new diagnosis

china

New member
Hello.
I was diagnosed with cystic fibrosis at 18 anni.ora I 22.ho only pulmonary symptoms.
c is qulacuno of you who have been diagnosed at an early age 'adult or adolescent?
and how are you now?
please reply thanks
 

china

New member
Hello.
I was diagnosed with cystic fibrosis at 18 anni.ora I 22.ho only pulmonary symptoms.
c is qulacuno of you who have been diagnosed at an early age 'adult or adolescent?
and how are you now?
please reply thanks
 

china

New member
Hello.
<br />I was diagnosed with cystic fibrosis at 18 anni.ora I 22.ho only pulmonary symptoms.
<br />c is qulacuno of you who have been diagnosed at an early age 'adult or adolescent?
<br />and how are you now?
<br />please reply thanks
 

JustDucky

New member
I too was an adult diagnosis at 33, I am now nearly 39. I too mostly have pulmonary problems, but some GI (just not severe). My lungs aren't in the greatest shape right now, my diagnosis was missed because I did not present as a normal CF'er does although I had pretty wicked asthma along with many hospitalizations from lung infections. My primary care doc actually was the one who pushed for CF testing, I told her she was nuts for even considering it...I thought only kids and babies were diagnosed. She then proceeded to tell me that that was the norm, but there were more and more adults being diagnosed because the number of CF mutations were over 1100 at the time I was tested. Imagine my shock when my sweat test teetered on the edge of positive and also when my genetics came back as a definite mutation with one variant. And so, I received the label of "atypical CF"
Currently, I culture B. cepacia (after being clean for 2 years, the sucker came back! Grrr!), Achromobacter, Staph, and Pseudomonas. I am treated very aggressively and have required IV's frequently especially over this last year.
That's my story and I am sticking to it <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jenn
 

JustDucky

New member
I too was an adult diagnosis at 33, I am now nearly 39. I too mostly have pulmonary problems, but some GI (just not severe). My lungs aren't in the greatest shape right now, my diagnosis was missed because I did not present as a normal CF'er does although I had pretty wicked asthma along with many hospitalizations from lung infections. My primary care doc actually was the one who pushed for CF testing, I told her she was nuts for even considering it...I thought only kids and babies were diagnosed. She then proceeded to tell me that that was the norm, but there were more and more adults being diagnosed because the number of CF mutations were over 1100 at the time I was tested. Imagine my shock when my sweat test teetered on the edge of positive and also when my genetics came back as a definite mutation with one variant. And so, I received the label of "atypical CF"
Currently, I culture B. cepacia (after being clean for 2 years, the sucker came back! Grrr!), Achromobacter, Staph, and Pseudomonas. I am treated very aggressively and have required IV's frequently especially over this last year.
That's my story and I am sticking to it <img src="i/expressions/face-icon-small-smile.gif" border="0">
Jenn
 

JustDucky

New member
I too was an adult diagnosis at 33, I am now nearly 39. I too mostly have pulmonary problems, but some GI (just not severe). My lungs aren't in the greatest shape right now, my diagnosis was missed because I did not present as a normal CF'er does although I had pretty wicked asthma along with many hospitalizations from lung infections. My primary care doc actually was the one who pushed for CF testing, I told her she was nuts for even considering it...I thought only kids and babies were diagnosed. She then proceeded to tell me that that was the norm, but there were more and more adults being diagnosed because the number of CF mutations were over 1100 at the time I was tested. Imagine my shock when my sweat test teetered on the edge of positive and also when my genetics came back as a definite mutation with one variant. And so, I received the label of "atypical CF"
<br />Currently, I culture B. cepacia (after being clean for 2 years, the sucker came back! Grrr!), Achromobacter, Staph, and Pseudomonas. I am treated very aggressively and have required IV's frequently especially over this last year.
<br />That's my story and I am sticking to it <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Jenn
 
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