My name is Jeff...I'm 24 years old, for a couple more days at least...I live in sunny southern california...I was officially diagnosed with CF at the age of 20...I say officially becaus there had been speculation my whole life...None of my relatives have ever been diagnosed with CF going back through my family tree as far as I could go...around the age of 6 I developed what my family came to know as my "morning cough"...anytime we approached my primary care physician about the matter they always ruled it as allergies or post nasal drip because I had never had pneumonia or any respiratory problems in the past...as I approached my adolescent years I started to become very self conscious about my size, starting high school I was 4'10" and about 70 pounds...we again turned to my primary care physician who had a much different reaction this time, he referred me to an endocronologist who ran a bunch of tests on my hormones all which came back normal...we then told him about this "morning cough", he instantly said CF...we scheduled the sweat test which came back inconclusive...he sent me to Children's Hospital in Los Angeles for the same test, which had the same result, inconclusive...in 2004 I got what started as bronchitis for the first time in my life, I didn't go to the doctor, I was kinda hard headed about that...but when I finally did they called 911 as a possible respiratory arrest, my oxygen saturation was 72%...while in the hospital the CF speculation came up again, again I was given the sweat test and again same result...finally they drew blood and a week later the results came back positive...since then I have been hospitalized twice but have reoccurring respiratory infections quite often...my question to you as my peers is what oral antibiotics are best and most effective for you guys and who should i see about regular treatment because I always feel like my doctor isn't very knowledgeable on the subject...my current treatments just involve daily breathing treatments with Xopenex and when I feel like I'm getting sick I take Levaquin orally...please help me out if you can...Thank you guys...Breathe...
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Living with CF
- Thread starter breathe7
- Start date
My name is Jeff...I'm 24 years old, for a couple more days at least...I live in sunny southern california...I was officially diagnosed with CF at the age of 20...I say officially becaus there had been speculation my whole life...None of my relatives have ever been diagnosed with CF going back through my family tree as far as I could go...around the age of 6 I developed what my family came to know as my "morning cough"...anytime we approached my primary care physician about the matter they always ruled it as allergies or post nasal drip because I had never had pneumonia or any respiratory problems in the past...as I approached my adolescent years I started to become very self conscious about my size, starting high school I was 4'10" and about 70 pounds...we again turned to my primary care physician who had a much different reaction this time, he referred me to an endocronologist who ran a bunch of tests on my hormones all which came back normal...we then told him about this "morning cough", he instantly said CF...we scheduled the sweat test which came back inconclusive...he sent me to Children's Hospital in Los Angeles for the same test, which had the same result, inconclusive...in 2004 I got what started as bronchitis for the first time in my life, I didn't go to the doctor, I was kinda hard headed about that...but when I finally did they called 911 as a possible respiratory arrest, my oxygen saturation was 72%...while in the hospital the CF speculation came up again, again I was given the sweat test and again same result...finally they drew blood and a week later the results came back positive...since then I have been hospitalized twice but have reoccurring respiratory infections quite often...my question to you as my peers is what oral antibiotics are best and most effective for you guys and who should i see about regular treatment because I always feel like my doctor isn't very knowledgeable on the subject...my current treatments just involve daily breathing treatments with Xopenex and when I feel like I'm getting sick I take Levaquin orally...please help me out if you can...Thank you guys...Breathe...
My name is Jeff...I'm 24 years old, for a couple more days at least...I live in sunny southern california...I was officially diagnosed with CF at the age of 20...I say officially becaus there had been speculation my whole life...None of my relatives have ever been diagnosed with CF going back through my family tree as far as I could go...around the age of 6 I developed what my family came to know as my "morning cough"...anytime we approached my primary care physician about the matter they always ruled it as allergies or post nasal drip because I had never had pneumonia or any respiratory problems in the past...as I approached my adolescent years I started to become very self conscious about my size, starting high school I was 4'10" and about 70 pounds...we again turned to my primary care physician who had a much different reaction this time, he referred me to an endocronologist who ran a bunch of tests on my hormones all which came back normal...we then told him about this "morning cough", he instantly said CF...we scheduled the sweat test which came back inconclusive...he sent me to Children's Hospital in Los Angeles for the same test, which had the same result, inconclusive...in 2004 I got what started as bronchitis for the first time in my life, I didn't go to the doctor, I was kinda hard headed about that...but when I finally did they called 911 as a possible respiratory arrest, my oxygen saturation was 72%...while in the hospital the CF speculation came up again, again I was given the sweat test and again same result...finally they drew blood and a week later the results came back positive...since then I have been hospitalized twice but have reoccurring respiratory infections quite often...my question to you as my peers is what oral antibiotics are best and most effective for you guys and who should i see about regular treatment because I always feel like my doctor isn't very knowledgeable on the subject...my current treatments just involve daily breathing treatments with Xopenex and when I feel like I'm getting sick I take Levaquin orally...please help me out if you can...Thank you guys...Breathe...
My name is Jeff...I'm 24 years old, for a couple more days at least...I live in sunny southern california...I was officially diagnosed with CF at the age of 20...I say officially becaus there had been speculation my whole life...None of my relatives have ever been diagnosed with CF going back through my family tree as far as I could go...around the age of 6 I developed what my family came to know as my "morning cough"...anytime we approached my primary care physician about the matter they always ruled it as allergies or post nasal drip because I had never had pneumonia or any respiratory problems in the past...as I approached my adolescent years I started to become very self conscious about my size, starting high school I was 4'10" and about 70 pounds...we again turned to my primary care physician who had a much different reaction this time, he referred me to an endocronologist who ran a bunch of tests on my hormones all which came back normal...we then told him about this "morning cough", he instantly said CF...we scheduled the sweat test which came back inconclusive...he sent me to Children's Hospital in Los Angeles for the same test, which had the same result, inconclusive...in 2004 I got what started as bronchitis for the first time in my life, I didn't go to the doctor, I was kinda hard headed about that...but when I finally did they called 911 as a possible respiratory arrest, my oxygen saturation was 72%...while in the hospital the CF speculation came up again, again I was given the sweat test and again same result...finally they drew blood and a week later the results came back positive...since then I have been hospitalized twice but have reoccurring respiratory infections quite often...my question to you as my peers is what oral antibiotics are best and most effective for you guys and who should i see about regular treatment because I always feel like my doctor isn't very knowledgeable on the subject...my current treatments just involve daily breathing treatments with Xopenex and when I feel like I'm getting sick I take Levaquin orally...please help me out if you can...Thank you guys...Breathe...
My name is Jeff...I'm 24 years old, for a couple more days at least...I live in sunny southern california...I was officially diagnosed with CF at the age of 20...I say officially becaus there had been speculation my whole life...None of my relatives have ever been diagnosed with CF going back through my family tree as far as I could go...around the age of 6 I developed what my family came to know as my "morning cough"...anytime we approached my primary care physician about the matter they always ruled it as allergies or post nasal drip because I had never had pneumonia or any respiratory problems in the past...as I approached my adolescent years I started to become very self conscious about my size, starting high school I was 4'10" and about 70 pounds...we again turned to my primary care physician who had a much different reaction this time, he referred me to an endocronologist who ran a bunch of tests on my hormones all which came back normal...we then told him about this "morning cough", he instantly said CF...we scheduled the sweat test which came back inconclusive...he sent me to Children's Hospital in Los Angeles for the same test, which had the same result, inconclusive...in 2004 I got what started as bronchitis for the first time in my life, I didn't go to the doctor, I was kinda hard headed about that...but when I finally did they called 911 as a possible respiratory arrest, my oxygen saturation was 72%...while in the hospital the CF speculation came up again, again I was given the sweat test and again same result...finally they drew blood and a week later the results came back positive...since then I have been hospitalized twice but have reoccurring respiratory infections quite often...my question to you as my peers is what oral antibiotics are best and most effective for you guys and who should i see about regular treatment because I always feel like my doctor isn't very knowledgeable on the subject...my current treatments just involve daily breathing treatments with Xopenex and when I feel like I'm getting sick I take Levaquin orally...please help me out if you can...Thank you guys...Breathe...
Jeff- do you have a CF physician? That's your first step. That will get you on the right track to feeling better! If you are still having weight gaining problems, you may have an enzyme deficiency and need to take enzymes when you eat. I have never heard of Xopenex, so I can't help you there. I take Albuterol, Pulmozyme, and Tobramyacin as breathing treatments.
To me, it sounds like you are not getting adequate care because your doctor isn't trained in the CF field. Look in your area for a CF doctor please!
-Annie
To me, it sounds like you are not getting adequate care because your doctor isn't trained in the CF field. Look in your area for a CF doctor please!
-Annie
Jeff- do you have a CF physician? That's your first step. That will get you on the right track to feeling better! If you are still having weight gaining problems, you may have an enzyme deficiency and need to take enzymes when you eat. I have never heard of Xopenex, so I can't help you there. I take Albuterol, Pulmozyme, and Tobramyacin as breathing treatments.
To me, it sounds like you are not getting adequate care because your doctor isn't trained in the CF field. Look in your area for a CF doctor please!
-Annie
To me, it sounds like you are not getting adequate care because your doctor isn't trained in the CF field. Look in your area for a CF doctor please!
-Annie
Jeff- do you have a CF physician? That's your first step. That will get you on the right track to feeling better! If you are still having weight gaining problems, you may have an enzyme deficiency and need to take enzymes when you eat. I have never heard of Xopenex, so I can't help you there. I take Albuterol, Pulmozyme, and Tobramyacin as breathing treatments.
To me, it sounds like you are not getting adequate care because your doctor isn't trained in the CF field. Look in your area for a CF doctor please!
-Annie
To me, it sounds like you are not getting adequate care because your doctor isn't trained in the CF field. Look in your area for a CF doctor please!
-Annie
Jeff- do you have a CF physician? That's your first step. That will get you on the right track to feeling better! If you are still having weight gaining problems, you may have an enzyme deficiency and need to take enzymes when you eat. I have never heard of Xopenex, so I can't help you there. I take Albuterol, Pulmozyme, and Tobramyacin as breathing treatments.
To me, it sounds like you are not getting adequate care because your doctor isn't trained in the CF field. Look in your area for a CF doctor please!
-Annie
To me, it sounds like you are not getting adequate care because your doctor isn't trained in the CF field. Look in your area for a CF doctor please!
-Annie
Jeff- do you have a CF physician? That's your first step. That will get you on the right track to feeling better! If you are still having weight gaining problems, you may have an enzyme deficiency and need to take enzymes when you eat. I have never heard of Xopenex, so I can't help you there. I take Albuterol, Pulmozyme, and Tobramyacin as breathing treatments.
<br />
<br />To me, it sounds like you are not getting adequate care because your doctor isn't trained in the CF field. Look in your area for a CF doctor please!
<br />
<br />-Annie
<br />
<br />To me, it sounds like you are not getting adequate care because your doctor isn't trained in the CF field. Look in your area for a CF doctor please!
<br />
<br />-Annie
Ready2Dance
New member
I'm with Annie. You should get a hold of a CF doc in your area first. They will give you the most up-to-date info on treatment and management possibilities. Xopenex is awesome and if your insurance will cover it, stay on it. It's the same as albuterol but tends not to give people the jittery side effects.
Best of luck and make sure to ask questions... lots of them. The more YOU understand, the better chance you have at maintaining a "normal" life <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck and make sure to ask questions... lots of them. The more YOU understand, the better chance you have at maintaining a "normal" life <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ready2Dance
New member
I'm with Annie. You should get a hold of a CF doc in your area first. They will give you the most up-to-date info on treatment and management possibilities. Xopenex is awesome and if your insurance will cover it, stay on it. It's the same as albuterol but tends not to give people the jittery side effects.
Best of luck and make sure to ask questions... lots of them. The more YOU understand, the better chance you have at maintaining a "normal" life <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck and make sure to ask questions... lots of them. The more YOU understand, the better chance you have at maintaining a "normal" life <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ready2Dance
New member
I'm with Annie. You should get a hold of a CF doc in your area first. They will give you the most up-to-date info on treatment and management possibilities. Xopenex is awesome and if your insurance will cover it, stay on it. It's the same as albuterol but tends not to give people the jittery side effects.
Best of luck and make sure to ask questions... lots of them. The more YOU understand, the better chance you have at maintaining a "normal" life <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck and make sure to ask questions... lots of them. The more YOU understand, the better chance you have at maintaining a "normal" life <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ready2Dance
New member
I'm with Annie. You should get a hold of a CF doc in your area first. They will give you the most up-to-date info on treatment and management possibilities. Xopenex is awesome and if your insurance will cover it, stay on it. It's the same as albuterol but tends not to give people the jittery side effects.
Best of luck and make sure to ask questions... lots of them. The more YOU understand, the better chance you have at maintaining a "normal" life <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck and make sure to ask questions... lots of them. The more YOU understand, the better chance you have at maintaining a "normal" life <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ready2Dance
New member
I'm with Annie. You should get a hold of a CF doc in your area first. They will give you the most up-to-date info on treatment and management possibilities. Xopenex is awesome and if your insurance will cover it, stay on it. It's the same as albuterol but tends not to give people the jittery side effects.
<br />
<br />Best of luck and make sure to ask questions... lots of them. The more YOU understand, the better chance you have at maintaining a "normal" life <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Best of luck and make sure to ask questions... lots of them. The more YOU understand, the better chance you have at maintaining a "normal" life <img src="i/expressions/face-icon-small-smile.gif" border="0">