Frustrated with "adult" transitions?

elrustad · Apr 2, 2009

Frustrated with "adult

The transition for me was quite easy. The doctors here at the MN CF Center at the University of MN were great with the transition. They made me feel good about the change.

It was the best move for me but I wasn't diagnosed until I was 27 and I have had my adult CF doctor for 6 years now. I was only with a pediatric one for 4 years.

Eric

elrustad · Apr 2, 2009

Frustrated with "adult

The transition for me was quite easy. The doctors here at the MN CF Center at the University of MN were great with the transition. They made me feel good about the change.

It was the best move for me but I wasn't diagnosed until I was 27 and I have had my adult CF doctor for 6 years now. I was only with a pediatric one for 4 years.

Eric

elrustad · Apr 2, 2009

Frustrated with "adult

The transition for me was quite easy. The doctors here at the MN CF Center at the University of MN were great with the transition. They made me feel good about the change.

It was the best move for me but I wasn't diagnosed until I was 27 and I have had my adult CF doctor for 6 years now. I was only with a pediatric one for 4 years.

Eric

elrustad · Apr 2, 2009

Frustrated with "adult

The transition for me was quite easy. The doctors here at the MN CF Center at the University of MN were great with the transition. They made me feel good about the change.

It was the best move for me but I wasn't diagnosed until I was 27 and I have had my adult CF doctor for 6 years now. I was only with a pediatric one for 4 years.

Eric

elrustad · Apr 2, 2009

Frustrated with "adult

The transition for me was quite easy. The doctors here at the MN CF Center at the University of MN were great with the transition. They made me feel good about the change.
 
 It was the best move for me but I wasn't diagnosed until I was 27 and I have had my adult CF doctor for 6 years now. I was only with a pediatric one for 4 years.
 
 Eric

saveferris2009 · Apr 3, 2009

Frustrated with

the quality of care for everyone decreases if there are too many patients at one CF center.

CFer's are incredibly expensive to care for so the answer to "there are too many patients" can't always be "hire more docs."

as CFer's live longer, transitioning to an adult CF clinic is that much more essential.

easier said than done if your adult CF center sucks.

but you control the controllable, right? you're on this board, so you're taking steps to advocating for yourself and telling your docs what you need. you know what type of care others are receiving, so you can be proactive in your care in making sure you get what you need.

again, easier said than done, i know. but to understand the "why" is the 1st step towards making things better. because frankly, the adult rule most likely isn't going to change.

maybe YOU can be the one to bring change to your doc office. my doc office hasn't been perfect either - in fact the more studying i did, the more i found out how sub-par they were.

but i caught them up to speed - because of my discussions & some other CFer's at my clinic's discussions with my doc, my clinic of 150 patients has the option of the efLow. they hear about not just Hillrom vest options, but Respirtech options. they can be on fizzy NAC if they want.

the point is that you have the power to bring change. probably not something you want to do right now because you're not feeling so hot (I hope you feel better soon <img src="i/expressions/face-icon-small-sad.gif" border="0"> ). but when things stabilize, be the voice of change. you could end up being the hero for other CFer's at your clinic because you have the courage to lead the fight towards the care you all deserve!!!!

FIGHT ON

saveferris2009 · Apr 3, 2009

Frustrated with

the quality of care for everyone decreases if there are too many patients at one CF center.

CFer's are incredibly expensive to care for so the answer to "there are too many patients" can't always be "hire more docs."

as CFer's live longer, transitioning to an adult CF clinic is that much more essential.

easier said than done if your adult CF center sucks.

but you control the controllable, right? you're on this board, so you're taking steps to advocating for yourself and telling your docs what you need. you know what type of care others are receiving, so you can be proactive in your care in making sure you get what you need.

again, easier said than done, i know. but to understand the "why" is the 1st step towards making things better. because frankly, the adult rule most likely isn't going to change.

maybe YOU can be the one to bring change to your doc office. my doc office hasn't been perfect either - in fact the more studying i did, the more i found out how sub-par they were.

but i caught them up to speed - because of my discussions & some other CFer's at my clinic's discussions with my doc, my clinic of 150 patients has the option of the efLow. they hear about not just Hillrom vest options, but Respirtech options. they can be on fizzy NAC if they want.

the point is that you have the power to bring change. probably not something you want to do right now because you're not feeling so hot (I hope you feel better soon <img src="i/expressions/face-icon-small-sad.gif" border="0"> ). but when things stabilize, be the voice of change. you could end up being the hero for other CFer's at your clinic because you have the courage to lead the fight towards the care you all deserve!!!!

FIGHT ON

saveferris2009 · Apr 3, 2009

Frustrated with

the quality of care for everyone decreases if there are too many patients at one CF center.

CFer's are incredibly expensive to care for so the answer to "there are too many patients" can't always be "hire more docs."

as CFer's live longer, transitioning to an adult CF clinic is that much more essential.

easier said than done if your adult CF center sucks.

but you control the controllable, right? you're on this board, so you're taking steps to advocating for yourself and telling your docs what you need. you know what type of care others are receiving, so you can be proactive in your care in making sure you get what you need.

again, easier said than done, i know. but to understand the "why" is the 1st step towards making things better. because frankly, the adult rule most likely isn't going to change.

maybe YOU can be the one to bring change to your doc office. my doc office hasn't been perfect either - in fact the more studying i did, the more i found out how sub-par they were.

but i caught them up to speed - because of my discussions & some other CFer's at my clinic's discussions with my doc, my clinic of 150 patients has the option of the efLow. they hear about not just Hillrom vest options, but Respirtech options. they can be on fizzy NAC if they want.

the point is that you have the power to bring change. probably not something you want to do right now because you're not feeling so hot (I hope you feel better soon <img src="i/expressions/face-icon-small-sad.gif" border="0"> ). but when things stabilize, be the voice of change. you could end up being the hero for other CFer's at your clinic because you have the courage to lead the fight towards the care you all deserve!!!!

FIGHT ON

saveferris2009 · Apr 3, 2009

Frustrated with

the quality of care for everyone decreases if there are too many patients at one CF center.

CFer's are incredibly expensive to care for so the answer to "there are too many patients" can't always be "hire more docs."

as CFer's live longer, transitioning to an adult CF clinic is that much more essential.

easier said than done if your adult CF center sucks.

but you control the controllable, right? you're on this board, so you're taking steps to advocating for yourself and telling your docs what you need. you know what type of care others are receiving, so you can be proactive in your care in making sure you get what you need.

again, easier said than done, i know. but to understand the "why" is the 1st step towards making things better. because frankly, the adult rule most likely isn't going to change.

maybe YOU can be the one to bring change to your doc office. my doc office hasn't been perfect either - in fact the more studying i did, the more i found out how sub-par they were.

but i caught them up to speed - because of my discussions & some other CFer's at my clinic's discussions with my doc, my clinic of 150 patients has the option of the efLow. they hear about not just Hillrom vest options, but Respirtech options. they can be on fizzy NAC if they want.

the point is that you have the power to bring change. probably not something you want to do right now because you're not feeling so hot (I hope you feel better soon <img src="i/expressions/face-icon-small-sad.gif" border="0"> ). but when things stabilize, be the voice of change. you could end up being the hero for other CFer's at your clinic because you have the courage to lead the fight towards the care you all deserve!!!!

FIGHT ON

saveferris2009 · Apr 3, 2009

Frustrated with

the quality of care for everyone decreases if there are too many patients at one CF center.
 
 CFer's are incredibly expensive to care for so the answer to "there are too many patients" can't always be "hire more docs."
 
 as CFer's live longer, transitioning to an adult CF clinic is that much more essential.
 
 easier said than done if your adult CF center sucks.
 
 but you control the controllable, right? you're on this board, so you're taking steps to advocating for yourself and telling your docs what you need. you know what type of care others are receiving, so you can be proactive in your care in making sure you get what you need.
 
 again, easier said than done, i know. but to understand the "why" is the 1st step towards making things better. because frankly, the adult rule most likely isn't going to change.
 
 maybe YOU can be the one to bring change to your doc office. my doc office hasn't been perfect either - in fact the more studying i did, the more i found out how sub-par they were.
 
 but i caught them up to speed - because of my discussions & some other CFer's at my clinic's discussions with my doc, my clinic of 150 patients has the option of the efLow. they hear about not just Hillrom vest options, but Respirtech options. they can be on fizzy NAC if they want.
 
 the point is that you have the power to bring change. probably not something you want to do right now because you're not feeling so hot (I hope you feel better soon <img src="i/expressions/face-icon-small-sad.gif" border="0"> ). but when things stabilize, be the voice of change. you could end up being the hero for other CFer's at your clinic because you have the courage to lead the fight towards the care you all deserve!!!!
 
 FIGHT ON

cfsucks · Apr 4, 2009