CF's in California

Liza

New member
Hi, I just wanted to say that my daughter was followed at Lucille Packard Children's by the adult team after relocating to the Palo Alto area while waiting for a double lung transplant.

We/she received exceptional care from the CF team. They were all extremely wonderful, understanding and caring.

Urgent care was received in a timely manner. Calls were returned within an acceptable amount of time. I'd say within about 2hrs. if not sooner. They'd always let us know that they received the call, if I'd left a detailed message with most of what they needed to know, they'd call to let us know they were working on it/contacting the doc. etc.

I/we found them to be aggressive in their treatment and care.

Since we/my daughter, were there waiting for transplant all our appts. seemed to be of the urgent matter and never did we just have a routine appt. Although we did have regularly scheduled appts.

The RT was wonderful as were the nurses, CF coordinator and clinic staff in general.

Since leaving the CF clinic, I have heard that the adult clinic is now seen in the Stanford chest clinic. I don't know if that is for sure, just what I heard. Since we aren't supposed to name docs. really, I will just say we/my daughter, was followed by Dr. M and he was absolutely wonderful. She had also seen two different peds. CF docs. One female and one male. One thing we really liked about the female doc was (and it was an urgent appt.) that she really listened to Anna and her thoughts on what was going on with her. Too many times a new doc doesn't LISTEN to the patient. The patient many times knows their body alot better than a new doctor and she believed this to be true. The other peds. doc, a male, was great as well. He even checked in on Anna when he heard she was admitted and asked about her after she received her transplant cause he'd heard she got her call.

If we ever moved to the bay area we would certainly go back to Lucille Packard/Stanford CF clinic.
 

Liza

New member
Hi, I just wanted to say that my daughter was followed at Lucille Packard Children's by the adult team after relocating to the Palo Alto area while waiting for a double lung transplant.

We/she received exceptional care from the CF team. They were all extremely wonderful, understanding and caring.

Urgent care was received in a timely manner. Calls were returned within an acceptable amount of time. I'd say within about 2hrs. if not sooner. They'd always let us know that they received the call, if I'd left a detailed message with most of what they needed to know, they'd call to let us know they were working on it/contacting the doc. etc.

I/we found them to be aggressive in their treatment and care.

Since we/my daughter, were there waiting for transplant all our appts. seemed to be of the urgent matter and never did we just have a routine appt. Although we did have regularly scheduled appts.

The RT was wonderful as were the nurses, CF coordinator and clinic staff in general.

Since leaving the CF clinic, I have heard that the adult clinic is now seen in the Stanford chest clinic. I don't know if that is for sure, just what I heard. Since we aren't supposed to name docs. really, I will just say we/my daughter, was followed by Dr. M and he was absolutely wonderful. She had also seen two different peds. CF docs. One female and one male. One thing we really liked about the female doc was (and it was an urgent appt.) that she really listened to Anna and her thoughts on what was going on with her. Too many times a new doc doesn't LISTEN to the patient. The patient many times knows their body alot better than a new doctor and she believed this to be true. The other peds. doc, a male, was great as well. He even checked in on Anna when he heard she was admitted and asked about her after she received her transplant cause he'd heard she got her call.

If we ever moved to the bay area we would certainly go back to Lucille Packard/Stanford CF clinic.
 

Liza

New member
Hi, I just wanted to say that my daughter was followed at Lucille Packard Children's by the adult team after relocating to the Palo Alto area while waiting for a double lung transplant.

We/she received exceptional care from the CF team. They were all extremely wonderful, understanding and caring.

Urgent care was received in a timely manner. Calls were returned within an acceptable amount of time. I'd say within about 2hrs. if not sooner. They'd always let us know that they received the call, if I'd left a detailed message with most of what they needed to know, they'd call to let us know they were working on it/contacting the doc. etc.

I/we found them to be aggressive in their treatment and care.

Since we/my daughter, were there waiting for transplant all our appts. seemed to be of the urgent matter and never did we just have a routine appt. Although we did have regularly scheduled appts.

The RT was wonderful as were the nurses, CF coordinator and clinic staff in general.

Since leaving the CF clinic, I have heard that the adult clinic is now seen in the Stanford chest clinic. I don't know if that is for sure, just what I heard. Since we aren't supposed to name docs. really, I will just say we/my daughter, was followed by Dr. M and he was absolutely wonderful. She had also seen two different peds. CF docs. One female and one male. One thing we really liked about the female doc was (and it was an urgent appt.) that she really listened to Anna and her thoughts on what was going on with her. Too many times a new doc doesn't LISTEN to the patient. The patient many times knows their body alot better than a new doctor and she believed this to be true. The other peds. doc, a male, was great as well. He even checked in on Anna when he heard she was admitted and asked about her after she received her transplant cause he'd heard she got her call.

If we ever moved to the bay area we would certainly go back to Lucille Packard/Stanford CF clinic.
 

Liza

New member
Hi, I just wanted to say that my daughter was followed at Lucille Packard Children's by the adult team after relocating to the Palo Alto area while waiting for a double lung transplant.

We/she received exceptional care from the CF team. They were all extremely wonderful, understanding and caring.

Urgent care was received in a timely manner. Calls were returned within an acceptable amount of time. I'd say within about 2hrs. if not sooner. They'd always let us know that they received the call, if I'd left a detailed message with most of what they needed to know, they'd call to let us know they were working on it/contacting the doc. etc.

I/we found them to be aggressive in their treatment and care.

Since we/my daughter, were there waiting for transplant all our appts. seemed to be of the urgent matter and never did we just have a routine appt. Although we did have regularly scheduled appts.

The RT was wonderful as were the nurses, CF coordinator and clinic staff in general.

Since leaving the CF clinic, I have heard that the adult clinic is now seen in the Stanford chest clinic. I don't know if that is for sure, just what I heard. Since we aren't supposed to name docs. really, I will just say we/my daughter, was followed by Dr. M and he was absolutely wonderful. She had also seen two different peds. CF docs. One female and one male. One thing we really liked about the female doc was (and it was an urgent appt.) that she really listened to Anna and her thoughts on what was going on with her. Too many times a new doc doesn't LISTEN to the patient. The patient many times knows their body alot better than a new doctor and she believed this to be true. The other peds. doc, a male, was great as well. He even checked in on Anna when he heard she was admitted and asked about her after she received her transplant cause he'd heard she got her call.

If we ever moved to the bay area we would certainly go back to Lucille Packard/Stanford CF clinic.
 

Liza

New member
Hi, I just wanted to say that my daughter was followed at Lucille Packard Children's by the adult team after relocating to the Palo Alto area while waiting for a double lung transplant.
<br />
<br />We/she received exceptional care from the CF team. They were all extremely wonderful, understanding and caring.
<br />
<br />Urgent care was received in a timely manner. Calls were returned within an acceptable amount of time. I'd say within about 2hrs. if not sooner. They'd always let us know that they received the call, if I'd left a detailed message with most of what they needed to know, they'd call to let us know they were working on it/contacting the doc. etc.
<br />
<br />I/we found them to be aggressive in their treatment and care.
<br />
<br />Since we/my daughter, were there waiting for transplant all our appts. seemed to be of the urgent matter and never did we just have a routine appt. Although we did have regularly scheduled appts.
<br />
<br />The RT was wonderful as were the nurses, CF coordinator and clinic staff in general.
<br />
<br />Since leaving the CF clinic, I have heard that the adult clinic is now seen in the Stanford chest clinic. I don't know if that is for sure, just what I heard. Since we aren't supposed to name docs. really, I will just say we/my daughter, was followed by Dr. M and he was absolutely wonderful. She had also seen two different peds. CF docs. One female and one male. One thing we really liked about the female doc was (and it was an urgent appt.) that she really listened to Anna and her thoughts on what was going on with her. Too many times a new doc doesn't LISTEN to the patient. The patient many times knows their body alot better than a new doctor and she believed this to be true. The other peds. doc, a male, was great as well. He even checked in on Anna when he heard she was admitted and asked about her after she received her transplant cause he'd heard she got her call.
<br />
<br />If we ever moved to the bay area we would certainly go back to Lucille Packard/Stanford CF clinic.
<br />
<br />
 

my65roses4me

New member
I agree with the previous poster about staying north if you can.
I have been going to the adult center at USC since 1998.The first Dr retired a few years ago.
The Dr is a new Dr with only 5-6 yrs experience with CF and they are very over crowded.

I am unhappy there so I tried San Diego. I like the hospital. It was nice, pretty new and very clean. The Dr however I didn't feel was proactive enough for my taste.

As a result, I will be looking into the northern Dr's soon.
Good luck on your search and please update us on what you find out. I, like you, need more info too.
Thanks
 

my65roses4me

New member
I agree with the previous poster about staying north if you can.
I have been going to the adult center at USC since 1998.The first Dr retired a few years ago.
The Dr is a new Dr with only 5-6 yrs experience with CF and they are very over crowded.

I am unhappy there so I tried San Diego. I like the hospital. It was nice, pretty new and very clean. The Dr however I didn't feel was proactive enough for my taste.

As a result, I will be looking into the northern Dr's soon.
Good luck on your search and please update us on what you find out. I, like you, need more info too.
Thanks
 

my65roses4me

New member
I agree with the previous poster about staying north if you can.
I have been going to the adult center at USC since 1998.The first Dr retired a few years ago.
The Dr is a new Dr with only 5-6 yrs experience with CF and they are very over crowded.

I am unhappy there so I tried San Diego. I like the hospital. It was nice, pretty new and very clean. The Dr however I didn't feel was proactive enough for my taste.

As a result, I will be looking into the northern Dr's soon.
Good luck on your search and please update us on what you find out. I, like you, need more info too.
Thanks
 

my65roses4me

New member
I agree with the previous poster about staying north if you can.
I have been going to the adult center at USC since 1998.The first Dr retired a few years ago.
The Dr is a new Dr with only 5-6 yrs experience with CF and they are very over crowded.

I am unhappy there so I tried San Diego. I like the hospital. It was nice, pretty new and very clean. The Dr however I didn't feel was proactive enough for my taste.

As a result, I will be looking into the northern Dr's soon.
Good luck on your search and please update us on what you find out. I, like you, need more info too.
Thanks
 

my65roses4me

New member
I agree with the previous poster about staying north if you can.
<br />I have been going to the adult center at USC since 1998.The first Dr retired a few years ago.
<br />The Dr is a new Dr with only 5-6 yrs experience with CF and they are very over crowded.
<br />
<br />I am unhappy there so I tried San Diego. I like the hospital. It was nice, pretty new and very clean. The Dr however I didn't feel was proactive enough for my taste.
<br />
<br />As a result, I will be looking into the northern Dr's soon.
<br />Good luck on your search and please update us on what you find out. I, like you, need more info too.
<br />Thanks
 

cfbigbrother

New member
It sounds like adult care in California, especially southern California is an issue. I am still wondering about the pediatric care.
 

cfbigbrother

New member
It sounds like adult care in California, especially southern California is an issue. I am still wondering about the pediatric care.
 

cfbigbrother

New member
It sounds like adult care in California, especially southern California is an issue. I am still wondering about the pediatric care.
 

cfbigbrother

New member
It sounds like adult care in California, especially southern California is an issue. I am still wondering about the pediatric care.
 

cfbigbrother

New member
It sounds like adult care in California, especially southern California is an issue. I am still wondering about the pediatric care.
 

MicheleGazelle

New member
We were in northern california when my son and were diagnosed. We went once to San Francisco for a sweat chloride but got all other testing and care at UC-Davis Medical Center in Sacramento. I liked the adult care (for me) a lot more than I liked the pediatric care (for my son), but they each had strengths and weaknesses. My doctor was a lot more knowledgeable. For example, he prescribed pancrecarb for me, and I had my son try my enzymes and then we went to his appointment and asked to have him switched and the pediatric clinic hadn't heard of it. On the other hand, the pediatric clinic seemed more aggressive and pro-active. They prescribed my son enzymes first and my own doctor had never even brought that up. So I had to go ask for a prescription for me, but then I got better enzymes. Go figure.

The adult clinic was also cleaner. We both always ended up sick after taking my son to clinic. The adult clinic had trash cans where you stepped on a peddle to open them instead of having to touch the lid and other safer practices like that. It's been a few years since we were there, so things may have changed. I'm tossing that out in part as food for thought for what you might want to look at.

Last, I will note that if I were in your position and had some kind of choice, I would avoid going into the LA basin due to the smog. You can do some comparing of pollution using this site: <a target=_blank class=ftalternatingbarlinklarge href="http://scorecard.org/">http://scorecard.org/</a>

Good luck with this.
 

MicheleGazelle

New member
We were in northern california when my son and were diagnosed. We went once to San Francisco for a sweat chloride but got all other testing and care at UC-Davis Medical Center in Sacramento. I liked the adult care (for me) a lot more than I liked the pediatric care (for my son), but they each had strengths and weaknesses. My doctor was a lot more knowledgeable. For example, he prescribed pancrecarb for me, and I had my son try my enzymes and then we went to his appointment and asked to have him switched and the pediatric clinic hadn't heard of it. On the other hand, the pediatric clinic seemed more aggressive and pro-active. They prescribed my son enzymes first and my own doctor had never even brought that up. So I had to go ask for a prescription for me, but then I got better enzymes. Go figure.

The adult clinic was also cleaner. We both always ended up sick after taking my son to clinic. The adult clinic had trash cans where you stepped on a peddle to open them instead of having to touch the lid and other safer practices like that. It's been a few years since we were there, so things may have changed. I'm tossing that out in part as food for thought for what you might want to look at.

Last, I will note that if I were in your position and had some kind of choice, I would avoid going into the LA basin due to the smog. You can do some comparing of pollution using this site: <a target=_blank class=ftalternatingbarlinklarge href="http://scorecard.org/">http://scorecard.org/</a>

Good luck with this.
 

MicheleGazelle

New member
We were in northern california when my son and were diagnosed. We went once to San Francisco for a sweat chloride but got all other testing and care at UC-Davis Medical Center in Sacramento. I liked the adult care (for me) a lot more than I liked the pediatric care (for my son), but they each had strengths and weaknesses. My doctor was a lot more knowledgeable. For example, he prescribed pancrecarb for me, and I had my son try my enzymes and then we went to his appointment and asked to have him switched and the pediatric clinic hadn't heard of it. On the other hand, the pediatric clinic seemed more aggressive and pro-active. They prescribed my son enzymes first and my own doctor had never even brought that up. So I had to go ask for a prescription for me, but then I got better enzymes. Go figure.

The adult clinic was also cleaner. We both always ended up sick after taking my son to clinic. The adult clinic had trash cans where you stepped on a peddle to open them instead of having to touch the lid and other safer practices like that. It's been a few years since we were there, so things may have changed. I'm tossing that out in part as food for thought for what you might want to look at.

Last, I will note that if I were in your position and had some kind of choice, I would avoid going into the LA basin due to the smog. You can do some comparing of pollution using this site: <a target=_blank class=ftalternatingbarlinklarge href="http://scorecard.org/">http://scorecard.org/</a>

Good luck with this.
 

MicheleGazelle

New member
We were in northern california when my son and were diagnosed. We went once to San Francisco for a sweat chloride but got all other testing and care at UC-Davis Medical Center in Sacramento. I liked the adult care (for me) a lot more than I liked the pediatric care (for my son), but they each had strengths and weaknesses. My doctor was a lot more knowledgeable. For example, he prescribed pancrecarb for me, and I had my son try my enzymes and then we went to his appointment and asked to have him switched and the pediatric clinic hadn't heard of it. On the other hand, the pediatric clinic seemed more aggressive and pro-active. They prescribed my son enzymes first and my own doctor had never even brought that up. So I had to go ask for a prescription for me, but then I got better enzymes. Go figure.

The adult clinic was also cleaner. We both always ended up sick after taking my son to clinic. The adult clinic had trash cans where you stepped on a peddle to open them instead of having to touch the lid and other safer practices like that. It's been a few years since we were there, so things may have changed. I'm tossing that out in part as food for thought for what you might want to look at.

Last, I will note that if I were in your position and had some kind of choice, I would avoid going into the LA basin due to the smog. You can do some comparing of pollution using this site: <a target=_blank class=ftalternatingbarlinklarge href="http://scorecard.org/">http://scorecard.org/</a>

Good luck with this.
 

MicheleGazelle

New member
We were in northern california when my son and were diagnosed. We went once to San Francisco for a sweat chloride but got all other testing and care at UC-Davis Medical Center in Sacramento. I liked the adult care (for me) a lot more than I liked the pediatric care (for my son), but they each had strengths and weaknesses. My doctor was a lot more knowledgeable. For example, he prescribed pancrecarb for me, and I had my son try my enzymes and then we went to his appointment and asked to have him switched and the pediatric clinic hadn't heard of it. On the other hand, the pediatric clinic seemed more aggressive and pro-active. They prescribed my son enzymes first and my own doctor had never even brought that up. So I had to go ask for a prescription for me, but then I got better enzymes. Go figure.
<br />
<br />The adult clinic was also cleaner. We both always ended up sick after taking my son to clinic. The adult clinic had trash cans where you stepped on a peddle to open them instead of having to touch the lid and other safer practices like that. It's been a few years since we were there, so things may have changed. I'm tossing that out in part as food for thought for what you might want to look at.
<br />
<br />Last, I will note that if I were in your position and had some kind of choice, I would avoid going into the LA basin due to the smog. You can do some comparing of pollution using this site: <a target=_blank class=ftalternatingbarlinklarge href="http://scorecard.org/">http://scorecard.org/</a>
<br />
<br />Good luck with this.
 
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