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Best treatment centers?

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Cystic Fibrosis
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Posted 4/26/2004 3:56 AM (GMT 0)
Hi.  I live in Houston, with my family that includes our two children who have CF.  The air here is horrible and the care at Texas Children's has not be very agressive.  My son has ABPA troubles very often.  We are thinking about relocating to an area with a good CF treatment center.  We have seen alot about Chapel Hill, NC on the web.  Anyone have any experience with UNC or anywhere else that has a great CF treatment center?  Any help would be very appreciated.

thanks

Posted 4/27/2004 3:30 AM (GMT 0)
Hello,

I was diagnosed wcf in Chapel Hill when they were first starting the genetic testing.  I was 38 then and 51 now.  I can't speak directly about the peds cf center, but I lived in the area for about 20 years and it is quite beautiful and has a very high quality of living.  I am now in Houston myself, but I am seen at the adult center associated with Baylor at The Methodist.  There is another peds cf clinic at The University of Texas Outpatient Peds dept at Hermann.  They may not be a certified center, but it is smaller than TCH.  I work for a company that provides products to the cf hospitals, and although it is quite large, the center at TCH is very good.  Maybe you need to have a good talk with your doctor there.  If you don't get a good feeling about the conversation, it may be time for a new doc.  Anyway, I have also worked professionally with the people at UNC and they are terrific.  However, it too is a large center so simply be aware of that.  Maybe someone else can speak more directly about the care there, but as for the area, it is super.  Just a couple of hours to the beach and a couple to the mountains too.  Try the group at msn called "cysticfibrosis2chat" for a greater response.  Go to MSN, scoll down to groups, then choose support, heart and lungs, then cysticfibrosis2chat.  It is a great group and larger than here.  Good luck.

BoeJaker 51 wcf

Posted 4/28/2004 8:54 PM (GMT 0)
Wow!  It's good to hear from someone who has experienced both sites in question.  Would the climate/air quality in NC be better for the kids than Houston?  Since the CF Center is so big at UNC, would it be hard to get aggressive/personal care?  Maybe we'll check out the center at herman.  We have been here for 6 years, with few good experiences.  I joined up with the msn group, but I'm waiting on approval to enter.  Thanks, alot.
Posted 4/29/2004 2:59 AM (GMT 0)

Hi again,

The air quality in NC or the Chapel Hill area is much better than Houston!  The Raleigh-Durham area is a growing, dynamic area but the people put a lot of emphasis on quality of life.  Although UNC has a large clinic, I believe the quality of care is excellent.  However, I also believe that in any institution it is up to the patient/parents to have an excellent channel of communictions and mutual understanding of "expectations" with their physician to ensure the quality of care.  Good luck.

BoeJaker 51 wcf

Posted 5/17/2004 2:54 AM (GMT 0)
You may look up all CF Centers through the Cystic Fibrosis Foundation- they are all rated throughout the country due to the results of the patients they treat.

We use the CF Center in Minneapolis, MN through Minneapolis Children's Center. They have a great team of CF specialists to help through the entire process. We have seen all the specialists through this center- the dietician, respiratory specialist, physical therapist, social worker, pulmonologist, gastro, ENT, etc...

I speak personally to someone from our CF Center almost a couple times a month. They follow up with everything and I either speak to my daughter's doctor or Nurse Practitioner when I call or they call me back within an hour or two.

They are a very caring team that really wants healthy CF kids. Our CF team/center is rated among the top ten in the Country through the CF Foundation.

Feel free to email me, etc. with any questions. [email protected]
Posted 6/14/2004 2:34 AM (GMT 0)
I live in Arizona and go through the Phoenix Children's Hospital (also rated by the CF FOundation). We have a wonderful team of 4 (soon to be 5) CF specialists only. They all care deeply about the patients and will even socialize with us :-)

The air quality has its ups and down. You are facing dry air except in August when it is monsoon. Dry air is good, but in Phoenix itself there is a bit of a pollution problem. I have lived here all my 24 years and love it. :-)
Posted 9/2/2004 7:23 PM (GMT 0)
Hello I live in Oregon, Oregon Helth Scieces University is a great center
Posted 9/2/2004 7:25 PM (GMT 0)
They recently opened an Adult CF clinic. And have a great bunch of reaserchers
Posted 1/3/2005 5:59 AM (GMT 0)
chapel hill is excellent.  i think it is the number one hospital for lung transplants in the country.  (not that we like to think about these things, but it's good to know there are options like that available there.)  i have had such great care at the cf clinic, and the hospital experience isn't bad either.  north carolina is beautiful.  i moved here some years ago and i must warn you, whatever reason you come for you may not want to leave.  but there is good care everywhere.  good luck.
Posted 1/17/2005 11:39 PM (GMT 0)
My sister goes to clinic at Dallas Children's Hospital. She is 34 years old and has been going there for the past 20 years. Prior to that she was in Houston and Lubbock, but Dr. Rosenblatt through Children's Hospital is awesome! I thought this might help since you're in Texas.
Posted 2/6/2005 7:51 AM (GMT 0)
Santa Rosa Childresn Hospital, is a CF care center in San Antonio TX. I am 21 with CF and Santa Rosa has been great. The DR is very involved with the patient and they have a team to help you. You see a nutrionist every time and you take pulmoary function test and draw blood to make sure everything is ok. and test for new infections. They are wonderful and very good and concerned.
Posted 2/6/2005 8:05 AM (GMT 0)
A welcome to Chad,Wendy123 and shroomz143..............Glad to have yous all aboard the HW Family.I am usually on the Crohns forum but was just going thru the postings and thought i would say hello ..............Take care and you are sure to find what you are looking for:sorry I cannot be of help but just wanted to welcome yous all ...........God Bless
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