Good New / Bad News

Alyssa · Dec 25, 2007

Welcome back!

I think you are on the right track by being here. Yes we can all totally understand why you would choose to be here.

I still think it is possible that you have two genes that are either not Jewish, not yet identified, or would be found if you could run a full panel test. Keep trying, and/or look for other doctors who might agree to more testing, or at the very least treat you "as if" you have CF. That usually benefits the patient because they are followed regularly and given preventative/maintenance treatments even when they are not sick.

Yes, a sputum culture would be a good idea for the next time you get sick. I don't think there is much of anything to do that is out of the ordinary for them. Even before my daughter's diagnosis of CF her regular doctor would do a culture and usually found staph, then prescribed antibiotics for it. The two common CF bugs that you want to be sure they are looking for would be pseudomonus and b. cepacia

Keep up the hard work - yes, regular exercise should help to keep your FEV1 up.

Alyssa · Dec 25, 2007

Welcome back!

I think you are on the right track by being here. Yes we can all totally understand why you would choose to be here.

I still think it is possible that you have two genes that are either not Jewish, not yet identified, or would be found if you could run a full panel test. Keep trying, and/or look for other doctors who might agree to more testing, or at the very least treat you "as if" you have CF. That usually benefits the patient because they are followed regularly and given preventative/maintenance treatments even when they are not sick.

Yes, a sputum culture would be a good idea for the next time you get sick. I don't think there is much of anything to do that is out of the ordinary for them. Even before my daughter's diagnosis of CF her regular doctor would do a culture and usually found staph, then prescribed antibiotics for it. The two common CF bugs that you want to be sure they are looking for would be pseudomonus and b. cepacia

Keep up the hard work - yes, regular exercise should help to keep your FEV1 up.

Alyssa · Dec 25, 2007

Welcome back!

I think you are on the right track by being here. Yes we can all totally understand why you would choose to be here.

I still think it is possible that you have two genes that are either not Jewish, not yet identified, or would be found if you could run a full panel test. Keep trying, and/or look for other doctors who might agree to more testing, or at the very least treat you "as if" you have CF. That usually benefits the patient because they are followed regularly and given preventative/maintenance treatments even when they are not sick.

Yes, a sputum culture would be a good idea for the next time you get sick. I don't think there is much of anything to do that is out of the ordinary for them. Even before my daughter's diagnosis of CF her regular doctor would do a culture and usually found staph, then prescribed antibiotics for it. The two common CF bugs that you want to be sure they are looking for would be pseudomonus and b. cepacia

Keep up the hard work - yes, regular exercise should help to keep your FEV1 up.

Alyssa · Dec 25, 2007

Welcome back!

I think you are on the right track by being here. Yes we can all totally understand why you would choose to be here.

I still think it is possible that you have two genes that are either not Jewish, not yet identified, or would be found if you could run a full panel test. Keep trying, and/or look for other doctors who might agree to more testing, or at the very least treat you "as if" you have CF. That usually benefits the patient because they are followed regularly and given preventative/maintenance treatments even when they are not sick.

Yes, a sputum culture would be a good idea for the next time you get sick. I don't think there is much of anything to do that is out of the ordinary for them. Even before my daughter's diagnosis of CF her regular doctor would do a culture and usually found staph, then prescribed antibiotics for it. The two common CF bugs that you want to be sure they are looking for would be pseudomonus and b. cepacia

Keep up the hard work - yes, regular exercise should help to keep your FEV1 up.

Alyssa · Dec 25, 2007

Welcome back!

I think you are on the right track by being here. Yes we can all totally understand why you would choose to be here.

I still think it is possible that you have two genes that are either not Jewish, not yet identified, or would be found if you could run a full panel test. Keep trying, and/or look for other doctors who might agree to more testing, or at the very least treat you "as if" you have CF. That usually benefits the patient because they are followed regularly and given preventative/maintenance treatments even when they are not sick.

Yes, a sputum culture would be a good idea for the next time you get sick. I don't think there is much of anything to do that is out of the ordinary for them. Even before my daughter's diagnosis of CF her regular doctor would do a culture and usually found staph, then prescribed antibiotics for it. The two common CF bugs that you want to be sure they are looking for would be pseudomonus and b. cepacia

Keep up the hard work - yes, regular exercise should help to keep your FEV1 up.

Nervous1 · Dec 25, 2007