my65roses4me
New member
Sitting here in tears and need advice (update)
I just got off the phone with my Dr's office again. She double checked what the secretary said and called me back to talk about it. My Dr says that he believes that my last genotype was correct but since I was so convinced that I had DDf508 from other sources he wants me to get retested.
They are going to take blood on Fri and send it out to Quest to check for 1400 mutations. That way I will know for sure and if this most recent genotype was right then they will prob be able to identify the mutation that was unknown in 2002.
I did clarify a question that I had though.
I asked if that "unidentified" mutation was because it was a rare one or because their was a mistake in the test.
My Dr said it was because it was a rare one that they didn't have a name for at the time and that is was not an error on the test.
The test will take around 4 weeks to get back so the wait will be somewhat unbearable.
But as you all said it doesn't change my prognosis, it just may change which meds I qualify for. All in all I will still have CF.
I just got off the phone with my Dr's office again. She double checked what the secretary said and called me back to talk about it. My Dr says that he believes that my last genotype was correct but since I was so convinced that I had DDf508 from other sources he wants me to get retested.
They are going to take blood on Fri and send it out to Quest to check for 1400 mutations. That way I will know for sure and if this most recent genotype was right then they will prob be able to identify the mutation that was unknown in 2002.
I did clarify a question that I had though.
I asked if that "unidentified" mutation was because it was a rare one or because their was a mistake in the test.
My Dr said it was because it was a rare one that they didn't have a name for at the time and that is was not an error on the test.
The test will take around 4 weeks to get back so the wait will be somewhat unbearable.
But as you all said it doesn't change my prognosis, it just may change which meds I qualify for. All in all I will still have CF.