Being diagnosed with cf at a late age

[snowwisher]

Hi I have not been on here in a while.Im a mother of a young adult cfer.My questions is about my husband today though.He went to thge doc for a thyroid test but while he was there he ask the doc if he could help with all the mucus he has and they did a pft about 8 times and he could not do them(actually it was pretty bad)they gave him a treatment and he still just barely made it and when the doc found out there was cf in the family he grew concerned and order a chest xray and wants him to have the sweat test.My questions is has anyone ever heard of a person in the mid 40s being diagnosed with cf?Pretty scared right now.Patty

 

[snowwisher]

Hi I have not been on here in a while.Im a mother of a young adult cfer.My questions is about my husband today though.He went to thge doc for a thyroid test but while he was there he ask the doc if he could help with all the mucus he has and they did a pft about 8 times and he could not do them(actually it was pretty bad)they gave him a treatment and he still just barely made it and when the doc found out there was cf in the family he grew concerned and order a chest xray and wants him to have the sweat test.My questions is has anyone ever heard of a person in the mid 40s being diagnosed with cf?Pretty scared right now.Patty

 

[snowwisher]

Hi I have not been on here in a while.Im a mother of a young adult cfer.My questions is about my husband today though.He went to thge doc for a thyroid test but while he was there he ask the doc if he could help with all the mucus he has and they did a pft about 8 times and he could not do them(actually it was pretty bad)they gave him a treatment and he still just barely made it and when the doc found out there was cf in the family he grew concerned and order a chest xray and wants him to have the sweat test.My questions is has anyone ever heard of a person in the mid 40s being diagnosed with cf?Pretty scared right now.Patty

 

[JORDYSMOM]

Hi Patty. I'm sorry your husband is having trouble.

To answer your question, yes. We actually have quite a few members here who were dx as adults. Some even in their 50's & 60's. CF is such a complex disease, and it affects every patient differently. My son wasn't dx until he was 15, and then only by accident really.

I hope your husband's doctors can figure out what is going on with him. I do think it's great that he has an open minded doc who will even suggest the testing. Most would completely dismiss it. I know you're scared, but as you know, if he does have CF, getting the proper care can make a huge difference. Let us know what happens.

Stacey

 

[JORDYSMOM]

Hi Patty. I'm sorry your husband is having trouble.

To answer your question, yes. We actually have quite a few members here who were dx as adults. Some even in their 50's & 60's. CF is such a complex disease, and it affects every patient differently. My son wasn't dx until he was 15, and then only by accident really.

I hope your husband's doctors can figure out what is going on with him. I do think it's great that he has an open minded doc who will even suggest the testing. Most would completely dismiss it. I know you're scared, but as you know, if he does have CF, getting the proper care can make a huge difference. Let us know what happens.

Stacey

 

[JORDYSMOM]

Hi Patty. I'm sorry your husband is having trouble.
<br />
<br />To answer your question, yes. We actually have quite a few members here who were dx as adults. Some even in their 50's & 60's. CF is such a complex disease, and it affects every patient differently. My son wasn't dx until he was 15, and then only by accident really.
<br />
<br />I hope your husband's doctors can figure out what is going on with him. I do think it's great that he has an open minded doc who will even suggest the testing. Most would completely dismiss it. I know you're scared, but as you know, if he does have CF, getting the proper care can make a huge difference. Let us know what happens.
<br />
<br />Stacey

 

[BaylorCrew07]

I'm sorry for everything you are dealing with; I can't imagine. I don't recall their username, but I think someone on these forums was diagnosed in their 40's. I know we have some people diagnosed in their early 30's, and I was diagnosed at age 20. It's definitely possible, but hopefully your husband does not have CF.

Regardless of sweat test results, I would push for the Ambry genetic testing to be done that tests for all 1300+ mutations...it's the only way to have 100% definitive answers.

Best of luck

 

[BaylorCrew07]

I'm sorry for everything you are dealing with; I can't imagine. I don't recall their username, but I think someone on these forums was diagnosed in their 40's. I know we have some people diagnosed in their early 30's, and I was diagnosed at age 20. It's definitely possible, but hopefully your husband does not have CF.

Regardless of sweat test results, I would push for the Ambry genetic testing to be done that tests for all 1300+ mutations...it's the only way to have 100% definitive answers.

Best of luck

 

[BaylorCrew07]

I'm sorry for everything you are dealing with; I can't imagine. I don't recall their username, but I think someone on these forums was diagnosed in their 40's. I know we have some people diagnosed in their early 30's, and I was diagnosed at age 20. It's definitely possible, but hopefully your husband does not have CF.
<br />
<br />Regardless of sweat test results, I would push for the Ambry genetic testing to be done that tests for all 1300+ mutations...it's the only way to have 100% definitive answers.
<br />
<br />Best of luck

 

[JustDucky]

I was dx'd at 33 yrs old after years of respiratory problems and finally digestive issues were the final red flags. I think that more of us are being diagnosed as adults because CF has such a large spectrum...You have the classic CF'ers who at birth or infancy, exhibit signs right off the bat, usually digestive or failure to thrive along with lung issues. Then there are some of us who get such diagnosis as asthma, frequent bronchitis throughout our lives until enough lung issues are present to make the doctor or us look into other possibilities. Trust me, CF was the last thing I was thinking about when my doctor looked me in the eye and told me that I needed to be tested for it. I always thought babies or young children were diagnosed until I came to this site and saw that I was not as nearly alone as I thought...there are many others here who have had a late diagnosis. I will keep your husband in my thoughts, I sure hope he gets answers either way. If it turns out to be CF, then he can get the right treatment. I know I feel better now that I have been on the correct regimine for the last 5 years, I get aggressive treatment for exacerbations, chest physio etc....And the proper nutrition to boot.

Hugs, Jenn

 

[JustDucky]

I was dx'd at 33 yrs old after years of respiratory problems and finally digestive issues were the final red flags. I think that more of us are being diagnosed as adults because CF has such a large spectrum...You have the classic CF'ers who at birth or infancy, exhibit signs right off the bat, usually digestive or failure to thrive along with lung issues. Then there are some of us who get such diagnosis as asthma, frequent bronchitis throughout our lives until enough lung issues are present to make the doctor or us look into other possibilities. Trust me, CF was the last thing I was thinking about when my doctor looked me in the eye and told me that I needed to be tested for it. I always thought babies or young children were diagnosed until I came to this site and saw that I was not as nearly alone as I thought...there are many others here who have had a late diagnosis. I will keep your husband in my thoughts, I sure hope he gets answers either way. If it turns out to be CF, then he can get the right treatment. I know I feel better now that I have been on the correct regimine for the last 5 years, I get aggressive treatment for exacerbations, chest physio etc....And the proper nutrition to boot.

Hugs, Jenn

 

[JustDucky]

I was dx'd at 33 yrs old after years of respiratory problems and finally digestive issues were the final red flags. I think that more of us are being diagnosed as adults because CF has such a large spectrum...You have the classic CF'ers who at birth or infancy, exhibit signs right off the bat, usually digestive or failure to thrive along with lung issues. Then there are some of us who get such diagnosis as asthma, frequent bronchitis throughout our lives until enough lung issues are present to make the doctor or us look into other possibilities. Trust me, CF was the last thing I was thinking about when my doctor looked me in the eye and told me that I needed to be tested for it. I always thought babies or young children were diagnosed until I came to this site and saw that I was not as nearly alone as I thought...there are many others here who have had a late diagnosis. I will keep your husband in my thoughts, I sure hope he gets answers either way. If it turns out to be CF, then he can get the right treatment. I know I feel better now that I have been on the correct regimine for the last 5 years, I get aggressive treatment for exacerbations, chest physio etc....And the proper nutrition to boot.
<br />
<br />Hugs, Jenn