Questions about adult diagnosis

smccanl · Jul 11, 2008

Hi everyone,

I was just told by my allergist last night that I tested positive for cystic fibrosis (I guess they found 2 gene mutations). I'm 32 and have had chronic sinus issues my whole life, and a cough that was diagnosed about 10 years ago as cough-variant asthma. I was shocked when this doctor suggested CF.

Anyway, I'm confused. My doctor is forwarding my files to a CF doctor in the area, but apparently he said I might not even need to see him if my case is really mild. So what do I need to know? Where do I start? I can't tell whether this diagnosis should have a big impact for me or not. I know I am incredibly lucky to have such a mild expression.

My coughing has gotten a lot worse over the last 5 years. Is this progressive? Will it continue to get worse? I was so hopeful that the allergist would be able to get the cough under control so I could then have surgery for prolapse - I guess that's not in the cards any more <img src="i/expressions/face-icon-small-sad.gif" border="0">

For others with adult diagnosis/ milder CF - could you point me to any books/websites/resources that explain what I'm in for? So much of what I've read (thankfully) doesn't seem to apply to me that I'm really confused.

Thanks for reading,
Sarah

smccanl · Jul 11, 2008

Hi everyone,

I was just told by my allergist last night that I tested positive for cystic fibrosis (I guess they found 2 gene mutations). I'm 32 and have had chronic sinus issues my whole life, and a cough that was diagnosed about 10 years ago as cough-variant asthma. I was shocked when this doctor suggested CF.

Anyway, I'm confused. My doctor is forwarding my files to a CF doctor in the area, but apparently he said I might not even need to see him if my case is really mild. So what do I need to know? Where do I start? I can't tell whether this diagnosis should have a big impact for me or not. I know I am incredibly lucky to have such a mild expression.

My coughing has gotten a lot worse over the last 5 years. Is this progressive? Will it continue to get worse? I was so hopeful that the allergist would be able to get the cough under control so I could then have surgery for prolapse - I guess that's not in the cards any more <img src="i/expressions/face-icon-small-sad.gif" border="0">

For others with adult diagnosis/ milder CF - could you point me to any books/websites/resources that explain what I'm in for? So much of what I've read (thankfully) doesn't seem to apply to me that I'm really confused.

Thanks for reading,
Sarah

smccanl · Jul 11, 2008

Hi everyone,

I was just told by my allergist last night that I tested positive for cystic fibrosis (I guess they found 2 gene mutations). I'm 32 and have had chronic sinus issues my whole life, and a cough that was diagnosed about 10 years ago as cough-variant asthma. I was shocked when this doctor suggested CF.

Anyway, I'm confused. My doctor is forwarding my files to a CF doctor in the area, but apparently he said I might not even need to see him if my case is really mild. So what do I need to know? Where do I start? I can't tell whether this diagnosis should have a big impact for me or not. I know I am incredibly lucky to have such a mild expression.

My coughing has gotten a lot worse over the last 5 years. Is this progressive? Will it continue to get worse? I was so hopeful that the allergist would be able to get the cough under control so I could then have surgery for prolapse - I guess that's not in the cards any more <img src="i/expressions/face-icon-small-sad.gif" border="0">

For others with adult diagnosis/ milder CF - could you point me to any books/websites/resources that explain what I'm in for? So much of what I've read (thankfully) doesn't seem to apply to me that I'm really confused.

Thanks for reading,
Sarah

smccanl · Jul 11, 2008

Hi everyone,

I was just told by my allergist last night that I tested positive for cystic fibrosis (I guess they found 2 gene mutations). I'm 32 and have had chronic sinus issues my whole life, and a cough that was diagnosed about 10 years ago as cough-variant asthma. I was shocked when this doctor suggested CF.

Anyway, I'm confused. My doctor is forwarding my files to a CF doctor in the area, but apparently he said I might not even need to see him if my case is really mild. So what do I need to know? Where do I start? I can't tell whether this diagnosis should have a big impact for me or not. I know I am incredibly lucky to have such a mild expression.

My coughing has gotten a lot worse over the last 5 years. Is this progressive? Will it continue to get worse? I was so hopeful that the allergist would be able to get the cough under control so I could then have surgery for prolapse - I guess that's not in the cards any more <img src="i/expressions/face-icon-small-sad.gif" border="0">

For others with adult diagnosis/ milder CF - could you point me to any books/websites/resources that explain what I'm in for? So much of what I've read (thankfully) doesn't seem to apply to me that I'm really confused.

Thanks for reading,
Sarah

smccanl · Jul 11, 2008

Hi everyone,
 
 I was just told by my allergist last night that I tested positive for cystic fibrosis (I guess they found 2 gene mutations). I'm 32 and have had chronic sinus issues my whole life, and a cough that was diagnosed about 10 years ago as cough-variant asthma. I was shocked when this doctor suggested CF.
 
 Anyway, I'm confused. My doctor is forwarding my files to a CF doctor in the area, but apparently he said I might not even need to see him if my case is really mild. So what do I need to know? Where do I start? I can't tell whether this diagnosis should have a big impact for me or not. I know I am incredibly lucky to have such a mild expression.
 
 My coughing has gotten a lot worse over the last 5 years. Is this progressive? Will it continue to get worse? I was so hopeful that the allergist would be able to get the cough under control so I could then have surgery for prolapse - I guess that's not in the cards any more <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
 For others with adult diagnosis/ milder CF - could you point me to any books/websites/resources that explain what I'm in for? So much of what I've read (thankfully) doesn't seem to apply to me that I'm really confused.
 
 Thanks for reading,
 Sarah

chrissyd · Jul 11, 2008

Sarah,
Welcome to the site. I was diagnosed at 21. When I was younger my parents were told I had asthma and cronic broncitis. Now we know better...

Anyway, CF is progressive. When I was diagnosed I was sick but the CF dr got me better; however it seems that everytime I get sick now, it takes a lot out of me. No matter what your allergist says you should go to a CF clinic and be followed by a CF dr. Even though you have mild symptoms, they could get worse down the road--there really isn't a way to predict. A CF dr will be able to help you stay as healthy as possible.

As for a website to visit; besides this one (which I reccomend highly) there is <a target=_blank class=ftalternatingbarlinklarge href="http://cff.org/">Cystic Fibrosis Foundation</a>

or

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nhlbi.nih.gov/health/dci/Diseases/cf/cf_what.html">What is CF (NIH)</a>

I too saw an allergist for a long time. About 8 years, he never had any answers. So I'm glad yours was on the ball!! Now you can get medical care so that you can stay as healthy as possible.

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

chrissyd · Jul 11, 2008

Sarah,
Welcome to the site. I was diagnosed at 21. When I was younger my parents were told I had asthma and cronic broncitis. Now we know better...

Anyway, CF is progressive. When I was diagnosed I was sick but the CF dr got me better; however it seems that everytime I get sick now, it takes a lot out of me. No matter what your allergist says you should go to a CF clinic and be followed by a CF dr. Even though you have mild symptoms, they could get worse down the road--there really isn't a way to predict. A CF dr will be able to help you stay as healthy as possible.

As for a website to visit; besides this one (which I reccomend highly) there is <a target=_blank class=ftalternatingbarlinklarge href="http://cff.org/">Cystic Fibrosis Foundation</a>

or

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nhlbi.nih.gov/health/dci/Diseases/cf/cf_what.html">What is CF (NIH)</a>

I too saw an allergist for a long time. About 8 years, he never had any answers. So I'm glad yours was on the ball!! Now you can get medical care so that you can stay as healthy as possible.

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

chrissyd · Jul 11, 2008

Sarah,
Welcome to the site. I was diagnosed at 21. When I was younger my parents were told I had asthma and cronic broncitis. Now we know better...

Anyway, CF is progressive. When I was diagnosed I was sick but the CF dr got me better; however it seems that everytime I get sick now, it takes a lot out of me. No matter what your allergist says you should go to a CF clinic and be followed by a CF dr. Even though you have mild symptoms, they could get worse down the road--there really isn't a way to predict. A CF dr will be able to help you stay as healthy as possible.

As for a website to visit; besides this one (which I reccomend highly) there is <a target=_blank class=ftalternatingbarlinklarge href="http://cff.org/">Cystic Fibrosis Foundation</a>

or

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nhlbi.nih.gov/health/dci/Diseases/cf/cf_what.html">What is CF (NIH)</a>

I too saw an allergist for a long time. About 8 years, he never had any answers. So I'm glad yours was on the ball!! Now you can get medical care so that you can stay as healthy as possible.

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

chrissyd · Jul 11, 2008

Sarah,
Welcome to the site. I was diagnosed at 21. When I was younger my parents were told I had asthma and cronic broncitis. Now we know better...

Anyway, CF is progressive. When I was diagnosed I was sick but the CF dr got me better; however it seems that everytime I get sick now, it takes a lot out of me. No matter what your allergist says you should go to a CF clinic and be followed by a CF dr. Even though you have mild symptoms, they could get worse down the road--there really isn't a way to predict. A CF dr will be able to help you stay as healthy as possible.

As for a website to visit; besides this one (which I reccomend highly) there is <a target=_blank class=ftalternatingbarlinklarge href="http://cff.org/">Cystic Fibrosis Foundation</a>

or

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nhlbi.nih.gov/health/dci/Diseases/cf/cf_what.html">What is CF (NIH)</a>

I too saw an allergist for a long time. About 8 years, he never had any answers. So I'm glad yours was on the ball!! Now you can get medical care so that you can stay as healthy as possible.

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

chrissyd · Jul 11, 2008

Sarah,
 Welcome to the site. I was diagnosed at 21. When I was younger my parents were told I had asthma and cronic broncitis. Now we know better...
 
 Anyway, CF is progressive. When I was diagnosed I was sick but the CF dr got me better; however it seems that everytime I get sick now, it takes a lot out of me. No matter what your allergist says you should go to a CF clinic and be followed by a CF dr. Even though you have mild symptoms, they could get worse down the road--there really isn't a way to predict. A CF dr will be able to help you stay as healthy as possible.
 
 As for a website to visit; besides this one (which I reccomend highly) there is <a target=_blank class=ftalternatingbarlinklarge href="http://cff.org/">Cystic Fibrosis Foundation</a>
 
 or
 
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.nhlbi.nih.gov/health/dci/Diseases/cf/cf_what.html">What is CF (NIH)</a>
 
 
 I too saw an allergist for a long time. About 8 years, he never had any answers. So I'm glad yours was on the ball!! Now you can get medical care so that you can stay as healthy as possible.
 
 
 <img src="i/expressions/rose.gif" border="0">

MargaritaChic · Jul 11, 2008

I agree with Chrissy... you should still consult with a CF clinic. They will be able to answer any questions you have.

Just out of curiosity...
Do you have any pancreatic, bowel issues, trouble gaining weight? Have you been tested to see if you are pacreatic sufficient? The CF Center may check that for you.

Also, did they tell you what mutations (genes) they found?

MargaritaChic · Jul 11, 2008

I agree with Chrissy... you should still consult with a CF clinic. They will be able to answer any questions you have.

Just out of curiosity...
Do you have any pancreatic, bowel issues, trouble gaining weight? Have you been tested to see if you are pacreatic sufficient? The CF Center may check that for you.

Also, did they tell you what mutations (genes) they found?

MargaritaChic · Jul 11, 2008

I agree with Chrissy... you should still consult with a CF clinic. They will be able to answer any questions you have.

Just out of curiosity...
Do you have any pancreatic, bowel issues, trouble gaining weight? Have you been tested to see if you are pacreatic sufficient? The CF Center may check that for you.

Also, did they tell you what mutations (genes) they found?

MargaritaChic · Jul 11, 2008

I agree with Chrissy... you should still consult with a CF clinic. They will be able to answer any questions you have.

Just out of curiosity...
Do you have any pancreatic, bowel issues, trouble gaining weight? Have you been tested to see if you are pacreatic sufficient? The CF Center may check that for you.

Also, did they tell you what mutations (genes) they found?

MargaritaChic · Jul 11, 2008

I agree with Chrissy... you should still consult with a CF clinic. They will be able to answer any questions you have.
 
 Just out of curiosity...
 Do you have any pancreatic, bowel issues, trouble gaining weight? Have you been tested to see if you are pacreatic sufficient? The CF Center may check that for you.
 
 Also, did they tell you what mutations (genes) they found?

CaliSally · Jul 11, 2008

Hi Sarah,
I'm sorry for what must be some shocking news. But we are here to help answer your questions and concerns.

I was diagnosed at birth, but I will throw some replies your way.

"Mild" or not, I WOULD go to a CF specialist as soon as possible. CF is progressive, and although you may be fairly healthy now, IF you don't seek help from the specialist, it could deteriate quickly.

The fact that your cough has gotten worse suggests you need to be on some regular CF maintenance (breathing treatments and percussion therapy), perhaps even some antibiotics. You want to keep your lungs as clear of mucus as you can, or they WILL get worse. This is why I suggest you DO go to a CF specialist.

I also thought I had "mild" CF and no one told me to take care of my lungs, so by not doing preventive maintenance, I now have permanent damage. My lung tests (breathing tests) put me in stage 3 of 3 in the damage category. Had I taken care of my lungs, I wouldn't be here.

One book that I've learned a lot from is:
"Cystic Fibrosis, A guide for patient and family" by David M. Orenstein. There may be others out there, I don't know.

Probably the most important thing you can do right now, is see a CF Specialist to learn how to start breathing treatments and percussion therapy.

Best wishes, and keep us posted.

P.S. At the top right of this page, there is "find a CF center near you" - go there to find an accredited center.

CaliSally · Jul 11, 2008

Hi Sarah,
I'm sorry for what must be some shocking news. But we are here to help answer your questions and concerns.

I was diagnosed at birth, but I will throw some replies your way.

"Mild" or not, I WOULD go to a CF specialist as soon as possible. CF is progressive, and although you may be fairly healthy now, IF you don't seek help from the specialist, it could deteriate quickly.

The fact that your cough has gotten worse suggests you need to be on some regular CF maintenance (breathing treatments and percussion therapy), perhaps even some antibiotics. You want to keep your lungs as clear of mucus as you can, or they WILL get worse. This is why I suggest you DO go to a CF specialist.

I also thought I had "mild" CF and no one told me to take care of my lungs, so by not doing preventive maintenance, I now have permanent damage. My lung tests (breathing tests) put me in stage 3 of 3 in the damage category. Had I taken care of my lungs, I wouldn't be here.

One book that I've learned a lot from is:
"Cystic Fibrosis, A guide for patient and family" by David M. Orenstein. There may be others out there, I don't know.

Probably the most important thing you can do right now, is see a CF Specialist to learn how to start breathing treatments and percussion therapy.

Best wishes, and keep us posted.

P.S. At the top right of this page, there is "find a CF center near you" - go there to find an accredited center.

CaliSally · Jul 11, 2008

Hi Sarah,
I'm sorry for what must be some shocking news. But we are here to help answer your questions and concerns.

I was diagnosed at birth, but I will throw some replies your way.

"Mild" or not, I WOULD go to a CF specialist as soon as possible. CF is progressive, and although you may be fairly healthy now, IF you don't seek help from the specialist, it could deteriate quickly.

The fact that your cough has gotten worse suggests you need to be on some regular CF maintenance (breathing treatments and percussion therapy), perhaps even some antibiotics. You want to keep your lungs as clear of mucus as you can, or they WILL get worse. This is why I suggest you DO go to a CF specialist.

I also thought I had "mild" CF and no one told me to take care of my lungs, so by not doing preventive maintenance, I now have permanent damage. My lung tests (breathing tests) put me in stage 3 of 3 in the damage category. Had I taken care of my lungs, I wouldn't be here.

One book that I've learned a lot from is:
"Cystic Fibrosis, A guide for patient and family" by David M. Orenstein. There may be others out there, I don't know.

Probably the most important thing you can do right now, is see a CF Specialist to learn how to start breathing treatments and percussion therapy.

Best wishes, and keep us posted.

P.S. At the top right of this page, there is "find a CF center near you" - go there to find an accredited center.

CaliSally · Jul 11, 2008

Hi Sarah,
I'm sorry for what must be some shocking news. But we are here to help answer your questions and concerns.

I was diagnosed at birth, but I will throw some replies your way.

"Mild" or not, I WOULD go to a CF specialist as soon as possible. CF is progressive, and although you may be fairly healthy now, IF you don't seek help from the specialist, it could deteriate quickly.

The fact that your cough has gotten worse suggests you need to be on some regular CF maintenance (breathing treatments and percussion therapy), perhaps even some antibiotics. You want to keep your lungs as clear of mucus as you can, or they WILL get worse. This is why I suggest you DO go to a CF specialist.

I also thought I had "mild" CF and no one told me to take care of my lungs, so by not doing preventive maintenance, I now have permanent damage. My lung tests (breathing tests) put me in stage 3 of 3 in the damage category. Had I taken care of my lungs, I wouldn't be here.

One book that I've learned a lot from is:
"Cystic Fibrosis, A guide for patient and family" by David M. Orenstein. There may be others out there, I don't know.

Probably the most important thing you can do right now, is see a CF Specialist to learn how to start breathing treatments and percussion therapy.

Best wishes, and keep us posted.

P.S. At the top right of this page, there is "find a CF center near you" - go there to find an accredited center.

CaliSally · Jul 11, 2008

Hi Sarah,
 I'm sorry for what must be some shocking news. But we are here to help answer your questions and concerns.
 
 I was diagnosed at birth, but I will throw some replies your way.
 
 "Mild" or not, I WOULD go to a CF specialist as soon as possible. CF is progressive, and although you may be fairly healthy now, IF you don't seek help from the specialist, it could deteriate quickly.
 
 The fact that your cough has gotten worse suggests you need to be on some regular CF maintenance (breathing treatments and percussion therapy), perhaps even some antibiotics. You want to keep your lungs as clear of mucus as you can, or they WILL get worse. This is why I suggest you DO go to a CF specialist.
 
 I also thought I had "mild" CF and no one told me to take care of my lungs, so by not doing preventive maintenance, I now have permanent damage. My lung tests (breathing tests) put me in stage 3 of 3 in the damage category. Had I taken care of my lungs, I wouldn't be here.
 
 One book that I've learned a lot from is:
 "Cystic Fibrosis, A guide for patient and family" by David M. Orenstein. There may be others out there, I don't know.
 
 Probably the most important thing you can do right now, is see a CF Specialist to learn how to start breathing treatments and percussion therapy.
 
 Best wishes, and keep us posted.
 
 P.S. At the top right of this page, there is "find a CF center near you" - go there to find an accredited center.

Questions about adult diagnosis

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