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for mamerth
- Thread starter china
- Start date
I was diagnosed by the ENT initially. I had 2 sweat tests. My CF has progressed very slowly until recently. I had a good pregnancy despite my CF. The reason my CF has progressed recently is that I went without treatment for about 15 years. I had no insurance. I have 72% lung function, mild to moderate digestive issues. I am on Zenpep and my body does well with the dosage that I am on. I have the ability to gain weight-- this happened after I got on the correct dosage of enzymes. Early on after my diagnosis I struggled to gain weight-- had a hard time getting the right enzyme. I have developed CFRD. Right now I am not on insulin... sugars are controlled with diet and some exercise.
We finally have my lungs in a good place-- and stable. I have very mild lung scaring in the lower lobes. Since I went without treatment for so long I now have to start dealing with major sinus issues. Sinus issue have been the thorn in my CF-- even before my diagnosis. I have had multiple sinus surgeries. Now I am dealing with some heart related issues.
My doctors are very optimistic about my lifespan. I have researched our mutation and the articles that I have read say that the disease appears to progresses slower with this mutation. Not sure how how they have come to that conclusion.
Before my diagnosis I was constantly sick as a kid. Constant sinus infections, upper respiratory infections and super skinny. I several bouts of pancreatitis before my diagnosis as well. I had a dumb doctor who refused to believe I was anything more than fussy kid who enjoyed being sick. Soon as I as diagnosed we dropped him and my CF doctors took over my care full time. I was born premature and they attributed my low birth weight to other factors... we now know it was likely due to my Cystic Fibrosis.
I hope this helps.... You are the first person I have met with the same mutation.
We finally have my lungs in a good place-- and stable. I have very mild lung scaring in the lower lobes. Since I went without treatment for so long I now have to start dealing with major sinus issues. Sinus issue have been the thorn in my CF-- even before my diagnosis. I have had multiple sinus surgeries. Now I am dealing with some heart related issues.
My doctors are very optimistic about my lifespan. I have researched our mutation and the articles that I have read say that the disease appears to progresses slower with this mutation. Not sure how how they have come to that conclusion.
Before my diagnosis I was constantly sick as a kid. Constant sinus infections, upper respiratory infections and super skinny. I several bouts of pancreatitis before my diagnosis as well. I had a dumb doctor who refused to believe I was anything more than fussy kid who enjoyed being sick. Soon as I as diagnosed we dropped him and my CF doctors took over my care full time. I was born premature and they attributed my low birth weight to other factors... we now know it was likely due to my Cystic Fibrosis.
I hope this helps.... You are the first person I have met with the same mutation.
I was diagnosed by the ENT initially. I had 2 sweat tests. My CF has progressed very slowly until recently. I had a good pregnancy despite my CF. The reason my CF has progressed recently is that I went without treatment for about 15 years. I had no insurance. I have 72% lung function, mild to moderate digestive issues. I am on Zenpep and my body does well with the dosage that I am on. I have the ability to gain weight-- this happened after I got on the correct dosage of enzymes. Early on after my diagnosis I struggled to gain weight-- had a hard time getting the right enzyme. I have developed CFRD. Right now I am not on insulin... sugars are controlled with diet and some exercise.
We finally have my lungs in a good place-- and stable. I have very mild lung scaring in the lower lobes. Since I went without treatment for so long I now have to start dealing with major sinus issues. Sinus issue have been the thorn in my CF-- even before my diagnosis. I have had multiple sinus surgeries. Now I am dealing with some heart related issues.
My doctors are very optimistic about my lifespan. I have researched our mutation and the articles that I have read say that the disease appears to progresses slower with this mutation. Not sure how how they have come to that conclusion.
Before my diagnosis I was constantly sick as a kid. Constant sinus infections, upper respiratory infections and super skinny. I several bouts of pancreatitis before my diagnosis as well. I had a dumb doctor who refused to believe I was anything more than fussy kid who enjoyed being sick. Soon as I as diagnosed we dropped him and my CF doctors took over my care full time. I was born premature and they attributed my low birth weight to other factors... we now know it was likely due to my Cystic Fibrosis.
I hope this helps.... You are the first person I have met with the same mutation.
We finally have my lungs in a good place-- and stable. I have very mild lung scaring in the lower lobes. Since I went without treatment for so long I now have to start dealing with major sinus issues. Sinus issue have been the thorn in my CF-- even before my diagnosis. I have had multiple sinus surgeries. Now I am dealing with some heart related issues.
My doctors are very optimistic about my lifespan. I have researched our mutation and the articles that I have read say that the disease appears to progresses slower with this mutation. Not sure how how they have come to that conclusion.
Before my diagnosis I was constantly sick as a kid. Constant sinus infections, upper respiratory infections and super skinny. I several bouts of pancreatitis before my diagnosis as well. I had a dumb doctor who refused to believe I was anything more than fussy kid who enjoyed being sick. Soon as I as diagnosed we dropped him and my CF doctors took over my care full time. I was born premature and they attributed my low birth weight to other factors... we now know it was likely due to my Cystic Fibrosis.
I hope this helps.... You are the first person I have met with the same mutation.
I was diagnosed by the ENT initially. I had 2 sweat tests. My CF has progressed very slowly until recently. I had a good pregnancy despite my CF. The reason my CF has progressed recently is that I went without treatment for about 15 years. I had no insurance. I have 72% lung function, mild to moderate digestive issues. I am on Zenpep and my body does well with the dosage that I am on. I have the ability to gain weight-- this happened after I got on the correct dosage of enzymes. Early on after my diagnosis I struggled to gain weight-- had a hard time getting the right enzyme. I have developed CFRD. Right now I am not on insulin... sugars are controlled with diet and some exercise.
<br />
<br />We finally have my lungs in a good place-- and stable. I have very mild lung scaring in the lower lobes. Since I went without treatment for so long I now have to start dealing with major sinus issues. Sinus issue have been the thorn in my CF-- even before my diagnosis. I have had multiple sinus surgeries. Now I am dealing with some heart related issues.
<br />
<br />My doctors are very optimistic about my lifespan. I have researched our mutation and the articles that I have read say that the disease appears to progresses slower with this mutation. Not sure how how they have come to that conclusion.
<br />
<br />Before my diagnosis I was constantly sick as a kid. Constant sinus infections, upper respiratory infections and super skinny. I several bouts of pancreatitis before my diagnosis as well. I had a dumb doctor who refused to believe I was anything more than fussy kid who enjoyed being sick. Soon as I as diagnosed we dropped him and my CF doctors took over my care full time. I was born premature and they attributed my low birth weight to other factors... we now know it was likely due to my Cystic Fibrosis.
<br />
<br />I hope this helps.... You are the first person I have met with the same mutation.
<br />
<br />We finally have my lungs in a good place-- and stable. I have very mild lung scaring in the lower lobes. Since I went without treatment for so long I now have to start dealing with major sinus issues. Sinus issue have been the thorn in my CF-- even before my diagnosis. I have had multiple sinus surgeries. Now I am dealing with some heart related issues.
<br />
<br />My doctors are very optimistic about my lifespan. I have researched our mutation and the articles that I have read say that the disease appears to progresses slower with this mutation. Not sure how how they have come to that conclusion.
<br />
<br />Before my diagnosis I was constantly sick as a kid. Constant sinus infections, upper respiratory infections and super skinny. I several bouts of pancreatitis before my diagnosis as well. I had a dumb doctor who refused to believe I was anything more than fussy kid who enjoyed being sick. Soon as I as diagnosed we dropped him and my CF doctors took over my care full time. I was born premature and they attributed my low birth weight to other factors... we now know it was likely due to my Cystic Fibrosis.
<br />
<br />I hope this helps.... You are the first person I have met with the same mutation.