We are considering moving to Phoenix, AZ to be closer to my brother and his wife for support. Can anyone tell me anything about the CF center(s) and CF doctors in Phoenix? Do they listen to what you say? Are they up to date on the latest treatments, participate in drug studies? Are they supportive with disability claims? Do they attend the national CF conference? Do they support home IV maintenance or in-patient? Please sure any other info/feelings, too.
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CF center(s) in Phoenix, AZ
- Thread starter Jeana
- Start date
We are considering moving to Phoenix, AZ to be closer to my brother and his wife for support. Can anyone tell me anything about the CF center(s) and CF doctors in Phoenix? Do they listen to what you say? Are they up to date on the latest treatments, participate in drug studies? Are they supportive with disability claims? Do they attend the national CF conference? Do they support home IV maintenance or in-patient? Please sure any other info/feelings, too.
ehtansky21
New member
Okay Jeana, I will answer what I can???
We live in Hawaii now, but we are from AZ and my boys 4 and 7 are still followed at Phoenix Children's Hospital. I believe Dr. Gong is working in the adult center and that is who we see when there.
He is a very nice guy. Most often very down to business. They go to the CF conferences, so they know a lot of the stuff going on in the CF world.
He more tolerates me, then listens to me. BUT, we try like mad to go the natural route before following genereal CF guidelines, so I think that frustrates him a bit <img src="i/expressions/face-icon-small-smile.gif" border="0">
I am not sure where you live now, but I would definitely consider the change in the weather compared to where you are now. The heat really gets to the boys, but we have recently tried salt pills and they work great. It is a dry heat and I can really tell when the boys are sick, that there mucus is a lot thicker. Here in Hawaii, even though we are a ways away from the beach, there mucus is really thin and flows out well, even when sick.
Ask away if you have anymore questions!!!
blessings,
missa
We live in Hawaii now, but we are from AZ and my boys 4 and 7 are still followed at Phoenix Children's Hospital. I believe Dr. Gong is working in the adult center and that is who we see when there.
He is a very nice guy. Most often very down to business. They go to the CF conferences, so they know a lot of the stuff going on in the CF world.
He more tolerates me, then listens to me. BUT, we try like mad to go the natural route before following genereal CF guidelines, so I think that frustrates him a bit <img src="i/expressions/face-icon-small-smile.gif" border="0">
I am not sure where you live now, but I would definitely consider the change in the weather compared to where you are now. The heat really gets to the boys, but we have recently tried salt pills and they work great. It is a dry heat and I can really tell when the boys are sick, that there mucus is a lot thicker. Here in Hawaii, even though we are a ways away from the beach, there mucus is really thin and flows out well, even when sick.
Ask away if you have anymore questions!!!
blessings,
missa
ehtansky21
New member
Okay Jeana, I will answer what I can???
We live in Hawaii now, but we are from AZ and my boys 4 and 7 are still followed at Phoenix Children's Hospital. I believe Dr. Gong is working in the adult center and that is who we see when there.
He is a very nice guy. Most often very down to business. They go to the CF conferences, so they know a lot of the stuff going on in the CF world.
He more tolerates me, then listens to me. BUT, we try like mad to go the natural route before following genereal CF guidelines, so I think that frustrates him a bit <img src="i/expressions/face-icon-small-smile.gif" border="0">
I am not sure where you live now, but I would definitely consider the change in the weather compared to where you are now. The heat really gets to the boys, but we have recently tried salt pills and they work great. It is a dry heat and I can really tell when the boys are sick, that there mucus is a lot thicker. Here in Hawaii, even though we are a ways away from the beach, there mucus is really thin and flows out well, even when sick.
Ask away if you have anymore questions!!!
blessings,
missa
We live in Hawaii now, but we are from AZ and my boys 4 and 7 are still followed at Phoenix Children's Hospital. I believe Dr. Gong is working in the adult center and that is who we see when there.
He is a very nice guy. Most often very down to business. They go to the CF conferences, so they know a lot of the stuff going on in the CF world.
He more tolerates me, then listens to me. BUT, we try like mad to go the natural route before following genereal CF guidelines, so I think that frustrates him a bit <img src="i/expressions/face-icon-small-smile.gif" border="0">
I am not sure where you live now, but I would definitely consider the change in the weather compared to where you are now. The heat really gets to the boys, but we have recently tried salt pills and they work great. It is a dry heat and I can really tell when the boys are sick, that there mucus is a lot thicker. Here in Hawaii, even though we are a ways away from the beach, there mucus is really thin and flows out well, even when sick.
Ask away if you have anymore questions!!!
blessings,
missa
Maybe someone can chime in who goes there. I did research a year back when we were considering moving to Phoenix and a couple people that I talked to that went there did not have good things to say and preferred Tucson's center. Problem. Tucson does not accept new adults although maybe that has changed. Your kids might be able to go to Tucson's center? Granted I only talked to a couple of people and I am SURE there are people who attend the center and like it. I have attended centers that I liked and some other people have not.... Try cysticlife.org site too. The head of it lives in AZ and is familiar with AZ center and Tucson center. Might have better repsonse about Phx center on that site too! Good luck!
Maybe someone can chime in who goes there. I did research a year back when we were considering moving to Phoenix and a couple people that I talked to that went there did not have good things to say and preferred Tucson's center. Problem. Tucson does not accept new adults although maybe that has changed. Your kids might be able to go to Tucson's center? Granted I only talked to a couple of people and I am SURE there are people who attend the center and like it. I have attended centers that I liked and some other people have not.... Try cysticlife.org site too. The head of it lives in AZ and is familiar with AZ center and Tucson center. Might have better repsonse about Phx center on that site too! Good luck!