old doctor or young?

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Havoc

New member
Yes, but if i read the original post correctly that's exactly what the doc said.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>robert321</b></i> "I'm not a molecular biologist, I concern myself with clinical data that is needed to treat patients and leave the drug development to those who are" </end quote>
He's saying he's not qualified to go speculating on the specifics of drug development, but is only interested in the clinical data that can help his patients. An honorable thing, I think.
 
H

Havoc

New member
Yes, but if i read the original post correctly that's exactly what the doc said.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>robert321</b></i> "I'm not a molecular biologist, I concern myself with clinical data that is needed to treat patients and leave the drug development to those who are" </end quote>
He's saying he's not qualified to go speculating on the specifics of drug development, but is only interested in the clinical data that can help his patients. An honorable thing, I think.
 
S

SIcklyhatED

New member
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>Printer</strong></em> You said that he is an older Doctor but new to treating CF. If you are not in an APPROVED CF CLINIC, run, don't walk to your nearest APPROVED CF CLINIC. Bill</end quote>
I'd have to strongly disagree with this. I despise the CF clinic where I'm at because they put you in a box regarding CF, and are only just now starting to realize that every patient is different. As a kid I went to the clinic, but we hated it so much that we found a wonderful pediatric pulmonologist who takes a great interest in CF and understands it a ton. I didn't go to the clinic for 10 years, but now have to start going again because when I turn 22 I can't see my pulmonologist anymore <img src="i/expressions/face-icon-small-sad.gif" border="0">. Not every CF clinic is created equal in wonderfulnss.
Plus, we found a great gastroentrologist who used to be the head of some CF clinic in Alaska, so there are other options.
Back to the topic: I'd prefer an in-between doctor, of course, but if I had to choose between the two extremes I'd say more of a newbie who's up to date. Having had experience with "traditional" doctors, you can en up going nowhere.
 
S

SIcklyhatED

New member
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>Printer</strong></em> You said that he is an older Doctor but new to treating CF. If you are not in an APPROVED CF CLINIC, run, don't walk to your nearest APPROVED CF CLINIC. Bill</end quote>
I'd have to strongly disagree with this. I despise the CF clinic where I'm at because they put you in a box regarding CF, and are only just now starting to realize that every patient is different. As a kid I went to the clinic, but we hated it so much that we found a wonderful pediatric pulmonologist who takes a great interest in CF and understands it a ton. I didn't go to the clinic for 10 years, but now have to start going again because when I turn 22 I can't see my pulmonologist anymore <img src="i/expressions/face-icon-small-sad.gif" border="0">. Not every CF clinic is created equal in wonderfulnss.
Plus, we found a great gastroentrologist who used to be the head of some CF clinic in Alaska, so there are other options.
Back to the topic: I'd prefer an in-between doctor, of course, but if I had to choose between the two extremes I'd say more of a newbie who's up to date. Having had experience with "traditional" doctors, you can en up going nowhere.
 
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drdanika

Guest
At my daughter's clinic, all the docs are involved in one way or another with research. I'm pretty sure that's how it works at most teaching hospitals. This helps them stay up to date, as they are often very much on the front line when it comes to new drugs and treatments. When we were in the hospital right after her diagnosis, we met most of the CF team, and were able to pick our doc. Some of the newer people, like the ones who have mostly treated kids diagnosed with newborn screening, said things to us that totally freaked us out. stuff like "I've never seen a CF kid this sick and this young." The older docs had an attitude that prior to 2000, many kids were diagnosed much like my daughter, and that they were confident that she would rebound nicely and be no worse off then if she had been caught in newborn screening.

We ended up going with a younger doc, but also see the director of the clinic sometimes. They are both great. The difference that I notice is that the younger docs seem to take more interest in her case, and appreciate that she may in fact be getting late start and that that may have negative side affects. The older docs however, are a little better at understanding the way CF affects a persons whole life. I think they understand better exactly how much effort it takes to get a 4 year old to do albuterol, saline, pulmozyme, tobi, and vest twice a day. And they are more compassionate about her having to go from 0 to 100 in a matter of days.

Oh, and I don't see myself EVER taking her to a non-CFF approved clinic for her care.

Caitlin
 
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drdanika

Guest
At my daughter's clinic, all the docs are involved in one way or another with research. I'm pretty sure that's how it works at most teaching hospitals. This helps them stay up to date, as they are often very much on the front line when it comes to new drugs and treatments. When we were in the hospital right after her diagnosis, we met most of the CF team, and were able to pick our doc. Some of the newer people, like the ones who have mostly treated kids diagnosed with newborn screening, said things to us that totally freaked us out. stuff like "I've never seen a CF kid this sick and this young." The older docs had an attitude that prior to 2000, many kids were diagnosed much like my daughter, and that they were confident that she would rebound nicely and be no worse off then if she had been caught in newborn screening.

We ended up going with a younger doc, but also see the director of the clinic sometimes. They are both great. The difference that I notice is that the younger docs seem to take more interest in her case, and appreciate that she may in fact be getting late start and that that may have negative side affects. The older docs however, are a little better at understanding the way CF affects a persons whole life. I think they understand better exactly how much effort it takes to get a 4 year old to do albuterol, saline, pulmozyme, tobi, and vest twice a day. And they are more compassionate about her having to go from 0 to 100 in a matter of days.

Oh, and I don't see myself EVER taking her to a non-CFF approved clinic for her care.

Caitlin
 
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robert321

New member
He is a part of the cf clinic but has been recently brought in as an "adult doctor" along with one other dr so I'm still with the same clinic just new dr.
Something my old dr would do is when discussing a new drug he would explain the background on it, how it was developed and by who, how it works, when it was discovered, what is expected to do, and I would leave the appointment with something close to a working knowledge of the drug instead of just a persription slip with instructions of "take 2 a day and I'll see you next time" kind of a thing. I realize there is a lot that isn't known about kalydeco as far as side effects and long term effects but I'm confident I know more about it than he does.
He has the attitude that "I know how to drive, I know how to start my car, I don't care how it works, I'll rely on the mechanic to tell me when I need to bring it in again. If it breaks I'll get someone else to fix it. Not because I'm not capable but because I don't want to." I'm sure thats something we can all relate to but I'm one of those people that want to know how it works, how it could work better, why it works, etc. whether cars or medicine. I have a level of expectation that my dr feel the same way to optimize the drugs available. Does that make sense?
 
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robert321

New member
He is a part of the cf clinic but has been recently brought in as an "adult doctor" along with one other dr so I'm still with the same clinic just new dr.
Something my old dr would do is when discussing a new drug he would explain the background on it, how it was developed and by who, how it works, when it was discovered, what is expected to do, and I would leave the appointment with something close to a working knowledge of the drug instead of just a persription slip with instructions of "take 2 a day and I'll see you next time" kind of a thing. I realize there is a lot that isn't known about kalydeco as far as side effects and long term effects but I'm confident I know more about it than he does.
He has the attitude that "I know how to drive, I know how to start my car, I don't care how it works, I'll rely on the mechanic to tell me when I need to bring it in again. If it breaks I'll get someone else to fix it. Not because I'm not capable but because I don't want to." I'm sure thats something we can all relate to but I'm one of those people that want to know how it works, how it could work better, why it works, etc. whether cars or medicine. I have a level of expectation that my dr feel the same way to optimize the drugs available. Does that make sense?
 
J

JustDucky

New member
I think most clinics are pretty good....it's a matter of personal preference though. I have gone to a few, but I am happiest with my current pulmo who's been treating me for over a decade (even before my CF dx) for other issues, and now my CF issues. He is an university doc who heads the bronchiectasis clinic and is well versed on CF, but isn't a CF accredited center. He has been the most aggressive with my care and is constantly researching new things....he is big on academia. I don't think I would be here if he weren't as on top of things with my care..

I think the important thing here is that you do your homework and go where you are most comfortable as well as getting great care whether it be at a CF accredited center or a pulmo who is well educated in CF as a whole. If you feel that your needs aren't being met, move on until you find the doctor/center that does.

Jenn 40 w/CF
 
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JustDucky

New member
I think most clinics are pretty good....it's a matter of personal preference though. I have gone to a few, but I am happiest with my current pulmo who's been treating me for over a decade (even before my CF dx) for other issues, and now my CF issues. He is an university doc who heads the bronchiectasis clinic and is well versed on CF, but isn't a CF accredited center. He has been the most aggressive with my care and is constantly researching new things....he is big on academia. I don't think I would be here if he weren't as on top of things with my care..

I think the important thing here is that you do your homework and go where you are most comfortable as well as getting great care whether it be at a CF accredited center or a pulmo who is well educated in CF as a whole. If you feel that your needs aren't being met, move on until you find the doctor/center that does.

Jenn 40 w/CF
 
H

Havoc

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>robert321</b></i> I'm one of those people that want to know how it works, how it could work better, why it works, etc. whether cars or medicine. I have a level of expectation that my dr feel the same way to optimize the drugs available. Does that make sense?</end quote>
Yes, it does make sense. I'm rather the same way, only I put the burden of knowing how things work on myself. Your doc may or may not read every published paper on every new treatment option, but you certainly can. In the end, you need to be your own advocate.
On a related note, my health was recently put at serious risk at an approved CF center with a doc who's been practicing for nearly 40 years. I had misgivings about what was going on, but ultimately trusted my doc. I shouldn't have. Long story short, I take responsibility for the quality of my healthcare and maintain an active role in my treatment plan. Since I no longer can trust that doc to put my health above his arrogance, I am changing centers.
It sounds as if you also take an active role in your treatment plan. As long as the doc retains an open mind, you shouldn't have any problems. The minute that changes, you'll have to re-evaluate the situation.
 
H

Havoc

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>robert321</b></i> I'm one of those people that want to know how it works, how it could work better, why it works, etc. whether cars or medicine. I have a level of expectation that my dr feel the same way to optimize the drugs available. Does that make sense?</end quote>
Yes, it does make sense. I'm rather the same way, only I put the burden of knowing how things work on myself. Your doc may or may not read every published paper on every new treatment option, but you certainly can. In the end, you need to be your own advocate.
On a related note, my health was recently put at serious risk at an approved CF center with a doc who's been practicing for nearly 40 years. I had misgivings about what was going on, but ultimately trusted my doc. I shouldn't have. Long story short, I take responsibility for the quality of my healthcare and maintain an active role in my treatment plan. Since I no longer can trust that doc to put my health above his arrogance, I am changing centers.
It sounds as if you also take an active role in your treatment plan. As long as the doc retains an open mind, you shouldn't have any problems. The minute that changes, you'll have to re-evaluate the situation.
 
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dukeblue1206

New member
I think I am lucky to have a CF Dr. who takes part in research and is also a very good Dr. with patients. Or at least he is with me. He fills me in every visit and any new research studies that are taking place at my center and if I qualify for any of them. He also lets me make a lot of my own decisions. He will give me a few options on what he thinks may be best for me and then we discuss them together. He has never said "this is what we are going to do no matter what." He may not do that with every patient he has but I think he does it with me cause he knows I take my health serious and that I know how my body feels and will be open enough to let him know.

I was seen by a local pulmo Dr from about the ages of 15-20 and my health really declined during that time. I was young and didn't know enough about my disease to describe certain ways about how I was feeling and he was not specialized in CF but more of a general knowledge of all pulmonary diseases. So for me a Dr who did not specialize in CF was a bad move for me. Since being at my CF clinic my health has really stabilized and I am happy for that.
 
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dukeblue1206

New member
I think I am lucky to have a CF Dr. who takes part in research and is also a very good Dr. with patients. Or at least he is with me. He fills me in every visit and any new research studies that are taking place at my center and if I qualify for any of them. He also lets me make a lot of my own decisions. He will give me a few options on what he thinks may be best for me and then we discuss them together. He has never said "this is what we are going to do no matter what." He may not do that with every patient he has but I think he does it with me cause he knows I take my health serious and that I know how my body feels and will be open enough to let him know.

I was seen by a local pulmo Dr from about the ages of 15-20 and my health really declined during that time. I was young and didn't know enough about my disease to describe certain ways about how I was feeling and he was not specialized in CF but more of a general knowledge of all pulmonary diseases. So for me a Dr who did not specialize in CF was a bad move for me. Since being at my CF clinic my health has really stabilized and I am happy for that.
 
L

lifeisgood729

Guest
For me, it's not about the doctor's age. I'm concerned about his/her knowledge, and also his/her willingness to communicate and listen to me. When my pediatric clinic found a new doc to take over all adult patients, he was someone "new to CF." I was accustomed to my peds doctor trusting me to know my own body. She listened when I described my symptoms, and she spoke to me like an intelligent adult. Over the years, I've been with other docs who speak to me as if they have to "dumb down" their conversation for me, so I know that's not something I can tolerate. This new adult doc was in the "dumb it down" camp.

Around the same time I had to switch, I experienced a 15% decrease in my FEV1. Scary, and very unusual for me since my decline had always been slow and steady. The new doc, instead of being concerned about the drop, only saw a number that looked "good" for someone my age. I think that since he had no experience with CF, he could only judge me based on what the textbooks said, which would say I was in good shape. He wasn't looking at me as an individual, but as a case of CF.

That should have been my sign to leave the clinic, but I stuck around for another year and a half.
My breaking point was when I had a massive bleed that required hospitalization. He never even followed up with me after I was discharged. The home care company just ended my IV treatments after two weeks, because the doctor never even called to ask if I was feeling well enough to end antibiotics. I felt like I was alone in my fight against CF. When I ran into him in the hospital a few weeks later, his question was, "Oh, how's that cough you had?" That was the day I requested that my records be transferred to a new clinic.

I've been to several different clinics in my life (because of college, moving, etc.) and I know there are plenty of CF docs out there who are willing to partner with their patients. They listen and trust their patients. I am extremely happy with my doctor now, and I will never again risk my health with an inexperienced/inattentive doctor.

Martha
44 w/CF, 3 kids with no CF
 
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lifeisgood729

Guest
For me, it's not about the doctor's age. I'm concerned about his/her knowledge, and also his/her willingness to communicate and listen to me. When my pediatric clinic found a new doc to take over all adult patients, he was someone "new to CF." I was accustomed to my peds doctor trusting me to know my own body. She listened when I described my symptoms, and she spoke to me like an intelligent adult. Over the years, I've been with other docs who speak to me as if they have to "dumb down" their conversation for me, so I know that's not something I can tolerate. This new adult doc was in the "dumb it down" camp.

Around the same time I had to switch, I experienced a 15% decrease in my FEV1. Scary, and very unusual for me since my decline had always been slow and steady. The new doc, instead of being concerned about the drop, only saw a number that looked "good" for someone my age. I think that since he had no experience with CF, he could only judge me based on what the textbooks said, which would say I was in good shape. He wasn't looking at me as an individual, but as a case of CF.

That should have been my sign to leave the clinic, but I stuck around for another year and a half.
My breaking point was when I had a massive bleed that required hospitalization. He never even followed up with me after I was discharged. The home care company just ended my IV treatments after two weeks, because the doctor never even called to ask if I was feeling well enough to end antibiotics. I felt like I was alone in my fight against CF. When I ran into him in the hospital a few weeks later, his question was, "Oh, how's that cough you had?" That was the day I requested that my records be transferred to a new clinic.

I've been to several different clinics in my life (because of college, moving, etc.) and I know there are plenty of CF docs out there who are willing to partner with their patients. They listen and trust their patients. I am extremely happy with my doctor now, and I will never again risk my health with an inexperienced/inattentive doctor.

Martha
44 w/CF, 3 kids with no CF
 
T

TreasureGoddess

Member
I second Jonathan's statements, TRUST YOUR GUT on the care you're receiving. My son was at a CF center, excellent doctors & staff but we weren't getting the care we needed. It took me too long to realize that I needed to ask for a 2nd opinion at another cf center. My son had a very crappy year and we're just now building his health back up. I felt guilty for just assuming we had the best care because the center is well known. BUT I'm glad we got moved when we did and glad I finally listened to that little voice.
 
T

TreasureGoddess

Member
I second Jonathan's statements, TRUST YOUR GUT on the care you're receiving. My son was at a CF center, excellent doctors & staff but we weren't getting the care we needed. It took me too long to realize that I needed to ask for a 2nd opinion at another cf center. My son had a very crappy year and we're just now building his health back up. I felt guilty for just assuming we had the best care because the center is well known. BUT I'm glad we got moved when we did and glad I finally listened to that little voice.
 
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