H2OSPORTSMOM
New member
Hello Friends,
I just wanted to give an up date. The CF center we went to did a CF 70. It is just that it only checked for 70 of the most common genes. We have not met with the CF Center to discuss results but we requested results from lab before we do meet back with them. The reslts are a bit confusing it reads - Negative for the mutations analysed. The Interpretation reads - This symptomatic patient is negative for common SF mutations. This result does not exclude a diagnosis of CF. It is possible that this patient has one if not two mutations not detected by this test. This test detects variable rates of mutations depending on patients ethnic background and so on. That was the most of it. I don't understand why test for only 70 of possible 1500 genes? How do you get physicians to help you rule this out and get on with your life. We do talk back with the CF Center Doctor on August 9, Test was done on May 15, another discouraging aspect. No one ever calls you back patients must feel like they are hopunding the docs to just call them back. I know we are blessed that Reid's lungs are so clear. His sinus not so good. He is still sweating salt bullets, but all in all doing good. I just want to be proactive if this is still a possibility. Why do docs not want to order the broader tests first is it insurance? We have great coverage there, I think. What would some of you do that have been down this path before. I need some leverage advice so when I go back to the Center next month. Thanks for your advice and encouragment so far!! Thanks for this site on the Web!!
I just wanted to give an up date. The CF center we went to did a CF 70. It is just that it only checked for 70 of the most common genes. We have not met with the CF Center to discuss results but we requested results from lab before we do meet back with them. The reslts are a bit confusing it reads - Negative for the mutations analysed. The Interpretation reads - This symptomatic patient is negative for common SF mutations. This result does not exclude a diagnosis of CF. It is possible that this patient has one if not two mutations not detected by this test. This test detects variable rates of mutations depending on patients ethnic background and so on. That was the most of it. I don't understand why test for only 70 of possible 1500 genes? How do you get physicians to help you rule this out and get on with your life. We do talk back with the CF Center Doctor on August 9, Test was done on May 15, another discouraging aspect. No one ever calls you back patients must feel like they are hopunding the docs to just call them back. I know we are blessed that Reid's lungs are so clear. His sinus not so good. He is still sweating salt bullets, but all in all doing good. I just want to be proactive if this is still a possibility. Why do docs not want to order the broader tests first is it insurance? We have great coverage there, I think. What would some of you do that have been down this path before. I need some leverage advice so when I go back to the Center next month. Thanks for your advice and encouragment so far!! Thanks for this site on the Web!!