You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Disappointed with my CF clinic
- Thread starter lightNlife
- Start date
Mockingbird
New member
I don't think your new clinic has a lack of quality, they just take a different approach. When I have a full team standing over me all the time it is way too suffocating. I have a life to live, even if it is a little shorter in the long run I have a lot more time each day not having to do a bunch of preventative treatments. Yes, things get lost in the shuffle and it takes forever to get anything done, but that doesn't really bother me much. For me, the quality of care comes in the fact my doctors respect me enough to give me my space and are willing to treat me on my terms. Or, in others words, I would not say quality of life is necessarily tied to health or longevity.
If you are dissapointed with your clinic you should find a new one, but just understand that does not make your clinic a bad clinic, just a different one.
If you are dissapointed with your clinic you should find a new one, but just understand that does not make your clinic a bad clinic, just a different one.
Mockingbird
New member
I don't think your new clinic has a lack of quality, they just take a different approach. When I have a full team standing over me all the time it is way too suffocating. I have a life to live, even if it is a little shorter in the long run I have a lot more time each day not having to do a bunch of preventative treatments. Yes, things get lost in the shuffle and it takes forever to get anything done, but that doesn't really bother me much. For me, the quality of care comes in the fact my doctors respect me enough to give me my space and are willing to treat me on my terms. Or, in others words, I would not say quality of life is necessarily tied to health or longevity.
If you are dissapointed with your clinic you should find a new one, but just understand that does not make your clinic a bad clinic, just a different one.
If you are dissapointed with your clinic you should find a new one, but just understand that does not make your clinic a bad clinic, just a different one.
Mockingbird
New member
I don't think your new clinic has a lack of quality, they just take a different approach. When I have a full team standing over me all the time it is way too suffocating. I have a life to live, even if it is a little shorter in the long run I have a lot more time each day not having to do a bunch of preventative treatments. Yes, things get lost in the shuffle and it takes forever to get anything done, but that doesn't really bother me much. For me, the quality of care comes in the fact my doctors respect me enough to give me my space and are willing to treat me on my terms. Or, in others words, I would not say quality of life is necessarily tied to health or longevity.
If you are dissapointed with your clinic you should find a new one, but just understand that does not make your clinic a bad clinic, just a different one.
If you are dissapointed with your clinic you should find a new one, but just understand that does not make your clinic a bad clinic, just a different one.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mockingbird</b></i>
For me, the quality of care comes in the fact my doctors respect me enough to give me my space and are willing to treat me on my terms. Or, in others words, I would not say quality of life is necessarily tied to health or longevity.</end quote></div>
For once, Mockingbird...I agree with you <img src="i/expressions/face-icon-small-wink.gif" border="0"> Well said on that final statement. I would much rather have my docs leave the preventative care in my hands. My clinic works the same way. I call when I'm sick, and that's it, aside from check-ups every three months. Which is all I really need, in my opinion. That's just me, of course, and you all are entitled to how you want to be cared for. But I would personally rather live my life than have a doctor dictating every step of it.
However, I will say lightNlife, that I don't get why you only see your CF specialist twice a week when hospitalized. My doctor is rather scarce sometimes himself, but when I'm in the "slammer", he at least drops by my room daily. If you haven't already, I would at least address that issue with him/her personally.
For me, the quality of care comes in the fact my doctors respect me enough to give me my space and are willing to treat me on my terms. Or, in others words, I would not say quality of life is necessarily tied to health or longevity.</end quote></div>
For once, Mockingbird...I agree with you <img src="i/expressions/face-icon-small-wink.gif" border="0"> Well said on that final statement. I would much rather have my docs leave the preventative care in my hands. My clinic works the same way. I call when I'm sick, and that's it, aside from check-ups every three months. Which is all I really need, in my opinion. That's just me, of course, and you all are entitled to how you want to be cared for. But I would personally rather live my life than have a doctor dictating every step of it.
However, I will say lightNlife, that I don't get why you only see your CF specialist twice a week when hospitalized. My doctor is rather scarce sometimes himself, but when I'm in the "slammer", he at least drops by my room daily. If you haven't already, I would at least address that issue with him/her personally.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mockingbird</b></i>
For me, the quality of care comes in the fact my doctors respect me enough to give me my space and are willing to treat me on my terms. Or, in others words, I would not say quality of life is necessarily tied to health or longevity.</end quote></div>
For once, Mockingbird...I agree with you <img src="i/expressions/face-icon-small-wink.gif" border="0"> Well said on that final statement. I would much rather have my docs leave the preventative care in my hands. My clinic works the same way. I call when I'm sick, and that's it, aside from check-ups every three months. Which is all I really need, in my opinion. That's just me, of course, and you all are entitled to how you want to be cared for. But I would personally rather live my life than have a doctor dictating every step of it.
However, I will say lightNlife, that I don't get why you only see your CF specialist twice a week when hospitalized. My doctor is rather scarce sometimes himself, but when I'm in the "slammer", he at least drops by my room daily. If you haven't already, I would at least address that issue with him/her personally.
For me, the quality of care comes in the fact my doctors respect me enough to give me my space and are willing to treat me on my terms. Or, in others words, I would not say quality of life is necessarily tied to health or longevity.</end quote></div>
For once, Mockingbird...I agree with you <img src="i/expressions/face-icon-small-wink.gif" border="0"> Well said on that final statement. I would much rather have my docs leave the preventative care in my hands. My clinic works the same way. I call when I'm sick, and that's it, aside from check-ups every three months. Which is all I really need, in my opinion. That's just me, of course, and you all are entitled to how you want to be cared for. But I would personally rather live my life than have a doctor dictating every step of it.
However, I will say lightNlife, that I don't get why you only see your CF specialist twice a week when hospitalized. My doctor is rather scarce sometimes himself, but when I'm in the "slammer", he at least drops by my room daily. If you haven't already, I would at least address that issue with him/her personally.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mockingbird</b></i>
For me, the quality of care comes in the fact my doctors respect me enough to give me my space and are willing to treat me on my terms. Or, in others words, I would not say quality of life is necessarily tied to health or longevity.</end quote></div>
For once, Mockingbird...I agree with you <img src="i/expressions/face-icon-small-wink.gif" border="0"> Well said on that final statement. I would much rather have my docs leave the preventative care in my hands. My clinic works the same way. I call when I'm sick, and that's it, aside from check-ups every three months. Which is all I really need, in my opinion. That's just me, of course, and you all are entitled to how you want to be cared for. But I would personally rather live my life than have a doctor dictating every step of it.
However, I will say lightNlife, that I don't get why you only see your CF specialist twice a week when hospitalized. My doctor is rather scarce sometimes himself, but when I'm in the "slammer", he at least drops by my room daily. If you haven't already, I would at least address that issue with him/her personally.
For me, the quality of care comes in the fact my doctors respect me enough to give me my space and are willing to treat me on my terms. Or, in others words, I would not say quality of life is necessarily tied to health or longevity.</end quote></div>
For once, Mockingbird...I agree with you <img src="i/expressions/face-icon-small-wink.gif" border="0"> Well said on that final statement. I would much rather have my docs leave the preventative care in my hands. My clinic works the same way. I call when I'm sick, and that's it, aside from check-ups every three months. Which is all I really need, in my opinion. That's just me, of course, and you all are entitled to how you want to be cared for. But I would personally rather live my life than have a doctor dictating every step of it.
However, I will say lightNlife, that I don't get why you only see your CF specialist twice a week when hospitalized. My doctor is rather scarce sometimes himself, but when I'm in the "slammer", he at least drops by my room daily. If you haven't already, I would at least address that issue with him/her personally.
We have issues with our local cf clinic and it recently became accreditted. Our primary doctor is an infectious disease specialist whose been treating CFers for 25-30 year. We still go to the peds doctor locally, who runs the CF clinic, but because of concerns with their not being proactive enough, cross contamination.... We just take ds to the local peds clinic to see him and they order his labs, etc. We're in the process of trying to find a local doctor --there's one at another clinic who apparently has two cfers of his own and treats local cfers.
We have issues with our local cf clinic and it recently became accreditted. Our primary doctor is an infectious disease specialist whose been treating CFers for 25-30 year. We still go to the peds doctor locally, who runs the CF clinic, but because of concerns with their not being proactive enough, cross contamination.... We just take ds to the local peds clinic to see him and they order his labs, etc. We're in the process of trying to find a local doctor --there's one at another clinic who apparently has two cfers of his own and treats local cfers.
We have issues with our local cf clinic and it recently became accreditted. Our primary doctor is an infectious disease specialist whose been treating CFers for 25-30 year. We still go to the peds doctor locally, who runs the CF clinic, but because of concerns with their not being proactive enough, cross contamination.... We just take ds to the local peds clinic to see him and they order his labs, etc. We're in the process of trying to find a local doctor --there's one at another clinic who apparently has two cfers of his own and treats local cfers.
lightNlife
New member
The CF specialist only drops by twice a week because the hospital chief mucky-mucks have reduced his status to only "Consulting physician." It's a political thing within the hospital and has a lot to do with how he has to bill his hours.
Bottom line, his patients get the short end of the stick. I'll leave it to your imagination where that stick goes.
Bottom line, his patients get the short end of the stick. I'll leave it to your imagination where that stick goes.
lightNlife
New member
The CF specialist only drops by twice a week because the hospital chief mucky-mucks have reduced his status to only "Consulting physician." It's a political thing within the hospital and has a lot to do with how he has to bill his hours.
Bottom line, his patients get the short end of the stick. I'll leave it to your imagination where that stick goes.
Bottom line, his patients get the short end of the stick. I'll leave it to your imagination where that stick goes.
lightNlife
New member
The CF specialist only drops by twice a week because the hospital chief mucky-mucks have reduced his status to only "Consulting physician." It's a political thing within the hospital and has a lot to do with how he has to bill his hours.
Bottom line, his patients get the short end of the stick. I'll leave it to your imagination where that stick goes.
Bottom line, his patients get the short end of the stick. I'll leave it to your imagination where that stick goes.
i have had two private docs and am currently at an accredited cf center. my experience with private docs has been way less than satisfactory. the last one didn't know squat about cf, and to make matters worse, he was unwilling to hear me out on anything. doing much of my own research was useless because he was the doc and i was the patient. he was the only pulmonologist available to me at the time, and when i could get seen at a center, i switched immediately.
the other time was right after i turned 18 and the pediatric cf specialist i saw would no longer see me. i went to a pulmonologist who was right upstairs, then went to a gastro guy down the hall. i guess the experience with them wasn't horrible per se, but my intussuseption got by both of them for five years, until an e.r. nurse tried calling my bluff on my abdominal pain, and i was scehduled for an immediate endoscopy.
in short, my experience has been much better at a center, but i'm sure it has a lot to do with the team. the team at uihc seems to have their spit together; i'm in and out under two hours (it takes longer to drive there!!) and conversations pick up practically where they left off three months prior.
after all that, my input boils down to what others have already stated. try talking to your team, or if you're just plain fed up and want to try a different route, be prepared to do lots of cf footwork on your own (not you don't already!!), and be sure to find pulmonologist that is willing to learn form you. after all, what good is doing your own research if the doc won't listen?
the other time was right after i turned 18 and the pediatric cf specialist i saw would no longer see me. i went to a pulmonologist who was right upstairs, then went to a gastro guy down the hall. i guess the experience with them wasn't horrible per se, but my intussuseption got by both of them for five years, until an e.r. nurse tried calling my bluff on my abdominal pain, and i was scehduled for an immediate endoscopy.
in short, my experience has been much better at a center, but i'm sure it has a lot to do with the team. the team at uihc seems to have their spit together; i'm in and out under two hours (it takes longer to drive there!!) and conversations pick up practically where they left off three months prior.
after all that, my input boils down to what others have already stated. try talking to your team, or if you're just plain fed up and want to try a different route, be prepared to do lots of cf footwork on your own (not you don't already!!), and be sure to find pulmonologist that is willing to learn form you. after all, what good is doing your own research if the doc won't listen?
i have had two private docs and am currently at an accredited cf center. my experience with private docs has been way less than satisfactory. the last one didn't know squat about cf, and to make matters worse, he was unwilling to hear me out on anything. doing much of my own research was useless because he was the doc and i was the patient. he was the only pulmonologist available to me at the time, and when i could get seen at a center, i switched immediately.
the other time was right after i turned 18 and the pediatric cf specialist i saw would no longer see me. i went to a pulmonologist who was right upstairs, then went to a gastro guy down the hall. i guess the experience with them wasn't horrible per se, but my intussuseption got by both of them for five years, until an e.r. nurse tried calling my bluff on my abdominal pain, and i was scehduled for an immediate endoscopy.
in short, my experience has been much better at a center, but i'm sure it has a lot to do with the team. the team at uihc seems to have their spit together; i'm in and out under two hours (it takes longer to drive there!!) and conversations pick up practically where they left off three months prior.
after all that, my input boils down to what others have already stated. try talking to your team, or if you're just plain fed up and want to try a different route, be prepared to do lots of cf footwork on your own (not you don't already!!), and be sure to find pulmonologist that is willing to learn form you. after all, what good is doing your own research if the doc won't listen?
the other time was right after i turned 18 and the pediatric cf specialist i saw would no longer see me. i went to a pulmonologist who was right upstairs, then went to a gastro guy down the hall. i guess the experience with them wasn't horrible per se, but my intussuseption got by both of them for five years, until an e.r. nurse tried calling my bluff on my abdominal pain, and i was scehduled for an immediate endoscopy.
in short, my experience has been much better at a center, but i'm sure it has a lot to do with the team. the team at uihc seems to have their spit together; i'm in and out under two hours (it takes longer to drive there!!) and conversations pick up practically where they left off three months prior.
after all that, my input boils down to what others have already stated. try talking to your team, or if you're just plain fed up and want to try a different route, be prepared to do lots of cf footwork on your own (not you don't already!!), and be sure to find pulmonologist that is willing to learn form you. after all, what good is doing your own research if the doc won't listen?
i have had two private docs and am currently at an accredited cf center. my experience with private docs has been way less than satisfactory. the last one didn't know squat about cf, and to make matters worse, he was unwilling to hear me out on anything. doing much of my own research was useless because he was the doc and i was the patient. he was the only pulmonologist available to me at the time, and when i could get seen at a center, i switched immediately.
the other time was right after i turned 18 and the pediatric cf specialist i saw would no longer see me. i went to a pulmonologist who was right upstairs, then went to a gastro guy down the hall. i guess the experience with them wasn't horrible per se, but my intussuseption got by both of them for five years, until an e.r. nurse tried calling my bluff on my abdominal pain, and i was scehduled for an immediate endoscopy.
in short, my experience has been much better at a center, but i'm sure it has a lot to do with the team. the team at uihc seems to have their spit together; i'm in and out under two hours (it takes longer to drive there!!) and conversations pick up practically where they left off three months prior.
after all that, my input boils down to what others have already stated. try talking to your team, or if you're just plain fed up and want to try a different route, be prepared to do lots of cf footwork on your own (not you don't already!!), and be sure to find pulmonologist that is willing to learn form you. after all, what good is doing your own research if the doc won't listen?
the other time was right after i turned 18 and the pediatric cf specialist i saw would no longer see me. i went to a pulmonologist who was right upstairs, then went to a gastro guy down the hall. i guess the experience with them wasn't horrible per se, but my intussuseption got by both of them for five years, until an e.r. nurse tried calling my bluff on my abdominal pain, and i was scehduled for an immediate endoscopy.
in short, my experience has been much better at a center, but i'm sure it has a lot to do with the team. the team at uihc seems to have their spit together; i'm in and out under two hours (it takes longer to drive there!!) and conversations pick up practically where they left off three months prior.
after all that, my input boils down to what others have already stated. try talking to your team, or if you're just plain fed up and want to try a different route, be prepared to do lots of cf footwork on your own (not you don't already!!), and be sure to find pulmonologist that is willing to learn form you. after all, what good is doing your own research if the doc won't listen?
lightNlife
New member
Thanks kswitch, that answers my question really well. You're right, it depends a lot on the center. Thanks for describing you experiences. That's what I posted my message for--to hear multiple points of view.
Thanks!
Thanks!