This seems to be a hot topic now; but, I didn't want to intrude on anyone's thread.
I am VERY frustrated with options for care in places that don't have a huge population. I drive 3 hours to a big center in a BIG city. My local option is a brand new center with a brand new doctor who has just completed his fellowship and is heading up the CF department, yikes!
I think we have a great foundation that advocates for us; but, I really wish pulmonologists and general practitioners had a better and more broad knowledge of CF. I DON'T like being limited in my options because of where I live. What about the people in bigger cities who may even have a couple of options and still don't like their choices.
I wish there was a way that a regular pulmonologist could work with a CF patient in a more rural area and connect somehow to a bigger center or a center that would advise them or provide some professional oversite. Some of the most involved, concerned, and compassionate docs I have had in my lifetime were not CF docs....though I have had a couple of very good CF docs.
I find that sometimes outside docs are better at looking at the whole picture and less about comparing one patient to another. They also seem to have more time to answer specific questions or more willing to do some extra research.
I don't know what the answer is for rural areas; but, I hope to see a better connection between the CF world and the overall medical world in the future.
I am VERY frustrated with options for care in places that don't have a huge population. I drive 3 hours to a big center in a BIG city. My local option is a brand new center with a brand new doctor who has just completed his fellowship and is heading up the CF department, yikes!
I think we have a great foundation that advocates for us; but, I really wish pulmonologists and general practitioners had a better and more broad knowledge of CF. I DON'T like being limited in my options because of where I live. What about the people in bigger cities who may even have a couple of options and still don't like their choices.
I wish there was a way that a regular pulmonologist could work with a CF patient in a more rural area and connect somehow to a bigger center or a center that would advise them or provide some professional oversite. Some of the most involved, concerned, and compassionate docs I have had in my lifetime were not CF docs....though I have had a couple of very good CF docs.
I find that sometimes outside docs are better at looking at the whole picture and less about comparing one patient to another. They also seem to have more time to answer specific questions or more willing to do some extra research.
I don't know what the answer is for rural areas; but, I hope to see a better connection between the CF world and the overall medical world in the future.