Get Genitic Tests!

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stephen

Guest
The Sweat test may not be definitive!

I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.

Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!

I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!
 
S

stephen

Guest
The Sweat test may not be definitive!

I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.

Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!

I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!
 
S

stephen

Guest
The Sweat test may not be definitive!

I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.

Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!

I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!
 
S

stephen

Guest
The Sweat test may not be definitive!

I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.

Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!

I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!
 
S

stephen

Guest
The Sweat test may not be definitive!
<br />
<br />I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.
<br />
<br />Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!
<br />
<br />I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!
 
A

AnnieT

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>stephen</b></i>

The Sweat test may not be definitive!



I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.



Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!



I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!</end quote></div>

You mention NY hospitals. Was one of them Columbian Presbyterian? I had my sweat test done there and it was negative.
 
A

AnnieT

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>stephen</b></i>

The Sweat test may not be definitive!



I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.



Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!



I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!</end quote>

You mention NY hospitals. Was one of them Columbian Presbyterian? I had my sweat test done there and it was negative.
 
A

AnnieT

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>stephen</b></i>
<br />
<br />The Sweat test may not be definitive!
<br />
<br />
<br />
<br />I am 68 and have CF. Over the past years, multiple sweat tests, with multiple doctors, at multiple NY hospitals always came up negative. My numbers were around 15 - 20.
<br />
<br />
<br />
<br />Five years ago, because of increasing bleeding, I went to National Jewish in Denver to get their advice concerning surgery. They conducted Genetic tests and found that I had two CF mutations. That diagnosis opened the doors for me to get drugs prescribed for CF: TOBI, Pulmozyme, Astreanom (Cayston). What a difference in my quality of life!
<br />
<br />
<br />
<br />I urge everyone who suspects CF not to rely on the Sweat Test alone. Get Genetic tests!</end quote>
<br />
<br />You mention NY hospitals. Was one of them Columbian Presbyterian? I had my sweat test done there and it was negative.
 
J

jmom

New member
So, so, so sorry you've been through so much that could have been prevented! May I ask what kind of bleeding? My daughter is waiting on a genetic test and has had three significant episodes of GI bleeding. Is this part of the CF profile? Best wishes to you, and again, so sorry it took so long to get the help you need.
 
J

jmom

New member
So, so, so sorry you've been through so much that could have been prevented! May I ask what kind of bleeding? My daughter is waiting on a genetic test and has had three significant episodes of GI bleeding. Is this part of the CF profile? Best wishes to you, and again, so sorry it took so long to get the help you need.
 
J

jmom

New member
So, so, so sorry you've been through so much that could have been prevented! May I ask what kind of bleeding? My daughter is waiting on a genetic test and has had three significant episodes of GI bleeding. Is this part of the CF profile? Best wishes to you, and again, so sorry it took so long to get the help you need.
 
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