CF's in California

senatorgraham · Jan 17, 2009

Dear CfBigBrother,

I live just outside of Fresno. To my knowledge there is no CF center in Fresno. There is Central Valley Childrens' Hospital, which use to be located in Fresno, but moved to Madera some years ago.

I was a CF patient at Childrens when it was in Fresno, and when it moved to Madera, until they stopped seeing adult patients.

Currently, I am seen at UCSF, where I had my Bi-lateral lung transplant in December 2002.

I belive both to be great centers and would recommend either. Good luck on your search, I hope you find one that works for you!

senatorgraham · Jan 17, 2009

Dear CfBigBrother,

I live just outside of Fresno. To my knowledge there is no CF center in Fresno. There is Central Valley Childrens' Hospital, which use to be located in Fresno, but moved to Madera some years ago.

I was a CF patient at Childrens when it was in Fresno, and when it moved to Madera, until they stopped seeing adult patients.

Currently, I am seen at UCSF, where I had my Bi-lateral lung transplant in December 2002.

I belive both to be great centers and would recommend either. Good luck on your search, I hope you find one that works for you!

senatorgraham · Jan 17, 2009

Dear CfBigBrother,

I live just outside of Fresno. To my knowledge there is no CF center in Fresno. There is Central Valley Childrens' Hospital, which use to be located in Fresno, but moved to Madera some years ago.

I was a CF patient at Childrens when it was in Fresno, and when it moved to Madera, until they stopped seeing adult patients.

Currently, I am seen at UCSF, where I had my Bi-lateral lung transplant in December 2002.

I belive both to be great centers and would recommend either. Good luck on your search, I hope you find one that works for you!

senatorgraham · Jan 17, 2009

Dear CfBigBrother,

I live just outside of Fresno. To my knowledge there is no CF center in Fresno. There is Central Valley Childrens' Hospital, which use to be located in Fresno, but moved to Madera some years ago.

I was a CF patient at Childrens when it was in Fresno, and when it moved to Madera, until they stopped seeing adult patients.

Currently, I am seen at UCSF, where I had my Bi-lateral lung transplant in December 2002.

I belive both to be great centers and would recommend either. Good luck on your search, I hope you find one that works for you!

senatorgraham · Jan 17, 2009

Dear CfBigBrother,
 
 I live just outside of Fresno. To my knowledge there is no CF center in Fresno. There is Central Valley Childrens' Hospital, which use to be located in Fresno, but moved to Madera some years ago.
 
 I was a CF patient at Childrens when it was in Fresno, and when it moved to Madera, until they stopped seeing adult patients.
 
 Currently, I am seen at UCSF, where I had my Bi-lateral lung transplant in December 2002.
 
 I belive both to be great centers and would recommend either. Good luck on your search, I hope you find one that works for you!

paysmom · Jan 17, 2009

We live in Hanford so we go to valley childrens but they did stop seeing people over 18. I love them and my son loves it to. I would not look at there statistics because alot of kids dont go to there visits so there not to acurate. I did ask them at our last visit some questions. No one they see has cepicia and they a have room for kids with mrsa. They are on top of things the only thing is we do not do home iv's. They are proactive. Getting appontments are a little hard to get. if you have any other questions pm me.

paysmom · Jan 17, 2009

We live in Hanford so we go to valley childrens but they did stop seeing people over 18. I love them and my son loves it to. I would not look at there statistics because alot of kids dont go to there visits so there not to acurate. I did ask them at our last visit some questions. No one they see has cepicia and they a have room for kids with mrsa. They are on top of things the only thing is we do not do home iv's. They are proactive. Getting appontments are a little hard to get. if you have any other questions pm me.

paysmom · Jan 17, 2009

We live in Hanford so we go to valley childrens but they did stop seeing people over 18. I love them and my son loves it to. I would not look at there statistics because alot of kids dont go to there visits so there not to acurate. I did ask them at our last visit some questions. No one they see has cepicia and they a have room for kids with mrsa. They are on top of things the only thing is we do not do home iv's. They are proactive. Getting appontments are a little hard to get. if you have any other questions pm me.

paysmom · Jan 17, 2009

We live in Hanford so we go to valley childrens but they did stop seeing people over 18. I love them and my son loves it to. I would not look at there statistics because alot of kids dont go to there visits so there not to acurate. I did ask them at our last visit some questions. No one they see has cepicia and they a have room for kids with mrsa. They are on top of things the only thing is we do not do home iv's. They are proactive. Getting appontments are a little hard to get. if you have any other questions pm me.

paysmom · Jan 17, 2009

We live in Hanford so we go to valley childrens but they did stop seeing people over 18. I love them and my son loves it to. I would not look at there statistics because alot of kids dont go to there visits so there not to acurate. I did ask them at our last visit some questions. No one they see has cepicia and they a have room for kids with mrsa. They are on top of things the only thing is we do not do home iv's. They are proactive. Getting appontments are a little hard to get. if you have any other questions pm me.

jodijp · Jan 17, 2009

I can tell you that Long Beach will most likely be out of your choices. We had about 80 adult patients be shut out of clinic in Orange County in April of last year because an adult CF doc could not be found.

We all had to scramble to find a new clinic somewhere in SoCal. Long Beach only accepted a few patients and then could take no more. There is talk of the Long Beach director wanting to retire as well which may put that center in jeopardy.

USC and UCSD absorbed quite a few of the displaced CHOC patients, USC is overloaded, but not sure of UCSD. If I were you, I'd stay to the north. We have a severe shortage of CF centers in SoCal. And as kids transition to adult centers, it will only be worse. <img src="i/expressions/face-icon-small-sad.gif" border="0">

jodijp · Jan 17, 2009

I can tell you that Long Beach will most likely be out of your choices. We had about 80 adult patients be shut out of clinic in Orange County in April of last year because an adult CF doc could not be found.

We all had to scramble to find a new clinic somewhere in SoCal. Long Beach only accepted a few patients and then could take no more. There is talk of the Long Beach director wanting to retire as well which may put that center in jeopardy.

USC and UCSD absorbed quite a few of the displaced CHOC patients, USC is overloaded, but not sure of UCSD. If I were you, I'd stay to the north. We have a severe shortage of CF centers in SoCal. And as kids transition to adult centers, it will only be worse. <img src="i/expressions/face-icon-small-sad.gif" border="0">

jodijp · Jan 17, 2009

I can tell you that Long Beach will most likely be out of your choices. We had about 80 adult patients be shut out of clinic in Orange County in April of last year because an adult CF doc could not be found.

We all had to scramble to find a new clinic somewhere in SoCal. Long Beach only accepted a few patients and then could take no more. There is talk of the Long Beach director wanting to retire as well which may put that center in jeopardy.

USC and UCSD absorbed quite a few of the displaced CHOC patients, USC is overloaded, but not sure of UCSD. If I were you, I'd stay to the north. We have a severe shortage of CF centers in SoCal. And as kids transition to adult centers, it will only be worse. <img src="i/expressions/face-icon-small-sad.gif" border="0">

jodijp · Jan 17, 2009

I can tell you that Long Beach will most likely be out of your choices. We had about 80 adult patients be shut out of clinic in Orange County in April of last year because an adult CF doc could not be found.

We all had to scramble to find a new clinic somewhere in SoCal. Long Beach only accepted a few patients and then could take no more. There is talk of the Long Beach director wanting to retire as well which may put that center in jeopardy.

USC and UCSD absorbed quite a few of the displaced CHOC patients, USC is overloaded, but not sure of UCSD. If I were you, I'd stay to the north. We have a severe shortage of CF centers in SoCal. And as kids transition to adult centers, it will only be worse. <img src="i/expressions/face-icon-small-sad.gif" border="0">

jodijp · Jan 17, 2009

I can tell you that Long Beach will most likely be out of your choices. We had about 80 adult patients be shut out of clinic in Orange County in April of last year because an adult CF doc could not be found.
 
 We all had to scramble to find a new clinic somewhere in SoCal. Long Beach only accepted a few patients and then could take no more. There is talk of the Long Beach director wanting to retire as well which may put that center in jeopardy.
 
 USC and UCSD absorbed quite a few of the displaced CHOC patients, USC is overloaded, but not sure of UCSD. If I were you, I'd stay to the north. We have a severe shortage of CF centers in SoCal. And as kids transition to adult centers, it will only be worse. <img src="i/expressions/face-icon-small-sad.gif" border="0">

jrotier · Jan 18, 2009

Hi. I'm relatively new to the Forums thing, so I hope I post this right...

I recently relocated to CA as well, back in July and I go to Stanford. I am 26, but am seeing one of the peds docs. When I moved, the adult clinic was in the process of some transitions, so all the adult docs were full. They have recently added a few more adult docs so I'm sure I'll be switching soon. I'll try the best I can to answer your questions..

How aggressive are the doctors with managing your disease?
---I'd say farily agressive, I have good FEV's, and I got a bad cold that developed into an exacerbation. They were very quick about getting me on some orals, and when that didn't work, I did colistin. I'm sure the next thing would have been iv's, but I felt they were agressive enough to make sure it did not get to that point.
How good are the doctors/nurses about getting back to you when there is a problem?
---Great! For sick calls, I have always heard back that day. I've never had to use the on-call doc, so I can't speak to that though. Even for non-urgent, I've never waited more than a day.
How proactive is the team?
---Hard to say since I have't been there that long, but they are running all the proactive tests...OGTT test, bone density scan, ect to get baseline readings
How do you feel the quality of the team is overall?
---I've been to 5 different CF centers and I have been the most pleased with this one so far. I feel the staff is very knowledgeble, and listens to me, instead of saying "Good, your're doing fine see you in 3 months."
How easy is it to get an appointment?
---Haven't had any trouble, even for my first appt, the wait was only 2 weeks. When I was sick, I got in the next day my doc was in (I choose to wait for him, they could've gotten me in that day if I had wanted)
HOw well does the clinic run?
---I'd say pretty well, more organized than other's I've been to.
HOw do you like the hospital?
---Haven't done IV's yet, so I can't really say
Does your clinic do tune ups?
---Again, haven't needed IV's, but when I was sick, they asked my plans for the holdiays...made me feel as though they were willing to work with me to keep me off IV's if I was going out of town...but luckily the colistin helped
Do you feel that your clinic is cutting edge?
---Well, one of the first things they did was get me a Vest. Not tht it is "cutting edge" but I felt like they looked at me, saw I ws doing well, and then looked at what else I could be doing, rather than just staying with my "status quo"

I hope this helps!

Jackie, 26 w/cf

jrotier · Jan 18, 2009

Hi. I'm relatively new to the Forums thing, so I hope I post this right...

I recently relocated to CA as well, back in July and I go to Stanford. I am 26, but am seeing one of the peds docs. When I moved, the adult clinic was in the process of some transitions, so all the adult docs were full. They have recently added a few more adult docs so I'm sure I'll be switching soon. I'll try the best I can to answer your questions..

How aggressive are the doctors with managing your disease?
---I'd say farily agressive, I have good FEV's, and I got a bad cold that developed into an exacerbation. They were very quick about getting me on some orals, and when that didn't work, I did colistin. I'm sure the next thing would have been iv's, but I felt they were agressive enough to make sure it did not get to that point.
How good are the doctors/nurses about getting back to you when there is a problem?
---Great! For sick calls, I have always heard back that day. I've never had to use the on-call doc, so I can't speak to that though. Even for non-urgent, I've never waited more than a day.
How proactive is the team?
---Hard to say since I have't been there that long, but they are running all the proactive tests...OGTT test, bone density scan, ect to get baseline readings
How do you feel the quality of the team is overall?
---I've been to 5 different CF centers and I have been the most pleased with this one so far. I feel the staff is very knowledgeble, and listens to me, instead of saying "Good, your're doing fine see you in 3 months."
How easy is it to get an appointment?
---Haven't had any trouble, even for my first appt, the wait was only 2 weeks. When I was sick, I got in the next day my doc was in (I choose to wait for him, they could've gotten me in that day if I had wanted)
HOw well does the clinic run?
---I'd say pretty well, more organized than other's I've been to.
HOw do you like the hospital?
---Haven't done IV's yet, so I can't really say
Does your clinic do tune ups?
---Again, haven't needed IV's, but when I was sick, they asked my plans for the holdiays...made me feel as though they were willing to work with me to keep me off IV's if I was going out of town...but luckily the colistin helped
Do you feel that your clinic is cutting edge?
---Well, one of the first things they did was get me a Vest. Not tht it is "cutting edge" but I felt like they looked at me, saw I ws doing well, and then looked at what else I could be doing, rather than just staying with my "status quo"

I hope this helps!

Jackie, 26 w/cf

jrotier · Jan 18, 2009

Hi. I'm relatively new to the Forums thing, so I hope I post this right...

I recently relocated to CA as well, back in July and I go to Stanford. I am 26, but am seeing one of the peds docs. When I moved, the adult clinic was in the process of some transitions, so all the adult docs were full. They have recently added a few more adult docs so I'm sure I'll be switching soon. I'll try the best I can to answer your questions..

How aggressive are the doctors with managing your disease?
---I'd say farily agressive, I have good FEV's, and I got a bad cold that developed into an exacerbation. They were very quick about getting me on some orals, and when that didn't work, I did colistin. I'm sure the next thing would have been iv's, but I felt they were agressive enough to make sure it did not get to that point.
How good are the doctors/nurses about getting back to you when there is a problem?
---Great! For sick calls, I have always heard back that day. I've never had to use the on-call doc, so I can't speak to that though. Even for non-urgent, I've never waited more than a day.
How proactive is the team?
---Hard to say since I have't been there that long, but they are running all the proactive tests...OGTT test, bone density scan, ect to get baseline readings
How do you feel the quality of the team is overall?
---I've been to 5 different CF centers and I have been the most pleased with this one so far. I feel the staff is very knowledgeble, and listens to me, instead of saying "Good, your're doing fine see you in 3 months."
How easy is it to get an appointment?
---Haven't had any trouble, even for my first appt, the wait was only 2 weeks. When I was sick, I got in the next day my doc was in (I choose to wait for him, they could've gotten me in that day if I had wanted)
HOw well does the clinic run?
---I'd say pretty well, more organized than other's I've been to.
HOw do you like the hospital?
---Haven't done IV's yet, so I can't really say
Does your clinic do tune ups?
---Again, haven't needed IV's, but when I was sick, they asked my plans for the holdiays...made me feel as though they were willing to work with me to keep me off IV's if I was going out of town...but luckily the colistin helped
Do you feel that your clinic is cutting edge?
---Well, one of the first things they did was get me a Vest. Not tht it is "cutting edge" but I felt like they looked at me, saw I ws doing well, and then looked at what else I could be doing, rather than just staying with my "status quo"

I hope this helps!

Jackie, 26 w/cf

jrotier · Jan 18, 2009

Hi. I'm relatively new to the Forums thing, so I hope I post this right...

I recently relocated to CA as well, back in July and I go to Stanford. I am 26, but am seeing one of the peds docs. When I moved, the adult clinic was in the process of some transitions, so all the adult docs were full. They have recently added a few more adult docs so I'm sure I'll be switching soon. I'll try the best I can to answer your questions..

How aggressive are the doctors with managing your disease?
---I'd say farily agressive, I have good FEV's, and I got a bad cold that developed into an exacerbation. They were very quick about getting me on some orals, and when that didn't work, I did colistin. I'm sure the next thing would have been iv's, but I felt they were agressive enough to make sure it did not get to that point.
How good are the doctors/nurses about getting back to you when there is a problem?
---Great! For sick calls, I have always heard back that day. I've never had to use the on-call doc, so I can't speak to that though. Even for non-urgent, I've never waited more than a day.
How proactive is the team?
---Hard to say since I have't been there that long, but they are running all the proactive tests...OGTT test, bone density scan, ect to get baseline readings
How do you feel the quality of the team is overall?
---I've been to 5 different CF centers and I have been the most pleased with this one so far. I feel the staff is very knowledgeble, and listens to me, instead of saying "Good, your're doing fine see you in 3 months."
How easy is it to get an appointment?
---Haven't had any trouble, even for my first appt, the wait was only 2 weeks. When I was sick, I got in the next day my doc was in (I choose to wait for him, they could've gotten me in that day if I had wanted)
HOw well does the clinic run?
---I'd say pretty well, more organized than other's I've been to.
HOw do you like the hospital?
---Haven't done IV's yet, so I can't really say
Does your clinic do tune ups?
---Again, haven't needed IV's, but when I was sick, they asked my plans for the holdiays...made me feel as though they were willing to work with me to keep me off IV's if I was going out of town...but luckily the colistin helped
Do you feel that your clinic is cutting edge?
---Well, one of the first things they did was get me a Vest. Not tht it is "cutting edge" but I felt like they looked at me, saw I ws doing well, and then looked at what else I could be doing, rather than just staying with my "status quo"

I hope this helps!

Jackie, 26 w/cf

jrotier · Jan 18, 2009

Hi. I'm relatively new to the Forums thing, so I hope I post this right...
 
 I recently relocated to CA as well, back in July and I go to Stanford. I am 26, but am seeing one of the peds docs. When I moved, the adult clinic was in the process of some transitions, so all the adult docs were full. They have recently added a few more adult docs so I'm sure I'll be switching soon. I'll try the best I can to answer your questions..
 
 How aggressive are the doctors with managing your disease?
 ---I'd say farily agressive, I have good FEV's, and I got a bad cold that developed into an exacerbation. They were very quick about getting me on some orals, and when that didn't work, I did colistin. I'm sure the next thing would have been iv's, but I felt they were agressive enough to make sure it did not get to that point.
 How good are the doctors/nurses about getting back to you when there is a problem?
 ---Great! For sick calls, I have always heard back that day. I've never had to use the on-call doc, so I can't speak to that though. Even for non-urgent, I've never waited more than a day.
 How proactive is the team?
 ---Hard to say since I have't been there that long, but they are running all the proactive tests...OGTT test, bone density scan, ect to get baseline readings
 How do you feel the quality of the team is overall?
 ---I've been to 5 different CF centers and I have been the most pleased with this one so far. I feel the staff is very knowledgeble, and listens to me, instead of saying "Good, your're doing fine see you in 3 months."
 How easy is it to get an appointment?
 ---Haven't had any trouble, even for my first appt, the wait was only 2 weeks. When I was sick, I got in the next day my doc was in (I choose to wait for him, they could've gotten me in that day if I had wanted)
 HOw well does the clinic run?
 ---I'd say pretty well, more organized than other's I've been to.
 HOw do you like the hospital?
 ---Haven't done IV's yet, so I can't really say
 Does your clinic do tune ups?
 ---Again, haven't needed IV's, but when I was sick, they asked my plans for the holdiays...made me feel as though they were willing to work with me to keep me off IV's if I was going out of town...but luckily the colistin helped
 Do you feel that your clinic is cutting edge?
 ---Well, one of the first things they did was get me a Vest. Not tht it is "cutting edge" but I felt like they looked at me, saw I ws doing well, and then looked at what else I could be doing, rather than just staying with my "status quo"
 
 I hope this helps!
 
 Jackie, 26 w/cf

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