One thing to think about, the top rated centers are often located in large cities and but some of them have pollution problems due to car exhausts and so on. For example, Dallas Children's is a great clinic but like much of Texas, Dallas's air quality, during the summer, can be pretty bad. We found that on hot days, when we got about an hour outside of Dallas, Philip was start coughing a little, like he had a tickle in his throat. The cough would get a little worse as the day went on and then, within a couple of days, he would become sick enough to require prednisone and antibiotics. It only took a couple of times before we (the clinic and I) caught on to the fact that the times this happened was when the air quality indicators in Dallas were in the moderate to red zones.. the higher the indicators the worse he became. So, we tried not to schedule a regular (non-sick) visit during June/July/August. My advice is to check the air quality levels for any place you are thinking about moving too, especially during the hottest months of the year. Good luck!
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where is the best and top-rated CF center?
- Thread starter panderson1215
- Start date
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welshwitch
Guest
I love my CF center in Oakland, CA. There are also many in the Bay Area (Stanford, UCSF, etc.)
imported_MaggieB
New member
Hi, I agree with many of the thoughts here. I went to St. Christopher's in Philadelphia until I was 22, then bounced around the country and ended up back in Philly at University of Pennsylvania (for adult care). Both of my Philly hospitals were great.
I'm 39, though, and if there's one thing I've learned, it's that you/your child are the constant, not the center or the doctors, nurses, social workers, nutritionists. As wonderful as many, many of my caregivers has been, I've been doing this for a loooong time, and what I look for is more the KIND of care I will get. Sit down and figure out what you're looking for in a care experience. I want to be encouraged but not berated. I want to be a respected member of the team. I want a clinic involved in research. I want my team to be looking to help me until a cure is found, not helped until I die (it's an attitude, not a certainty).
Those are some of the things I look for. If I were you, and you really can move anywhere, figure out what's important to you in a team first. When you start looking at cities/towns to live in that work for your jobs, family, schools, etc, go and interview the staff at the local CF centers. See what makes you feel comfortable.
Finally, accept that no one center is the one that will prevent your child from ever getting sick, and just find one you feel you can jive with. Hope that's helpful!
I'm 39, though, and if there's one thing I've learned, it's that you/your child are the constant, not the center or the doctors, nurses, social workers, nutritionists. As wonderful as many, many of my caregivers has been, I've been doing this for a loooong time, and what I look for is more the KIND of care I will get. Sit down and figure out what you're looking for in a care experience. I want to be encouraged but not berated. I want to be a respected member of the team. I want a clinic involved in research. I want my team to be looking to help me until a cure is found, not helped until I die (it's an attitude, not a certainty).
Those are some of the things I look for. If I were you, and you really can move anywhere, figure out what's important to you in a team first. When you start looking at cities/towns to live in that work for your jobs, family, schools, etc, go and interview the staff at the local CF centers. See what makes you feel comfortable.
Finally, accept that no one center is the one that will prevent your child from ever getting sick, and just find one you feel you can jive with. Hope that's helpful!