and now he thinks everyone should get tested that doesn't know and he will be getting that organized. So really sweet people and take care of her when she is ill...but ..... could improve in my opinion.
 
J

JENNYC

New member
My daughters doc gets a 4. When you actually see them, she is treated like a queen. But sometimes getting a call back takes forever, and Abby is one of those that you better act fast because her little problems turn ugly extremely fast and we live 3 hours away so if they want to see her they have to let me know pretty quick. And it does seem like I have to question for things that I shouldn't have to. Like when Kalydeco came out, I immediately asked if he thought if we should get her retested to find her second mutation...his response was he didn't see the point in it!!! What!!! So I pushed to get this done...still hasn't been done by the way...and then went to family education day and now he thinks everyone should get tested that doesn't know and he will be getting that organized. So really sweet people and take care of her when she is ill...but ..... could improve in my opinion.
 
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Laura47

New member
Without a doubt, a 5. My doctor is not only my doctor, but he's my friend - and treats me like one. He doesn't rely on others, so if I need to contact the clinic, I contact him and he takes care of any issues/problems. He respects my knowledge of CF and my own body and never dictates what I should do; rather, we consult about what the options are, the positives and negatives, and how I feel about them. I couldn't ask for a better doctor - ever.
 
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Laura47

New member
Without a doubt, a 5. My doctor is not only my doctor, but he's my friend - and treats me like one. He doesn't rely on others, so if I need to contact the clinic, I contact him and he takes care of any issues/problems. He respects my knowledge of CF and my own body and never dictates what I should do; rather, we consult about what the options are, the positives and negatives, and how I feel about them. I couldn't ask for a better doctor - ever.
 
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curecfnow

New member
My two girls, ages 16 and 8, are seen at Children's Los Angeles and I rate the doctor and team a 5+. They are awesome. The doctor will always answer my email or calls and if she can't, then the nurse does. Our team is like a second family to us. They show they care about every aspect of my girls' lives. Not only health issues, but also what they do in their spare time to have fun and what kinds of things they like. They don't just focus on their CF and I feel that is really important to my girls. My girls like the fact that they are given options when it comes to their CF. I don't know what they are going to do when it comes time to transfer to an adult center. I just hope there will be some good adult center in the L.A. area.
 
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curecfnow

New member
My two girls, ages 16 and 8, are seen at Children's Los Angeles and I rate the doctor and team a 5+. They are awesome. The doctor will always answer my email or calls and if she can't, then the nurse does. Our team is like a second family to us. They show they care about every aspect of my girls' lives. Not only health issues, but also what they do in their spare time to have fun and what kinds of things they like. They don't just focus on their CF and I feel that is really important to my girls. My girls like the fact that they are given options when it comes to their CF. I don't know what they are going to do when it comes time to transfer to an adult center. I just hope there will be some good adult center in the L.A. area.
 
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beleache

New member
I go to Beth Israel in Manhattan , same as Mama Scarlet.. I switched from a center on Long Island, NY to St. Vincent's in Manhattan a few years back after Melissa & Graves talked me into it lol They knew I wasn't happy @ my previous center anymore.
I loved St. Vincent's & the entire team went over to BI after St. Vincent's closed down. I think it takes some time to have that close bond w/ a team & I feel very comfortable there & have faith in my team <img src="i/expressions/face-icon-small-smile.gif" border="0"> Which as we all know is a biggie !
As Mama Scarlet said, the office could be run better, but I think it is getting there. Im going to give them a 4.5
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
B

beleache

New member
I go to Beth Israel in Manhattan , same as Mama Scarlet.. I switched from a center on Long Island, NY to St. Vincent's in Manhattan a few years back after Melissa & Graves talked me into it lol They knew I wasn't happy @ my previous center anymore.
I loved St. Vincent's & the entire team went over to BI after St. Vincent's closed down. I think it takes some time to have that close bond w/ a team & I feel very comfortable there & have faith in my team <img src="i/expressions/face-icon-small-smile.gif" border="0"> Which as we all know is a biggie !
As Mama Scarlet said, the office could be run better, but I think it is getting there. Im going to give them a 4.5
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
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ryry11

New member
I go to Seattle Children's now, and it's wonderful. I loved the Spokane clinic, but Children's is just top-notch. I was admitted there for the first time, with doctors I had never met before, and I was comfortable within the first 15 minutes. Dr. Hoffman, the doctor I saw the first night in the hospital, immediately made me feel comfortable, even though I was very unhappy about being admitted. He always, always takes me seriously, even if it's little stuff, he listens to what I'm saying, and I never feel rushed. I feel comfortable suggesting stuff, but also feel comfortable saying that I'd like to hold off on starting something. I would rate it 5 stars. They could be faster in calling me back, but they're also a pretty busy clinic.
 
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ryry11

New member
I go to Seattle Children's now, and it's wonderful. I loved the Spokane clinic, but Children's is just top-notch. I was admitted there for the first time, with doctors I had never met before, and I was comfortable within the first 15 minutes. Dr. Hoffman, the doctor I saw the first night in the hospital, immediately made me feel comfortable, even though I was very unhappy about being admitted. He always, always takes me seriously, even if it's little stuff, he listens to what I'm saying, and I never feel rushed. I feel comfortable suggesting stuff, but also feel comfortable saying that I'd like to hold off on starting something. I would rate it 5 stars. They could be faster in calling me back, but they're also a pretty busy clinic.
 
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