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cf centers
- Thread starter anonymous
- Start date
naomiangel
New member
My daughter is 18
We go to Children's hospital Central California in Madera
She can remain there until the age of 21.
then we will go to UC Davis in Sacramento.
they do not currently have an adult center in the Fresno area
Kris, mom of Naomi, 18, cf, cfrd
We go to Children's hospital Central California in Madera
She can remain there until the age of 21.
then we will go to UC Davis in Sacramento.
they do not currently have an adult center in the Fresno area
Kris, mom of Naomi, 18, cf, cfrd
damiensmom
New member
Damien goes to Pheniox C.R.S it is a 4 hour drive for us but the only one in Arizona and when he goes to the hospital he goes toPheniox Childrens hospital and it leaves much to be desired and Ihave never in my life been around such insensitive uncompassionate nurses
I go to lij in long island..I live in staten island so its a good hour away but totally worth it...my doctor is amazing...very agressive and the hospital is just as good. I used to go to long island college..downtown brooklyn,old doctor was very nice but not so agressive...plus the hospital being a disgrace...I personally think if I went to lij from the beginning I wouldnt be as sick as I am right now..but o well can't turn back time..kerri 20 years old with cf.cfrd and tons of other problems that I'm just to lazy to type lol
Haileysmommy
New member
We go to Childrens Hospital in Denver. It is like a 2 hours drive, but they come down to the town that is next to us once a month and that is a 45min drive. I love all of the dr's and staff they are wonderful. I believe it is the only accredited center for kids here in CO.
I was reading these message boards the other day , and someone don't know who left a message saying something about that very place your refering to. I hate to hear that people with cf or any debilitating disease have to put up with people who hate there job and in my case people who hate there job and over see most of your hospitlizations and way over paid. lol.. I wish the CF Foundation could help us out when it comes to complaints and such. keep a chin up us cfers will listen to you ..
Bengals fan
Bengals fan
Melissa!!!!
Wow, so you go to St. Vincent's? I've been there a year. I have Walker. I honestly have never had such a sympathetic intelligent doc. I arrived at her office after a string of loser docs, with bad PFT's and a bizzare leg disorder. Within 2 weeks she got my pFT's from 75-30-12, to 88-65-28. And she didn't know what my weird leg sweling was, but she promised she would exhaust every resource till she did. And she stuck to her word. I have been helped so much there. So who do you have?
How long have you been there?
Any bad experiences so far?
Christian
Wow, so you go to St. Vincent's? I've been there a year. I have Walker. I honestly have never had such a sympathetic intelligent doc. I arrived at her office after a string of loser docs, with bad PFT's and a bizzare leg disorder. Within 2 weeks she got my pFT's from 75-30-12, to 88-65-28. And she didn't know what my weird leg sweling was, but she promised she would exhaust every resource till she did. And she stuck to her word. I have been helped so much there. So who do you have?
How long have you been there?
Any bad experiences so far?
Christian
My son who is 20 goes to Childrens Hospital in Birmingham, Al. It is an hour away but the best center closest to us. We see Dr Gutierrez but have recently seen Dr Clancy since he has been in the PTC124 study. We used Dr Brasfield for yrs- she was at St Vincents in private practice-about a block from Childrens. She gave up all her CF patients a couple of yrs ago to cut back and we really miss her. He will go to UAB in June when he turns 21. Another big change. Susan
Kait goes to Childrens Hospital in Columbus Ohio, it is about 45 min. away and the docs and nurses are wonderful, she has been going there since she was diagnosed at birth and will hopefully always go there.
WE LOVE THE DOCS AND NURSES !!!!!!!
kaitsmom<img src="i/expressions/rose.gif" border="0">
WE LOVE THE DOCS AND NURSES !!!!!!!
kaitsmom<img src="i/expressions/rose.gif" border="0">
nickandlivsmom
New member
I go
to St. Vincent's in NYC too! I have Dr. Berdella. I love her!
Hi Melissa and Christian! Melissa, I emailed you back in the summer- hope you are doing well!!!
Christian- I'm happy you found them!! They are GREAT DR.'s!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kerry from SI- did you used to live in Bay Ridge and know the Hanley family on Wakeman place?
Hope everyone is doing well!<img src="i/expressions/face-icon-small-smile.gif" border="0">
to St. Vincent's in NYC too! I have Dr. Berdella. I love her!
Hi Melissa and Christian! Melissa, I emailed you back in the summer- hope you are doing well!!!
Christian- I'm happy you found them!! They are GREAT DR.'s!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kerry from SI- did you used to live in Bay Ridge and know the Hanley family on Wakeman place?
Hope everyone is doing well!<img src="i/expressions/face-icon-small-smile.gif" border="0">
nickandlivsmom
New member
opps....I didn't answer the questions! St. Vincent's was near my house(I used to live in Bay Ridge). It's now about an hour and 1/2 away. I was diagnosed at 18 and picked that center because my best friends aunt was the nurse there. Very happy with it.
I
IG
Guest
Went to: Christus Santa Rosa, was in San Antonio, about an hour from my house. They were the closest and apparently the only ones in the area. After time passed other ones opened in San Antonio (run by my previous doctor) but we stuck with that one since the new doctors were absolutely fantastic.
Now I go to: UPenn. Its in Philadelphia. I see a doctor who treats both my CF and transplant. UPenn is supposedly the best in the business. Plus it's like a 10 minute walk (depending on which office you go to) from my apartment.
Now I go to: UPenn. Its in Philadelphia. I see a doctor who treats both my CF and transplant. UPenn is supposedly the best in the business. Plus it's like a 10 minute walk (depending on which office you go to) from my apartment.
LoveShines4Austin
New member
Austin goes to UC Davis in Sacramento California. He's 17 now so our new doctor here suggested we ask to be seen in the adult clinic next time we travel the 3 hours there and the 3 hours back. Ugh.