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Moving to Phoenix, how are the CF Doctors there?
- Thread starter anonymous
- Start date
I used to go to them before moving to jersey.
Be warned, the hospital is shitty, and has a 2 inch tv with no channles, and bad food.
The doctors on the other hand are good, and you can do home cleanouts mostly there with the health insurance companys out there instead.
*edit*
I'll add more on how it was for me when I lived there for you once I can.
OH, I almost forgot, crucial!!!
IF you see an ENT, MAKE SURE you get Doctor Rains!!! (or was it reins... damit!)
That guy is the best ENT I've seen outta 4 states.
*edit #2*
Ok. time now. <img src="i/expressions/face-icon-small-smile.gif" border="0">
The system out there is nice.
The hospital and doctor that I went to was in phoenix, next to the childrens hospital.
For the most part, they like you to do home cleanouts there (which can be nice), and attempt to keep things in a concentrated area (no running to 3 diffrent towns to get your cultures to diffrent places).
The doctors know their stuff, and are very friendly and helpfull.
The hospitals can be kinda rough, but the IV teams know their stuff there.
In AZ, it seemed to be mostly about choice.
My doctor in NJ here will reem me all the time, and we'll have screaming matches over what he wants me to do, and what I am doing and can do.
They'll work with you alot more there.
A few side notes to you on living in Arizona:
- Drink alot of water/soda/juice to stay hydrated. Espically when you're sick.
- Try to keep your nose clear best you can. There are desert spores out there that can harm your sinus's severly (happened to me).
- Try to keep your lungs clear, even when they feel clear.
The weather out there is so dry and comfortable to breath, that your lungs will feel good regardless of the shape they're in (I had 45% lung damage well out there, and I still felt like a perfectly normal person due to the air quality).
Don't let it fool you. You need to keep up on your clearence best you can still.
It's also alot easier to do there, because bike riding, roller blading, etc, are nice to do. Along with swimming!
Also, on the food side... Rosaties pizza, large thin crusts are awesome.
Then there's Jasons Deli. Almost everything they make is great, except for one exceptional item.
PASTRAMI!
That's right. Pastrami sub, with mustard and melted swiss on it. Oh my god, so good.
You can't even freaking get pastrami in jersey/philly!! So unfair ; ;
Then there's Arbys and Jack in the Box. Also great food choices that are very common around the areas of AZ.
-----------------------------------------------------------------------------------------------
Anyways, best of luck to you out there. I loved arizona with a passion, and wish I could live there again some day. (east coast blows!!!!!!)
Enjoy it well you have it!!!!
Be warned, the hospital is shitty, and has a 2 inch tv with no channles, and bad food.
The doctors on the other hand are good, and you can do home cleanouts mostly there with the health insurance companys out there instead.
*edit*
I'll add more on how it was for me when I lived there for you once I can.
OH, I almost forgot, crucial!!!
IF you see an ENT, MAKE SURE you get Doctor Rains!!! (or was it reins... damit!)
That guy is the best ENT I've seen outta 4 states.
*edit #2*
Ok. time now. <img src="i/expressions/face-icon-small-smile.gif" border="0">
The system out there is nice.
The hospital and doctor that I went to was in phoenix, next to the childrens hospital.
For the most part, they like you to do home cleanouts there (which can be nice), and attempt to keep things in a concentrated area (no running to 3 diffrent towns to get your cultures to diffrent places).
The doctors know their stuff, and are very friendly and helpfull.
The hospitals can be kinda rough, but the IV teams know their stuff there.
In AZ, it seemed to be mostly about choice.
My doctor in NJ here will reem me all the time, and we'll have screaming matches over what he wants me to do, and what I am doing and can do.
They'll work with you alot more there.
A few side notes to you on living in Arizona:
- Drink alot of water/soda/juice to stay hydrated. Espically when you're sick.
- Try to keep your nose clear best you can. There are desert spores out there that can harm your sinus's severly (happened to me).
- Try to keep your lungs clear, even when they feel clear.
The weather out there is so dry and comfortable to breath, that your lungs will feel good regardless of the shape they're in (I had 45% lung damage well out there, and I still felt like a perfectly normal person due to the air quality).
Don't let it fool you. You need to keep up on your clearence best you can still.
It's also alot easier to do there, because bike riding, roller blading, etc, are nice to do. Along with swimming!
Also, on the food side... Rosaties pizza, large thin crusts are awesome.
Then there's Jasons Deli. Almost everything they make is great, except for one exceptional item.
PASTRAMI!
That's right. Pastrami sub, with mustard and melted swiss on it. Oh my god, so good.
You can't even freaking get pastrami in jersey/philly!! So unfair ; ;
Then there's Arbys and Jack in the Box. Also great food choices that are very common around the areas of AZ.
-----------------------------------------------------------------------------------------------
Anyways, best of luck to you out there. I loved arizona with a passion, and wish I could live there again some day. (east coast blows!!!!!!)
Enjoy it well you have it!!!!
I have lived in Phoenix for 30 years, having moved from Michigan. I've had awesome care. There are several great docs. There is a CF center in the new Phoenix Children's Hospital, and they also see adults. I don't receive my care there - I prefer my pulmonologist. He has consulted with the PCH docs about me on occasion. Protocol at the Banner system hospitals (they operate many in the Phoenix area) is private rooms for CFers and masks and gowns for all who enter the rooms. Can't speak to the other hospitals.
I second the advice given earlier. Lots of water. The dry heat helps, but I always have a bit of a struggle adjusting to when it switches from mild to hot weather (May/June) or hot to mild (Nov/Dec). Many people who move here eventually develop allergies because so many people have transplanted non-native trees and other vegatation to their desert homes. Also, the pollution can get really bad in late August and December - just take care. You will love, love, love all the sunny days. I feel like I am on a perpetual vacation here.
Debi
54 w/df
I second the advice given earlier. Lots of water. The dry heat helps, but I always have a bit of a struggle adjusting to when it switches from mild to hot weather (May/June) or hot to mild (Nov/Dec). Many people who move here eventually develop allergies because so many people have transplanted non-native trees and other vegatation to their desert homes. Also, the pollution can get really bad in late August and December - just take care. You will love, love, love all the sunny days. I feel like I am on a perpetual vacation here.
Debi
54 w/df
damiensmom
New member
I live in bullhead and drive my son to pheniox the clinic is at st joesphs next to phenioxs childrens hospital i agree the hospital sucks but the cf center is great and there is lots to do there is one other credited cf center in tuscon ! hour away from pheniox
damiensmom
New member
I live in bullhead and drive my son to pheniox the clinic is at st joesphs next to phenioxs childrens hospital i agree the hospital sucks but the cf center is great and there is lots to do there is one other credited cf center in tuscon ! hour away from pheniox
That stinks. I don't like home IVs. I feel most doctors who push home IVs aren't aggressive enough about addressing exaserbations.
And you all say the Adult CF hospital stinks? Well, I guess I am going to have to stick to my doctors in California. That really sucks, insofar as when I go in, my wife can't visit me. I was hoping the docs in AZ were going to be good. Too bad.
Thanks for your support. I am grateful I learn all this on the boards than by a cruddy experience.
Best,
Grendel
And you all say the Adult CF hospital stinks? Well, I guess I am going to have to stick to my doctors in California. That really sucks, insofar as when I go in, my wife can't visit me. I was hoping the docs in AZ were going to be good. Too bad.
Thanks for your support. I am grateful I learn all this on the boards than by a cruddy experience.
Best,
Grendel
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
That stinks. I don't like home IVs. I feel most doctors who push home IVs aren't aggressive enough about addressing exaserbations.
And you all say the Adult CF hospital stinks? Well, I guess I am going to have to stick to my doctors in California. That really sucks, insofar as when I go in, my wife can't visit me. I was hoping the docs in AZ were going to be good. Too bad.
Thanks for your support. I am grateful I learn all this on the boards than by a cruddy experience.
Best,
Grendel</end quote></div>
That stinks. I don't like home IVs. I feel most doctors who push home IVs aren't aggressive enough about addressing exaserbations.
And you all say the Adult CF hospital stinks? Well, I guess I am going to have to stick to my doctors in California. That really sucks, insofar as when I go in, my wife can't visit me. I was hoping the docs in AZ were going to be good. Too bad.
Thanks for your support. I am grateful I learn all this on the boards than by a cruddy experience.
Best,
Grendel</end quote></div>
Sorry, I haven't figured out how to use the quote feature. I don't understand why you have reached the conclusion that all the hospitals are bad. I said I didn't like the adult docI met at the children's CF center. Understand that the new, freestanding Phoenix Children's is designed to accommodate kids - it's not really set up for adults. And the adult doc is considered to be quite good. I just didn't like his bedside manner, and I already have an amazing pulmonologist who goes way beyond the call of duty to take care of me and completely respects my knowledge about my health. There are many extremely great docs here. I have received outstanding care at Banner Good Samaritan. So, I think you can find excellent care here without feeling that California is your only option.
Just wanted to give you another perspective.
Just wanted to give you another perspective.
Debbi,
If you don't use the Adult CF docs, whom do you use for care? In my experience, general pulmonologist just are not usually in-the-know with the latest care/treatments. But you say that Banner Good Samaritan is a good hospital? Is that where they send the adult cfers for hospital care? And how would you define good care? The other commenter seemed to think that the adult hospital for CFers wasn't that strong.
Thanks
Grendel
If you don't use the Adult CF docs, whom do you use for care? In my experience, general pulmonologist just are not usually in-the-know with the latest care/treatments. But you say that Banner Good Samaritan is a good hospital? Is that where they send the adult cfers for hospital care? And how would you define good care? The other commenter seemed to think that the adult hospital for CFers wasn't that strong.
Thanks
Grendel
I've been here for 10 years. I can't stand the 'adult' cf clinic at Phoenix Children's. Isn't it about time they figure out that people with CF actually become adults. For 10 years, I got all of my correspondence from their CF clinic addressed 'To the Parent's of: ' Cheezes man, I'm almost 50 years old! I'm older than most of the doctor's there, guess that doesn't suit them well.
I finally got a family physician who is willing to work with me. I have not been hospitalized for 15 years, so not sure what would happen if that occurs.
Hate hospitals, hate clinics, hate doctor's offices. Necessary evils in life. I always 'feel' sicker after I leave a doctor's office. Is that mental, or what?
Any of the Phoenix people know the young woman from phoenix with CF that was training to be a nurse? I met her at one of my clinic appointments about 5 years ago.
I finally got a family physician who is willing to work with me. I have not been hospitalized for 15 years, so not sure what would happen if that occurs.
Hate hospitals, hate clinics, hate doctor's offices. Necessary evils in life. I always 'feel' sicker after I leave a doctor's office. Is that mental, or what?
Any of the Phoenix people know the young woman from phoenix with CF that was training to be a nurse? I met her at one of my clinic appointments about 5 years ago.
I've been here for 10 years. I can't stand the 'adult' cf clinic at Phoenix Children's. Isn't it about time they figure out that people with CF actually become adults. For 10 years, I got all of my correspondence from their CF clinic addressed 'To the Parent's of: ' Cheezes man, I'm almost 50 years old! I'm older than most of the doctor's there, guess that doesn't suit them well.
I finally got a family physician who is willing to work with me. I have not been hospitalized for 15 years, so not sure what would happen if that occurs.
Hate hospitals, hate clinics, hate doctor's offices. Necessary evils in life. I always 'feel' sicker after I leave a doctor's office. Is that mental, or what?
Any of the Phoenix people know the young woman from phoenix with CF that was training to be a nurse? I met her at one of my clinic appointments about 5 years ago.
I finally got a family physician who is willing to work with me. I have not been hospitalized for 15 years, so not sure what would happen if that occurs.
Hate hospitals, hate clinics, hate doctor's offices. Necessary evils in life. I always 'feel' sicker after I leave a doctor's office. Is that mental, or what?
Any of the Phoenix people know the young woman from phoenix with CF that was training to be a nurse? I met her at one of my clinic appointments about 5 years ago.
I've been here for 10 years. I can't stand the 'adult' cf clinic at Phoenix Children's. Isn't it about time they figure out that people with CF actually become adults. For 10 years, I got all of my correspondence from their CF clinic addressed 'To the Parent's of: ' Cheezes man, I'm almost 50 years old! I'm older than most of the doctor's there, guess that doesn't suit them well.
I finally got a family physician who is willing to work with me. I have not been hospitalized for 15 years, so not sure what would happen if that occurs.
Hate hospitals, hate clinics, hate doctor's offices. Necessary evils in life. I always 'feel' sicker after I leave a doctor's office. Is that mental, or what?
Any of the Phoenix people know the young woman from phoenix with CF that was training to be a nurse? I met her at one of my clinic appointments about 5 years ago.
I finally got a family physician who is willing to work with me. I have not been hospitalized for 15 years, so not sure what would happen if that occurs.
Hate hospitals, hate clinics, hate doctor's offices. Necessary evils in life. I always 'feel' sicker after I leave a doctor's office. Is that mental, or what?
Any of the Phoenix people know the young woman from phoenix with CF that was training to be a nurse? I met her at one of my clinic appointments about 5 years ago.
<div class="FTQUOTE"><begin quote>If you don't use the Adult CF docs, whom do you use for care? In my experience, general pulmonologist just are not usually in-the-know with the latest care/treatments.</end quote></div>
I can't speak to Phoenix, but I can speak to this in general. The best care Ry ever had came from a general pulmonologist. Ry hated the clinic, was sick of driving so far for care he hated, and was sick of being treated like CFer #864568. So he talked to pulmonologists in our town about how they felt about taking him on. The guy he ended up going to agreed that, if the two of them worked together, the could offer Ry well rounded care. And they did. Ry reasearched things, his doctor did, they came together with new ideas. In Ry's case, it demanded that he be a little 'in the know' about treatments as well. But Ry's doctor was willing to listen to Ry, versus giving him the "common Cf treatment". Ry's health was more stable than it had ever been in his life, up to catching cepacia. And when he caught that, his doctor called a long list of CF clinics trying to help Ry, even had Ry consult at National Jewish in Denver. It was the cepacia that got him, not the level of care. Hope this helps at all.
I can't speak to Phoenix, but I can speak to this in general. The best care Ry ever had came from a general pulmonologist. Ry hated the clinic, was sick of driving so far for care he hated, and was sick of being treated like CFer #864568. So he talked to pulmonologists in our town about how they felt about taking him on. The guy he ended up going to agreed that, if the two of them worked together, the could offer Ry well rounded care. And they did. Ry reasearched things, his doctor did, they came together with new ideas. In Ry's case, it demanded that he be a little 'in the know' about treatments as well. But Ry's doctor was willing to listen to Ry, versus giving him the "common Cf treatment". Ry's health was more stable than it had ever been in his life, up to catching cepacia. And when he caught that, his doctor called a long list of CF clinics trying to help Ry, even had Ry consult at National Jewish in Denver. It was the cepacia that got him, not the level of care. Hope this helps at all.
<div class="FTQUOTE"><begin quote>If you don't use the Adult CF docs, whom do you use for care? In my experience, general pulmonologist just are not usually in-the-know with the latest care/treatments.</end quote></div>
I can't speak to Phoenix, but I can speak to this in general. The best care Ry ever had came from a general pulmonologist. Ry hated the clinic, was sick of driving so far for care he hated, and was sick of being treated like CFer #864568. So he talked to pulmonologists in our town about how they felt about taking him on. The guy he ended up going to agreed that, if the two of them worked together, the could offer Ry well rounded care. And they did. Ry reasearched things, his doctor did, they came together with new ideas. In Ry's case, it demanded that he be a little 'in the know' about treatments as well. But Ry's doctor was willing to listen to Ry, versus giving him the "common Cf treatment". Ry's health was more stable than it had ever been in his life, up to catching cepacia. And when he caught that, his doctor called a long list of CF clinics trying to help Ry, even had Ry consult at National Jewish in Denver. It was the cepacia that got him, not the level of care. Hope this helps at all.
I can't speak to Phoenix, but I can speak to this in general. The best care Ry ever had came from a general pulmonologist. Ry hated the clinic, was sick of driving so far for care he hated, and was sick of being treated like CFer #864568. So he talked to pulmonologists in our town about how they felt about taking him on. The guy he ended up going to agreed that, if the two of them worked together, the could offer Ry well rounded care. And they did. Ry reasearched things, his doctor did, they came together with new ideas. In Ry's case, it demanded that he be a little 'in the know' about treatments as well. But Ry's doctor was willing to listen to Ry, versus giving him the "common Cf treatment". Ry's health was more stable than it had ever been in his life, up to catching cepacia. And when he caught that, his doctor called a long list of CF clinics trying to help Ry, even had Ry consult at National Jewish in Denver. It was the cepacia that got him, not the level of care. Hope this helps at all.
<div class="FTQUOTE"><begin quote>If you don't use the Adult CF docs, whom do you use for care? In my experience, general pulmonologist just are not usually in-the-know with the latest care/treatments.</end quote></div>
I can't speak to Phoenix, but I can speak to this in general. The best care Ry ever had came from a general pulmonologist. Ry hated the clinic, was sick of driving so far for care he hated, and was sick of being treated like CFer #864568. So he talked to pulmonologists in our town about how they felt about taking him on. The guy he ended up going to agreed that, if the two of them worked together, the could offer Ry well rounded care. And they did. Ry reasearched things, his doctor did, they came together with new ideas. In Ry's case, it demanded that he be a little 'in the know' about treatments as well. But Ry's doctor was willing to listen to Ry, versus giving him the "common Cf treatment". Ry's health was more stable than it had ever been in his life, up to catching cepacia. And when he caught that, his doctor called a long list of CF clinics trying to help Ry, even had Ry consult at National Jewish in Denver. It was the cepacia that got him, not the level of care. Hope this helps at all.
I can't speak to Phoenix, but I can speak to this in general. The best care Ry ever had came from a general pulmonologist. Ry hated the clinic, was sick of driving so far for care he hated, and was sick of being treated like CFer #864568. So he talked to pulmonologists in our town about how they felt about taking him on. The guy he ended up going to agreed that, if the two of them worked together, the could offer Ry well rounded care. And they did. Ry reasearched things, his doctor did, they came together with new ideas. In Ry's case, it demanded that he be a little 'in the know' about treatments as well. But Ry's doctor was willing to listen to Ry, versus giving him the "common Cf treatment". Ry's health was more stable than it had ever been in his life, up to catching cepacia. And when he caught that, his doctor called a long list of CF clinics trying to help Ry, even had Ry consult at National Jewish in Denver. It was the cepacia that got him, not the level of care. Hope this helps at all.
ok-to add my two cents worth! I have lived in the Phx area for 6+ years. I go to the adult clinic at Phx Children's and have a great adult CF doc there. I have also had several week long stints at Banner Good Sam as well as St. Joe's. Was an ok experience-not like resort living-but what hospital is! I also have a great ENT doc-so if you need one just holler. I realize that each person's experience can vary greatly, but I am very confident in the care that I am currently receiving.
ok-to add my two cents worth! I have lived in the Phx area for 6+ years. I go to the adult clinic at Phx Children's and have a great adult CF doc there. I have also had several week long stints at Banner Good Sam as well as St. Joe's. Was an ok experience-not like resort living-but what hospital is! I also have a great ENT doc-so if you need one just holler. I realize that each person's experience can vary greatly, but I am very confident in the care that I am currently receiving.
ok-to add my two cents worth! I have lived in the Phx area for 6+ years. I go to the adult clinic at Phx Children's and have a great adult CF doc there. I have also had several week long stints at Banner Good Sam as well as St. Joe's. Was an ok experience-not like resort living-but what hospital is! I also have a great ENT doc-so if you need one just holler. I realize that each person's experience can vary greatly, but I am very confident in the care that I am currently receiving.