Diagnosed later in life?

R

RiRi

Guest
Who here was diagnosed as an adult with CF? If you don't mind sharing what age?
 
R

RiRi

Guest
Who here was diagnosed as an adult with CF? If you don't mind sharing what age?
 
R

RiRi

Guest
Who here was diagnosed as an adult with CF? If you don't mind sharing what age?
 
R

RiRi

Guest
Oh yeah...Also wanted to know what symptoms you had and what led you to the conclusion it was CF.


Thanks
 
R

RiRi

Guest
Oh yeah...Also wanted to know what symptoms you had and what led you to the conclusion it was CF.


Thanks
 
R

RiRi

Guest
Oh yeah...Also wanted to know what symptoms you had and what led you to the conclusion it was CF.


Thanks
 
R

relat

New member
hello,my brother has cf,he was diagnosed at 20.He had pains on the belly as a child and almost ever.He was at the hospital where he had some health testing.A doctor said that there is a shadow on his lungs,and wrote on the paper:cystic fibrosis?we read it and said what is this?He reccomended further testing(dna and sweat test).Before this,years before a nurse told us that his fingers are strange and it shows a lung problem,so we had to check it,she said.We didnt pay much attention.At this time,my brother was about to go to the army and he went although he had cf,we didnt know much then.He stopped army 10 months after because he had fevers,etc and was exhausted because of army.That's all.


relat,27,having brother w/cf,26 yrs old.
 
R

relat

New member
hello,my brother has cf,he was diagnosed at 20.He had pains on the belly as a child and almost ever.He was at the hospital where he had some health testing.A doctor said that there is a shadow on his lungs,and wrote on the paper:cystic fibrosis?we read it and said what is this?He reccomended further testing(dna and sweat test).Before this,years before a nurse told us that his fingers are strange and it shows a lung problem,so we had to check it,she said.We didnt pay much attention.At this time,my brother was about to go to the army and he went although he had cf,we didnt know much then.He stopped army 10 months after because he had fevers,etc and was exhausted because of army.That's all.


relat,27,having brother w/cf,26 yrs old.
 
R

relat

New member
hello,my brother has cf,he was diagnosed at 20.He had pains on the belly as a child and almost ever.He was at the hospital where he had some health testing.A doctor said that there is a shadow on his lungs,and wrote on the paper:cystic fibrosis?we read it and said what is this?He reccomended further testing(dna and sweat test).Before this,years before a nurse told us that his fingers are strange and it shows a lung problem,so we had to check it,she said.We didnt pay much attention.At this time,my brother was about to go to the army and he went although he had cf,we didnt know much then.He stopped army 10 months after because he had fevers,etc and was exhausted because of army.That's all.


relat,27,having brother w/cf,26 yrs old.
 
J

JustDucky

New member
I was a late diagnosis too...a little over a year ago at 33. Actually, my primary doc suggested it after I started culturing bugs that aren't in "normal" folks- cepacia. Prior to that infamous culture almost 2 years ago, I had cultured PA and was in the hospital alot for my ashtma and pneumonia. I think what took them so long was the fact that I have other co existing diseases that affected my lungs, such a myopathy that affected my diaphragm, restricted my ability to breathe, I live on a vent so alot of docs blamed the other bugs on the vent, but the cepacia was a huge clue. The myopathy also affected my ability to walk. What was also a red flag was the fact that I dropped weight so fast...I was quite heavy at one time, well over a 100 lbs overweight and then the weight fell off, I am actually at a normal weight now for my height, take enzymes (thank GOD!) and can eat anything I want. Before enzymes, eating anything fatty was excruciating and caused my stools to stink more and float as well as have profuse diarrhea. Tests showed pancreatic insufficiency...another piece of the puzzle. Now I can enjoy fried chicken and my favorite, Ben and Jerry's ice cream!LOL! I was finally sweat tested at my doc's insistance- I was borderline twice, 49 and 50 with chloride being higher than the sodium, another red flag. Finally was diagnosed after all of my tests. I now have diabetes to boot and culture cepacia, PA, steno, staph...all of my friends! I am definitely atypical by any definition, the docs call me medicallly complex...heehee (been called everything from being a nightmare, mystery, a medical conundrum, an "elusive butterfly"...but things have finally gotten to a point where docs can put a finger on things) hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
I was a late diagnosis too...a little over a year ago at 33. Actually, my primary doc suggested it after I started culturing bugs that aren't in "normal" folks- cepacia. Prior to that infamous culture almost 2 years ago, I had cultured PA and was in the hospital alot for my ashtma and pneumonia. I think what took them so long was the fact that I have other co existing diseases that affected my lungs, such a myopathy that affected my diaphragm, restricted my ability to breathe, I live on a vent so alot of docs blamed the other bugs on the vent, but the cepacia was a huge clue. The myopathy also affected my ability to walk. What was also a red flag was the fact that I dropped weight so fast...I was quite heavy at one time, well over a 100 lbs overweight and then the weight fell off, I am actually at a normal weight now for my height, take enzymes (thank GOD!) and can eat anything I want. Before enzymes, eating anything fatty was excruciating and caused my stools to stink more and float as well as have profuse diarrhea. Tests showed pancreatic insufficiency...another piece of the puzzle. Now I can enjoy fried chicken and my favorite, Ben and Jerry's ice cream!LOL! I was finally sweat tested at my doc's insistance- I was borderline twice, 49 and 50 with chloride being higher than the sodium, another red flag. Finally was diagnosed after all of my tests. I now have diabetes to boot and culture cepacia, PA, steno, staph...all of my friends! I am definitely atypical by any definition, the docs call me medicallly complex...heehee (been called everything from being a nightmare, mystery, a medical conundrum, an "elusive butterfly"...but things have finally gotten to a point where docs can put a finger on things) hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
I was a late diagnosis too...a little over a year ago at 33. Actually, my primary doc suggested it after I started culturing bugs that aren't in "normal" folks- cepacia. Prior to that infamous culture almost 2 years ago, I had cultured PA and was in the hospital alot for my ashtma and pneumonia. I think what took them so long was the fact that I have other co existing diseases that affected my lungs, such a myopathy that affected my diaphragm, restricted my ability to breathe, I live on a vent so alot of docs blamed the other bugs on the vent, but the cepacia was a huge clue. The myopathy also affected my ability to walk. What was also a red flag was the fact that I dropped weight so fast...I was quite heavy at one time, well over a 100 lbs overweight and then the weight fell off, I am actually at a normal weight now for my height, take enzymes (thank GOD!) and can eat anything I want. Before enzymes, eating anything fatty was excruciating and caused my stools to stink more and float as well as have profuse diarrhea. Tests showed pancreatic insufficiency...another piece of the puzzle. Now I can enjoy fried chicken and my favorite, Ben and Jerry's ice cream!LOL! I was finally sweat tested at my doc's insistance- I was borderline twice, 49 and 50 with chloride being higher than the sodium, another red flag. Finally was diagnosed after all of my tests. I now have diabetes to boot and culture cepacia, PA, steno, staph...all of my friends! I am definitely atypical by any definition, the docs call me medicallly complex...heehee (been called everything from being a nightmare, mystery, a medical conundrum, an "elusive butterfly"...but things have finally gotten to a point where docs can put a finger on things) hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
D

dacraven

New member
i am 22 and was told there is a very high chance i have CF i had bad asthma up until the age of 13 but that went away, then in june 2006 i started coughing, i went to the doctors he said it was the flu, it didnt go away so i went back and he said he would forward me to a specialist, he did and i was told i had phnumonia (sorry for the spelling ^^) then a couple of weeks later they said a bad chect infection, then possible cancer, then a bad chest infection and THEN phnumonia again, now 7 months later they realised that my lungs were full of fluid again and the doctor said its might be CF, this linked with the fact that me and my fiance cant have kids, the asthma, constant chest infections, constant colds and every other illness under the sun since the age of 15 leads me to think that i have got CF

oh and i did that lick yer skin thing and it is salty

on the other hand im glad i cant have kids, i wouldnt like them to have my life
 
D

dacraven

New member
i am 22 and was told there is a very high chance i have CF i had bad asthma up until the age of 13 but that went away, then in june 2006 i started coughing, i went to the doctors he said it was the flu, it didnt go away so i went back and he said he would forward me to a specialist, he did and i was told i had phnumonia (sorry for the spelling ^^) then a couple of weeks later they said a bad chect infection, then possible cancer, then a bad chest infection and THEN phnumonia again, now 7 months later they realised that my lungs were full of fluid again and the doctor said its might be CF, this linked with the fact that me and my fiance cant have kids, the asthma, constant chest infections, constant colds and every other illness under the sun since the age of 15 leads me to think that i have got CF

oh and i did that lick yer skin thing and it is salty

on the other hand im glad i cant have kids, i wouldnt like them to have my life
 
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