I've mentioned in other posts about trying to decide if we should continue going to the local CF clinic or just see a regular doctor in town and primarily see our CF doctor in the City. Getting close in time to yet another local CF clinic and get edgy -- cross contamination, lack of germ control practices, plus we seem to spend the majority of the time either cooling our heals for 4+ hours or listening to put downs about the care received by the CF doctor in the city.
Originally we thought it was great that there was a CF (nonaccredited) clinic in our city because one of our primary concerns what "what if DS got sick? Do we drive to the City? Will we get adequate care in town? What if DS needs to be admited?"
So we started going to the local clinic -- thought it was ideal to have blood work, cultures, xrays, etc done locally and then send the reports to our doctor in the city.
Last clinic appointment I mentioned a liver function test that our doctor in the City has started using -- factor something or other -- to determine early on if there's liver damage. The gastro doctor scoffed at me and refused to order the test. DS was having accidents this spring, our doctor in the city wanted to rule out diabetes or an infection so asked that the local clinic do a urine test, urine culture to see if anything is growing and a blood test to test for glucose. They REFUSED to do the culture.
Add to that the flu shot fiasco every year -- the tell me DS is top of the list 'cuz of his CF, then when it comes time for flu shot season -- they don't have any available for him. I recently found out at DS's well child exam last month that they had TONS left over in May. We had to get his flu shot in the City. Local doctor said there must've been a miscommunication. How can one misunderstand DS has CF, we were told he's a priority for receiving the vaccine and we called and emailed the clinic several times.
Add to that when DS does get sick -- I call the clinic and get told to go to urgent care or if I can get an appointment I'm told DS's cough is normal -- it's what cfers do. Over the past three years he's later been diagnosed with bronchitis twice, 3-4 sinus infections. Grrrr!
So we're toying with the idea of just seeing the regular peds doctor who is head of the CF clinic and skipping out on the whole CF clinic experience. Or another option is seeing a family practice doctor in our town who supposedly sees some other CFers and rumor has it has a couple of children who have CF. Just hate to get a bad rep -- get put on a double secret list and blackballed and have to take DS to the veterinarian like Elaine and Cramer on Seinfeld.
So basically I'm just venting. Trying to figure stuff out. Basically I'm terrified of the germy cf clinic, get angered when we ask for a test and are refused... We just want what is best for our son and are pretty sure we're not getting it where we're at -- but if we change will it be better or worse?
Originally we thought it was great that there was a CF (nonaccredited) clinic in our city because one of our primary concerns what "what if DS got sick? Do we drive to the City? Will we get adequate care in town? What if DS needs to be admited?"
So we started going to the local clinic -- thought it was ideal to have blood work, cultures, xrays, etc done locally and then send the reports to our doctor in the city.
Last clinic appointment I mentioned a liver function test that our doctor in the City has started using -- factor something or other -- to determine early on if there's liver damage. The gastro doctor scoffed at me and refused to order the test. DS was having accidents this spring, our doctor in the city wanted to rule out diabetes or an infection so asked that the local clinic do a urine test, urine culture to see if anything is growing and a blood test to test for glucose. They REFUSED to do the culture.
Add to that the flu shot fiasco every year -- the tell me DS is top of the list 'cuz of his CF, then when it comes time for flu shot season -- they don't have any available for him. I recently found out at DS's well child exam last month that they had TONS left over in May. We had to get his flu shot in the City. Local doctor said there must've been a miscommunication. How can one misunderstand DS has CF, we were told he's a priority for receiving the vaccine and we called and emailed the clinic several times.
Add to that when DS does get sick -- I call the clinic and get told to go to urgent care or if I can get an appointment I'm told DS's cough is normal -- it's what cfers do. Over the past three years he's later been diagnosed with bronchitis twice, 3-4 sinus infections. Grrrr!
So we're toying with the idea of just seeing the regular peds doctor who is head of the CF clinic and skipping out on the whole CF clinic experience. Or another option is seeing a family practice doctor in our town who supposedly sees some other CFers and rumor has it has a couple of children who have CF. Just hate to get a bad rep -- get put on a double secret list and blackballed and have to take DS to the veterinarian like Elaine and Cramer on Seinfeld.
So basically I'm just venting. Trying to figure stuff out. Basically I'm terrified of the germy cf clinic, get angered when we ask for a test and are refused... We just want what is best for our son and are pretty sure we're not getting it where we're at -- but if we change will it be better or worse?