Diagnosed at age 50

xin · Jun 23, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: LTA

 Everything
I have read about my mutations is medical jargon and really i don't know
anything about it. If anyone can help, please do.

Thanks,
I have alot to read here.</end quote> I can't help, per se, but I can tell you that you and I share the same (known) mutations associated with CF. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Like you, I'm pancreatic sufficient. I'm 34, and I was diagnosed earlier this year. The only reason it was discovered was wife and I were having trouble making a baby. My urologist ordered test after test (all of which came back perfect), until we got to the CF test - voila! (I've got a whole thread on this, somewhere under the Newly Diagnosed section.) Although it's a shock, try not to be scared. Be thankful that you have a diagnosis, and that you can work with (competent) CF medical professionals going forward. Exercise the s--- out of your body, and don't give up. Buy yourself all the time you can by eating well and exercising often.

vivsmom · Jun 23, 2011

Hi Lisa,<div>I just saw this where you asked about sputum sample. You will be asked to supply one and yes, it is very difficult to me to do it, too. I do cough up mucus but not "on demand". They may give you an inhaled dose of Albuterol or similar to help loosen the mucus and hopefully, make it easier for you to expel. I find it is easier to get a sample cup from them and do it at home - first thing in the morning - then drop it off to a lab. A sample is a must - that is how they found the bacteria in my lungs - can't recall the name but it is highly resistant to antibiotics and this led my doctor to do the genetics test.</div><div>Karen</div>

vivsmom · Jun 23, 2011

Hi Lisa,I just saw this where you asked about sputum sample. You will be asked to supply one and yes, it is very difficult to me to do it, too. I do cough up mucus but not "on demand". They may give you an inhaled dose of Albuterol or similar to help loosen the mucus and hopefully, make it easier for you to expel. I find it is easier to get a sample cup from them and do it at home - first thing in the morning - then drop it off to a lab. A sample is a must - that is how they found the bacteria in my lungs - can't recall the name but it is highly resistant to antibiotics and this led my doctor to do the genetics test.Karen

vivsmom · Jun 23, 2011

Hi Lisa,I just saw this where you asked about sputum sample. You will be asked to supply one and yes, it is very difficult to me to do it, too. I do cough up mucus but not "on demand". They may give you an inhaled dose of Albuterol or similar to help loosen the mucus and hopefully, make it easier for you to expel. I find it is easier to get a sample cup from them and do it at home - first thing in the morning - then drop it off to a lab. A sample is a must - that is how they found the bacteria in my lungs - can't recall the name but it is highly resistant to antibiotics and this led my doctor to do the genetics test.Karen

hmw · Jun 24, 2011

Some of the kids cannot cough up mucus very well either. On occasion they are given a dose of hypertonic saline to neb, which induces coughing and bringing up sputum. They also (more commonly) have the kids huff and cough a few times and then without swallowing swab as far back in the throat as possible. A throat swab is not ideal, but is better than nothing and can help.

My daughter has a medic alert, but she also has another severe health condition in addition to her CF.

hmw · Jun 24, 2011

Some of the kids cannot cough up mucus very well either. On occasion they are given a dose of hypertonic saline to neb, which induces coughing and bringing up sputum. They also (more commonly) have the kids huff and cough a few times and then without swallowing swab as far back in the throat as possible. A throat swab is not ideal, but is better than nothing and can help.

My daughter has a medic alert, but she also has another severe health condition in addition to her CF.

hmw · Jun 24, 2011

Some of the kids cannot cough up mucus very well either. On occasion they are given a dose of hypertonic saline to neb, which induces coughing and bringing up sputum. They also (more commonly) have the kids huff and cough a few times and then without swallowing swab as far back in the throat as possible. A throat swab is not ideal, but is better than nothing and can help.
 
 My daughter has a medic alert, but she also has another severe health condition in addition to her CF.

Simba15 · Jun 29, 2011

I have never been able to cough up anything - ever

Simba15 · Jun 29, 2011

I have never been able to cough up anything - ever

Simba15 · Jun 29, 2011

I have never been able to cough up anything - ever

hmw · Jul 1, 2011

I'd ask for them to do at least a throat swab then. It's worth a try. It will often turn up things like pseudomonas or other bugs in asymptomatic children who never cough up sputum, so it's worth a try! Worst it can do is come back normal flora and you are no worse off than you are right now, but it may yield valuable information.

I'd also expect them to perform PFT's to see how you are doing there.

hmw · Jul 1, 2011

I'd ask for them to do at least a throat swab then. It's worth a try. It will often turn up things like pseudomonas or other bugs in asymptomatic children who never cough up sputum, so it's worth a try! Worst it can do is come back normal flora and you are no worse off than you are right now, but it may yield valuable information.

I'd also expect them to perform PFT's to see how you are doing there.

hmw · Jul 1, 2011

I'd ask for them to do at least a throat swab then. It's worth a try. It will often turn up things like pseudomonas or other bugs in asymptomatic children who never cough up sputum, so it's worth a try! Worst it can do is come back normal flora and you are no worse off than you are right now, but it may yield valuable information.

I'd also expect them to perform PFT's to see how you are doing there.

Simba15 · Jul 18, 2011

i have learned more from all of you than from embry. thanks for all your posts!

Simba15 · Jul 18, 2011

i have learned more from all of you than from embry. thanks for all your posts!

Simba15 · Jul 18, 2011

i have learned more from all of you than from embry. thanks for all your posts!

gunelle · Jul 21, 2011

I was also diagnosed as an adult, at 32, after being sickly most of my life. I agree as others have said, that I am relieved/happy to be diagnosed. I have had comments that people say they are sorry about my diagnosis, but I am not sorry, I am relived. I am sorry for people/children with more severe cases than mine. I have been like I am all my life, and know nothing else, so it's nice to have a diagnosis for what I have been dealing with my whole life.
 
Ps. It's alway nice to read about people who are of a "high" age, with CF <img src="i/expressions/face-icon-small-blush.gif" border="0">)

gunelle · Jul 21, 2011

I was also diagnosed as an adult, at 32, after being sickly most of my life. I agree as others have said, that I am relieved/happy to be diagnosed. I have had comments that people say they are sorry about my diagnosis, but I am not sorry, I am relived. I am sorry for people/children with more severe cases than mine. I have been like I am all my life, and know nothing else, so it's nice to have a diagnosis for what I have been dealing with my whole life.

Ps. It's alway nice to read about people who are of a "high" age, with CF <img src="i/expressions/face-icon-small-blush.gif" border="0">)

gunelle · Jul 21, 2011

I was also diagnosed as an adult, at 32, after being sickly most of my life. I agree as others have said, that I am relieved/happy to be diagnosed. I have had comments that people say they are sorry about my diagnosis, but I am not sorry, I am relived. I am sorry for people/children with more severe cases than mine. I have been like I am all my life, and know nothing else, so it's nice to have a diagnosis for what I have been dealing with my whole life.

Ps. It's alway nice to read about people who are of a "high" age, with CF <img src="i/expressions/face-icon-small-blush.gif" border="0">)

kgfrompa · Jul 21, 2011

I was also DX at the age of 50 i have always been very sick with Bronchitis and blebs on my lung. I have had 19 chest tubes and my energy is liminted.Welcome and i hope you find a place that gives you support and answers with us here.

Diagnosed at age 50

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