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Genetic test

sheree

New member
Hi, I am new here I am 44 years old and the doctor suspects from my symptoms that I may have mild cf. I had breathing problems as a child, they seem to get better until I was a teenager and then I got bronchitis a few times a year that would last months. My gall bladder was removed when I was 24 and I was dxd with spastic colon and acid reflux. And now I have suspected chronic pancreatitis with exocrine insufficiency. I had a terrible respiratory infection last Feb. and the cough lasted until June.

Anyway they did the genetic test for cystic fibrosis and hereditary pancreatitis on November 30th. I called about a week after the test and they said that part of the results were back but part of them were pending and she would send the chart to the nurse to call me. When the nurse called she said the results were not in yet. They are still not in on Dec. 23 How long does it take for this test? Why won't they tell me about the results that are in? This waiting is very hard.

I am pretty frightened and looking for answers. My sister also has chronic digestive problems and COPD and Asthma and has had pneumonia 3 times in the last two years. She catches everything that comes in the house. She is afraid to go out.
 

sheree

New member
Hi, I am new here I am 44 years old and the doctor suspects from my symptoms that I may have mild cf. I had breathing problems as a child, they seem to get better until I was a teenager and then I got bronchitis a few times a year that would last months. My gall bladder was removed when I was 24 and I was dxd with spastic colon and acid reflux. And now I have suspected chronic pancreatitis with exocrine insufficiency. I had a terrible respiratory infection last Feb. and the cough lasted until June.

Anyway they did the genetic test for cystic fibrosis and hereditary pancreatitis on November 30th. I called about a week after the test and they said that part of the results were back but part of them were pending and she would send the chart to the nurse to call me. When the nurse called she said the results were not in yet. They are still not in on Dec. 23 How long does it take for this test? Why won't they tell me about the results that are in? This waiting is very hard.

I am pretty frightened and looking for answers. My sister also has chronic digestive problems and COPD and Asthma and has had pneumonia 3 times in the last two years. She catches everything that comes in the house. She is afraid to go out.
 

sheree

New member
Hi, I am new here I am 44 years old and the doctor suspects from my symptoms that I may have mild cf. I had breathing problems as a child, they seem to get better until I was a teenager and then I got bronchitis a few times a year that would last months. My gall bladder was removed when I was 24 and I was dxd with spastic colon and acid reflux. And now I have suspected chronic pancreatitis with exocrine insufficiency. I had a terrible respiratory infection last Feb. and the cough lasted until June.
<br />
<br />Anyway they did the genetic test for cystic fibrosis and hereditary pancreatitis on November 30th. I called about a week after the test and they said that part of the results were back but part of them were pending and she would send the chart to the nurse to call me. When the nurse called she said the results were not in yet. They are still not in on Dec. 23 How long does it take for this test? Why won't they tell me about the results that are in? This waiting is very hard.
<br />
<br />I am pretty frightened and looking for answers. My sister also has chronic digestive problems and COPD and Asthma and has had pneumonia 3 times in the last two years. She catches everything that comes in the house. She is afraid to go out.
 

Shelbyville

New member
Sheree:

Well you seem to be starting to uncover the route cause of your health problems. As far as MILD CF yes it is a label put on some of the varieties (1600) to date so more digging will get to the bottom of the issues. Ya really need to study the forum and find a clinic as your support net work. Some areas of the country are better for CF care. Genetic reports help provide direction but are not the end all answer. Good luck keep digging this forum is a wealth of knowledge with many caring souls.

Best Regards, Steve
 

Shelbyville

New member
Sheree:

Well you seem to be starting to uncover the route cause of your health problems. As far as MILD CF yes it is a label put on some of the varieties (1600) to date so more digging will get to the bottom of the issues. Ya really need to study the forum and find a clinic as your support net work. Some areas of the country are better for CF care. Genetic reports help provide direction but are not the end all answer. Good luck keep digging this forum is a wealth of knowledge with many caring souls.

Best Regards, Steve
 

Shelbyville

New member
Sheree:
<br />
<br />Well you seem to be starting to uncover the route cause of your health problems. As far as MILD CF yes it is a label put on some of the varieties (1600) to date so more digging will get to the bottom of the issues. Ya really need to study the forum and find a clinic as your support net work. Some areas of the country are better for CF care. Genetic reports help provide direction but are not the end all answer. Good luck keep digging this forum is a wealth of knowledge with many caring souls.
<br />
<br />Best Regards, Steve
 

chrissyd

New member
They probably want all of the results so they can look at the big picture before talking with you. I know that its frustraiting but from their point of view it will help explain thing so that they can explain it to you. I was diagnosed at 21, after years of being told I had asthma and chronic bonchitis. (Gall bladder out @ 16 with bouts of pancreatis as well) I went to my genetics doctor a few months before my wedding, and told them I did not want to cough my way down the isle. Needless to say I got "the call" on my honeymoon...when they wouldn't discuss it on the phone I *knew* it had to be positive...

My doctor says there is no mild CF, just mild symptoms--so you'll find while reading on this site there are many different ways to look at it. The most important thing is to be proactive. I hope your test comes back negative, but if it doesn't I'm glad you found this site.


<img src="i/expressions/rose.gif" border="0">
 

chrissyd

New member
They probably want all of the results so they can look at the big picture before talking with you. I know that its frustraiting but from their point of view it will help explain thing so that they can explain it to you. I was diagnosed at 21, after years of being told I had asthma and chronic bonchitis. (Gall bladder out @ 16 with bouts of pancreatis as well) I went to my genetics doctor a few months before my wedding, and told them I did not want to cough my way down the isle. Needless to say I got "the call" on my honeymoon...when they wouldn't discuss it on the phone I *knew* it had to be positive...

My doctor says there is no mild CF, just mild symptoms--so you'll find while reading on this site there are many different ways to look at it. The most important thing is to be proactive. I hope your test comes back negative, but if it doesn't I'm glad you found this site.


<img src="i/expressions/rose.gif" border="0">
 

chrissyd

New member
They probably want all of the results so they can look at the big picture before talking with you. I know that its frustraiting but from their point of view it will help explain thing so that they can explain it to you. I was diagnosed at 21, after years of being told I had asthma and chronic bonchitis. (Gall bladder out @ 16 with bouts of pancreatis as well) I went to my genetics doctor a few months before my wedding, and told them I did not want to cough my way down the isle. Needless to say I got "the call" on my honeymoon...when they wouldn't discuss it on the phone I *knew* it had to be positive...
<br />
<br />My doctor says there is no mild CF, just mild symptoms--so you'll find while reading on this site there are many different ways to look at it. The most important thing is to be proactive. I hope your test comes back negative, but if it doesn't I'm glad you found this site.
<br />
<br />
<br /><img src="i/expressions/rose.gif" border="0">
 

sheree

New member
Thank you! This is a wonderful site. I have been looking through post here since they decided to test me and I have learned a lot. My doctor is out of town so I am hoping to get answers next week. I pray everyone has a wonderful new year, God bless.

Sheree
 

sheree

New member
Thank you! This is a wonderful site. I have been looking through post here since they decided to test me and I have learned a lot. My doctor is out of town so I am hoping to get answers next week. I pray everyone has a wonderful new year, God bless.

Sheree
 

sheree

New member
Thank you! This is a wonderful site. I have been looking through post here since they decided to test me and I have learned a lot. My doctor is out of town so I am hoping to get answers next week. I pray everyone has a wonderful new year, God bless.
<br />
<br />Sheree
 

Printer

Active member
Sheree:

I was dx at age 47 (after 10 years of hospitalization with pancreatitis).

Please get yourself to an ADULT CF CENTER for dx. Most Doctors don't know enough about CF to either dx or treat it.

Good luck,

Bill
 

Printer

Active member
Sheree:

I was dx at age 47 (after 10 years of hospitalization with pancreatitis).

Please get yourself to an ADULT CF CENTER for dx. Most Doctors don't know enough about CF to either dx or treat it.

Good luck,

Bill
 

Printer

Active member
Sheree:
<br />
<br />I was dx at age 47 (after 10 years of hospitalization with pancreatitis).
<br />
<br />Please get yourself to an ADULT CF CENTER for dx. Most Doctors don't know enough about CF to either dx or treat it.
<br />
<br />Good luck,
<br />
<br />Bill
 
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