Yes, an involved CF care center is an absolute as an adult. There is no care center that is going to care more about your health than you will. That being said, it's good to know that teaching hospitals typically have better care centers because they are driven by results...and there is something to be said about the staff physicians that are employed there- they take those positions via deliberate decisions to do the very best they can.
I started feeling neglected some years ago at my previous care center in West Palm Beach and decided to check out Emory in Atlanta. The two are night and day. Emory is a true teaching hospital with an incredible staff at every level.
My understanding is that the culprit of apathetic care is now gone from St. Mary's and replaced with somebody extremely capable. I will not switch back however, since I have witnessed a staff and system of care that is perhaps, second to none. Also, I do hold my previous physician accountable to for a decline in health that could have been avoided had I undergone some of the diagnostic tests in years prior, that I did undergo at my first visit to Emory University's CF care center. I can not be secretive and sparing of feelings and add any value to a response without pointing out the vast differences in care centers. I went through everything from unreported labs to no labs at all from my previous center. At my first visit to Emory, they were shocked that my records were so thin and that I was completely missing certain diagnostic tests that they had been running of their adult population for years. To learn that I had moderate to sever osteoporosis (upon my first ever bone scan) simply due to a calcium deficiency, caused a rage that will impact trust in my previous center for a very long time.
There are drawbacks, but let me say that they are minor when you realize that you need to always put health first. As a sidenote, I realize that people typically have 3-4 items rank filed as the most important things in their life: Their family; their religion; their health; and their finances. With CF, we have the responsibility of keeping health toward the top- or at least recognizing that it is always most salient. It's almost ironic that I manage the financial lives of others, yet I know that my clients love the fact that my life is about discipline....that spills over into how I handle my business.
The dynamic between health and family has several issues already, and one more when you factor in "an away" care center: You will not have them around as much as you would like should you need to be hospitalized. It's important to recognize since spouses and kids can not put everything on hold to be with you for the duration of a stay. And most importantly, you would not want to check in to your local hospital if you are deliberately attending a different care center for superior care, i.e. if you don't trust them for check-ups, you don't want them in a time of distress.
If I turned an objective response into a vent, I can at least double back and give an outdated but very astute observation about Texas. I will preface it by dating it to 25 years ago: I attended the Children's Medical Center in Dallas 25 years ago for multiple years and felt that they were fantastic (as much as an mildly affected child/adolescent could discern from attendence. However, I also attended CF camps in San Antonio back then and clearly witnessed remarkable and superior health differences in the attendees from the Houston CF Clinic. Again, I believe to be the fact that the Houston Clinic was tied to a teaching hospital back then and Dallas was not. I believe that Dallas Childrens' Medical Center may be tied to Baylor Dallas now but not sure. I also understand UAB Birmingham to be a great center and a little closer to you. Lastly, if you love plane trips, consider the research and transplant meca of Duke in NC. It seems that all the best infomation and CFF protocol comes from there. It was my next stops if Emory had not been so incredible.
Hope that helps the decision process.
