Diagnosed as an adult

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sjzbell

New member
Hello!

Ok, I feel really weird asking this, but I'm gonna. <img title="Tongue out" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-tongue-out.gif" alt="Tongue out" border="0" /> I would just like some input from anyone who has been diagnosed w/ CF as an adult, especially anyone that maybe has really never thought that CF could've been what was the cause of your problems.

I have an 11 y/o son diagnosed @ 18 mos. So I know the CF ropes--so to speak. When my son was diagnosed, it was a complete shock as we have no one in either of our families that has been diagnosed w/ CF. We had our older son tested & he's not even a carrier. Obviously, we both are, but never had ourselves tested because we just figured it was an automatic that we were carriers, so what else was there to know....right?? But it still haunts me as to whether <span style="text-decoration: underline;">I may have CF <em>myself</em> as I seem to get upper respiratory & chest illnesses just about as often as my CF son.......I always have growing up. Overall, he's pretty "mild" & usually can conquer his exacerbations w/ antibiotics. Maybe I'm fooling myself. He does okay @ gaining weight & I was the same until I had kids. Now, I don't struggle in that department at all (unfortunately). <img src="i/expressions/face-icon-small-smile.gif" border="0"> And I notice the older I get the more I cough.

I know I should just get tested, but it's a lot of $$ for probably a negative. Plus, my son had 3 sweat tests--2 borderline & 1 negative, so I don't believe in that dumb thing. They found his CF in a blood test way after the fact when testing for some other GI & allergy stuff.

Anyway, I was just curious for input. Besides the obvious "just go get tested" answer. Thanks for any insight.
 
S

sjzbell

New member
Hello!

Ok, I feel really weird asking this, but I'm gonna. <img title="Tongue out" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-tongue-out.gif" alt="Tongue out" border="0" /> I would just like some input from anyone who has been diagnosed w/ CF as an adult, especially anyone that maybe has really never thought that CF could've been what was the cause of your problems.

I have an 11 y/o son diagnosed @ 18 mos. So I know the CF ropes--so to speak. When my son was diagnosed, it was a complete shock as we have no one in either of our families that has been diagnosed w/ CF. We had our older son tested & he's not even a carrier. Obviously, we both are, but never had ourselves tested because we just figured it was an automatic that we were carriers, so what else was there to know....right?? But it still haunts me as to whether <span style="text-decoration: underline;">I may have CF <em>myself</em> as I seem to get upper respiratory & chest illnesses just about as often as my CF son.......I always have growing up. Overall, he's pretty "mild" & usually can conquer his exacerbations w/ antibiotics. Maybe I'm fooling myself. He does okay @ gaining weight & I was the same until I had kids. Now, I don't struggle in that department at all (unfortunately). <img src="i/expressions/face-icon-small-smile.gif" border="0"> And I notice the older I get the more I cough.

I know I should just get tested, but it's a lot of $$ for probably a negative. Plus, my son had 3 sweat tests--2 borderline & 1 negative, so I don't believe in that dumb thing. They found his CF in a blood test way after the fact when testing for some other GI & allergy stuff.

Anyway, I was just curious for input. Besides the obvious "just go get tested" answer. Thanks for any insight.
 
P

Printer

Active member
Shannon:

I was 47 at dx. While I had lung issues growing up my major issues started at age 20. Sub total gastroectomy followed by many years of pancretitis. My two sweat tests were "borderline positive".

I believe that my Dad had CF, but there is nobody else on either side of my family who even shows symptoms.

Cf does damage to your lungs everyday and it dosen't care if you have been tested. You could be putting your life at peril but I won't say the obvious.

Bill
 
P

Printer

Active member
Shannon:

I was 47 at dx. While I had lung issues growing up my major issues started at age 20. Sub total gastroectomy followed by many years of pancretitis. My two sweat tests were "borderline positive".

I believe that my Dad had CF, but there is nobody else on either side of my family who even shows symptoms.

Cf does damage to your lungs everyday and it dosen't care if you have been tested. You could be putting your life at peril but I won't say the obvious.

Bill
 
V

vivsmom

New member
I was diagnosed last year at age 55. I had lung issues all my life and was diagnosed with Bronchiectasis when I was about 22. I am pancreatic sufficient so my pulmonary doc never thought to have me tested. It was only until last year after a few years of "going downhill" and being hospitalized that my new pulmonary doc (my previous one passed away 5 yrs. ago) thought to do a gene map. Growing up I was always pretty active, skiing, bicycling, etc but as I aged I started to be more out of breath, more severe infections, etc. You should try to have your genes mapped to see if you can swing it. Once I was diagnosed, it opened a whole new world for me with medications, etc. Although I can't say I am doing better, I do feel I am stable for the time being.
Karen
 
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vivsmom

New member
I was diagnosed last year at age 55. I had lung issues all my life and was diagnosed with Bronchiectasis when I was about 22. I am pancreatic sufficient so my pulmonary doc never thought to have me tested. It was only until last year after a few years of "going downhill" and being hospitalized that my new pulmonary doc (my previous one passed away 5 yrs. ago) thought to do a gene map. Growing up I was always pretty active, skiing, bicycling, etc but as I aged I started to be more out of breath, more severe infections, etc. You should try to have your genes mapped to see if you can swing it. Once I was diagnosed, it opened a whole new world for me with medications, etc. Although I can't say I am doing better, I do feel I am stable for the time being.
Karen
 
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urmysunshine54

Guest
Hi Shannon - I am 57 and was diagnosed with CF about a month ago. While I was constantly getting colds and bronchitis starting in my early 20's, the past five years have been difficult with constant sinusitis and pulmonary problems.Had a couple of sinus surgeries, and always getting nasal polyps, and being hospitalized several times because I couldn't breathe. I saw many different docs over the past five years and had just changed my GP again about three months ago.I landed in the hospital over the holidays and he suggested I have thesweat test...when Igot out of the hospital.It's taken me awhile time to get my arms around CF -as no one in my family has had it. I don't know anyone with CF, and am really trying to educated. ThisCF Forum has been wonderful - I''venever before participated in a chatroom or forum and I come to this site frequently now.I find itsoboth comforting and educational.Thanks so much for asking the question and listening to my story. Susan
 
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urmysunshine54

Guest
Hi Shannon - I am 57 and was diagnosed with CF about a month ago. While I was constantly getting colds and bronchitis starting in my early 20's, the past five years have been difficult with constant sinusitis and pulmonary problems.Had a couple of sinus surgeries, and always getting nasal polyps, and being hospitalized several times because I couldn't breathe. I saw many different docs over the past five years and had just changed my GP again about three months ago.I landed in the hospital over the holidays and he suggested I have thesweat test...when Igot out of the hospital.It's taken me awhile time to get my arms around CF -as no one in my family has had it. I don't know anyone with CF, and am really trying to educated. ThisCF Forum has been wonderful - I''venever before participated in a chatroom or forum and I come to this site frequently now.I find itsoboth comforting and educational.Thanks so much for asking the question and listening to my story. Susan
 
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RachelLynne

New member
Hi! I know how this must feel.I'm young myself,only 19.But all of my life I have been told I have Bronchiectasis and followed CF treatments. When I was about 12,I had my port removed and the doctors basically said I'm better...Sounded like a miracle,but my parents believed them so I came off of treatments. About 16,I became severely ill and they couldn't figure out what was wrong.I kept a respiratory infection,lost almost 100 lbs and they couldn't control my bowels.Just in October they finally diagnosed me with CF after 20 years of being sick.Good Luck to you,and hopefully the doctors can find a underline cause for you as well!
 
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RachelLynne

New member
Hi! I know how this must feel.I'm young myself,only 19.But all of my life I have been told I have Bronchiectasis and followed CF treatments. When I was about 12,I had my port removed and the doctors basically said I'm better...Sounded like a miracle,but my parents believed them so I came off of treatments. About 16,I became severely ill and they couldn't figure out what was wrong.I kept a respiratory infection,lost almost 100 lbs and they couldn't control my bowels.Just in October they finally diagnosed me with CF after 20 years of being sick.Good Luck to you,and hopefully the doctors can find a underline cause for you as well!
 
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Linda2012

New member
Hi Shannon,
If your oldest son is biologically yours and he has two good genes, then it shouldn't be possible for you or your husband to have cf. If you did have cf, you would have two mutated genes...and therefore could only pass a mutated gene to your children... In order for your oldest son to have two good genes, you and your husband both passed him one good gene. Does that make sense?
 
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Linda2012

New member
Hi Shannon,
If your oldest son is biologically yours and he has two good genes, then it shouldn't be possible for you or your husband to have cf. If you did have cf, you would have two mutated genes...and therefore could only pass a mutated gene to your children... In order for your oldest son to have two good genes, you and your husband both passed him one good gene. Does that make sense?
 
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mackenziesmom

New member
Yes. Linda is correct. If one of your biological children isn't even a carrier, there is no way you could have CF yourself. If you had CF, you would always pass on the defective gene to offspring. With someone who is a carrier, there's a 50/50 chance of passing on the gene.
joan
 
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mackenziesmom

New member
Yes. Linda is correct. If one of your biological children isn't even a carrier, there is no way you could have CF yourself. If you had CF, you would always pass on the defective gene to offspring. With someone who is a carrier, there's a 50/50 chance of passing on the gene.
joan
 
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momofsinus

Guest
As for your own symptoms, I have read from others on this website, as well as our own experiences, that
some people who are carriers can have symptoms of CF. Loyola's CF center in Chicago now uses the term
CF metabolic syndrome for patients who have been identified as carriers and show CF-like symptoms. Best of luck.
 
M

momofsinus

Guest
As for your own symptoms, I have read from others on this website, as well as our own experiences, that
some people who are carriers can have symptoms of CF. Loyola's CF center in Chicago now uses the term
CF metabolic syndrome for patients who have been identified as carriers and show CF-like symptoms. Best of luck.
 
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