Newly diagnosed...for the 2nd time in 28yrs

rvm1212

New member
<div class="FTQUOTE"><begin quote>I think the worst part of it all is the not knowing what to expect</end quote></div>

Hi veneicia,

I´m sorry you have to deal with this. Here is an article about people diagnosed as adults, that I found helpfull when my boyfriend was diagnosed last year at age 35.
<a target=_blank class=ftalternatingbarlinklarge href="http://ajrccm.atsjournals.org/cgi/content/full/171/6/621
">http://ajrccm.atsjournals.org/...ontent/full/171/6/621
</a>

rvm. boyfriend diagnosed at age 35. Fev 94%. No pseudomona
 

rvm1212

New member
<div class="FTQUOTE"><begin quote>I think the worst part of it all is the not knowing what to expect</end quote></div>

Hi veneicia,

I´m sorry you have to deal with this. Here is an article about people diagnosed as adults, that I found helpfull when my boyfriend was diagnosed last year at age 35.
<a target=_blank class=ftalternatingbarlinklarge href="http://ajrccm.atsjournals.org/cgi/content/full/171/6/621
">http://ajrccm.atsjournals.org/...ontent/full/171/6/621
</a>

rvm. boyfriend diagnosed at age 35. Fev 94%. No pseudomona
 

rvm1212

New member
<div class="FTQUOTE"><begin quote>I think the worst part of it all is the not knowing what to expect</end quote></div>

Hi veneicia,

I´m sorry you have to deal with this. Here is an article about people diagnosed as adults, that I found helpfull when my boyfriend was diagnosed last year at age 35.
<a target=_blank class=ftalternatingbarlinklarge href="http://ajrccm.atsjournals.org/cgi/content/full/171/6/621
">http://ajrccm.atsjournals.org/...ontent/full/171/6/621
</a>

rvm. boyfriend diagnosed at age 35. Fev 94%. No pseudomona
 

rvm1212

New member
<div class="FTQUOTE"><begin quote>I think the worst part of it all is the not knowing what to expect</end quote>

Hi veneicia,

I´m sorry you have to deal with this. Here is an article about people diagnosed as adults, that I found helpfull when my boyfriend was diagnosed last year at age 35.
<a target=_blank class=ftalternatingbarlinklarge href="http://ajrccm.atsjournals.org/cgi/content/full/171/6/621
">http://ajrccm.atsjournals.org/...ontent/full/171/6/621
</a>

rvm. boyfriend diagnosed at age 35. Fev 94%. No pseudomona
 

rvm1212

New member
<div class="FTQUOTE"><begin quote>I think the worst part of it all is the not knowing what to expect</end quote>

Hi veneicia,

I´m sorry you have to deal with this. Here is an article about people diagnosed as adults, that I found helpfull when my boyfriend was diagnosed last year at age 35.
<a target=_blank class=ftalternatingbarlinklarge href="http://ajrccm.atsjournals.org/cgi/content/full/171/6/621
">http://ajrccm.atsjournals.org/...ontent/full/171/6/621
</a>

rvm. boyfriend diagnosed at age 35. Fev 94%. No pseudomona
 

Veneicia

New member
RMV1212~
Thank you so much for sharing that article! I glanced at it a little- but didn't have much time- so I will go over in depth this evening. How is your boyfriend doing healthwise with this?
 

Veneicia

New member
RMV1212~
Thank you so much for sharing that article! I glanced at it a little- but didn't have much time- so I will go over in depth this evening. How is your boyfriend doing healthwise with this?
 

Veneicia

New member
RMV1212~
Thank you so much for sharing that article! I glanced at it a little- but didn't have much time- so I will go over in depth this evening. How is your boyfriend doing healthwise with this?
 

Veneicia

New member
RMV1212~
Thank you so much for sharing that article! I glanced at it a little- but didn't have much time- so I will go over in depth this evening. How is your boyfriend doing healthwise with this?
 

Veneicia

New member
RMV1212~
Thank you so much for sharing that article! I glanced at it a little- but didn't have much time- so I will go over in depth this evening. How is your boyfriend doing healthwise with this?
 

Veneicia

New member
To All_
Just out of curiosity, can I ask what your or your family members chloride score is/was? Obviously I know everyone is different, but I guess I'm looking to compare to someone.

I hope you all have a wonderful weekend (or what's left of it)

Veneicia
 

Veneicia

New member
To All_
Just out of curiosity, can I ask what your or your family members chloride score is/was? Obviously I know everyone is different, but I guess I'm looking to compare to someone.

I hope you all have a wonderful weekend (or what's left of it)

Veneicia
 

Veneicia

New member
To All_
Just out of curiosity, can I ask what your or your family members chloride score is/was? Obviously I know everyone is different, but I guess I'm looking to compare to someone.

I hope you all have a wonderful weekend (or what's left of it)

Veneicia
 

Veneicia

New member
To All_
Just out of curiosity, can I ask what your or your family members chloride score is/was? Obviously I know everyone is different, but I guess I'm looking to compare to someone.

I hope you all have a wonderful weekend (or what's left of it)

Veneicia
 

Veneicia

New member
To All_
Just out of curiosity, can I ask what your or your family members chloride score is/was? Obviously I know everyone is different, but I guess I'm looking to compare to someone.

I hope you all have a wonderful weekend (or what's left of it)

Veneicia
 

Alyssa

New member
Veneicia,

Don't get too wrapped up in the age thing -- some times little kids die, some people with CF are in their 60's and 70's and still leading productive lives. You just never know what will happen. Google the name Hal Soloff, you'll get a couple different stories about his life (written at different times) but he has just turned either 75 or 76 years old I can't remember for sure. He hangs out on the cystic-L.com list. In fact we did a roll call of "oldies" on that list a month or so ago -- there were a lot of people who responded who are between the ages of 40-76.

People's sweat test numbers will not tell you much - all that means is the higher the number the less function the sweat chloride channel has - it doesn't have a direct correlation to the progress of the disease. It does however have a direct correlation to how easily a person will become dehydrated on a hot day or during activity/exercise so extra salt, water and electrolyte intake is always a good idea.

Genes are also something to be used as a guideline but they are not always a crystal ball. There is some info to be gleaned from them by category or class (I think there are 5 classes of genes -- I II and III are considered the more severe and IV and V are the more mild variant. If a person has one of a class IV or V with a T7 or T9 they do have a better probability of less severe symptoms and slower progression. But there are so many other factors such as epi-genome info, other gene combination, the environment, compliance to meds, and just plain luck. There is that one gene therapy medication coming down the pipeline that will work to cure those with the X type gene because it can actually bypass the dysfunction and make the chloride channel function normally, so it is good to know what your genes are, it can give you some insight but don't count on it giving you all the answers you want to know in black in white. For most of us it's a "do the best you can" game - enjoy the good times, and hope for the best during the not so good times. Do your best with exercise and preventative meds and do your treatments and antibiotics when you are sick. Some people can bounce back after an infection and see no permanent damage - others it's a game of two steps back and one forward.... again you just don't know. Obviously you have done pretty well up to this point without the benefit of knowing and treating the CF correctly - so I'd have to say you've got that going for you already.

Did you say if you got the genetic testing done yet? Have they told you if they will be testing for all the CF genes? Also do you know yet if you still have the psuedomonas bacteria in your sinuses or not? Do you cough up any mucus that they can test for psuedomonas? Have you have a throat culture done?

Best wishes - please keep us posted.
 

Alyssa

New member
Veneicia,

Don't get too wrapped up in the age thing -- some times little kids die, some people with CF are in their 60's and 70's and still leading productive lives. You just never know what will happen. Google the name Hal Soloff, you'll get a couple different stories about his life (written at different times) but he has just turned either 75 or 76 years old I can't remember for sure. He hangs out on the cystic-L.com list. In fact we did a roll call of "oldies" on that list a month or so ago -- there were a lot of people who responded who are between the ages of 40-76.

People's sweat test numbers will not tell you much - all that means is the higher the number the less function the sweat chloride channel has - it doesn't have a direct correlation to the progress of the disease. It does however have a direct correlation to how easily a person will become dehydrated on a hot day or during activity/exercise so extra salt, water and electrolyte intake is always a good idea.

Genes are also something to be used as a guideline but they are not always a crystal ball. There is some info to be gleaned from them by category or class (I think there are 5 classes of genes -- I II and III are considered the more severe and IV and V are the more mild variant. If a person has one of a class IV or V with a T7 or T9 they do have a better probability of less severe symptoms and slower progression. But there are so many other factors such as epi-genome info, other gene combination, the environment, compliance to meds, and just plain luck. There is that one gene therapy medication coming down the pipeline that will work to cure those with the X type gene because it can actually bypass the dysfunction and make the chloride channel function normally, so it is good to know what your genes are, it can give you some insight but don't count on it giving you all the answers you want to know in black in white. For most of us it's a "do the best you can" game - enjoy the good times, and hope for the best during the not so good times. Do your best with exercise and preventative meds and do your treatments and antibiotics when you are sick. Some people can bounce back after an infection and see no permanent damage - others it's a game of two steps back and one forward.... again you just don't know. Obviously you have done pretty well up to this point without the benefit of knowing and treating the CF correctly - so I'd have to say you've got that going for you already.

Did you say if you got the genetic testing done yet? Have they told you if they will be testing for all the CF genes? Also do you know yet if you still have the psuedomonas bacteria in your sinuses or not? Do you cough up any mucus that they can test for psuedomonas? Have you have a throat culture done?

Best wishes - please keep us posted.
 

Alyssa

New member
Veneicia,

Don't get too wrapped up in the age thing -- some times little kids die, some people with CF are in their 60's and 70's and still leading productive lives. You just never know what will happen. Google the name Hal Soloff, you'll get a couple different stories about his life (written at different times) but he has just turned either 75 or 76 years old I can't remember for sure. He hangs out on the cystic-L.com list. In fact we did a roll call of "oldies" on that list a month or so ago -- there were a lot of people who responded who are between the ages of 40-76.

People's sweat test numbers will not tell you much - all that means is the higher the number the less function the sweat chloride channel has - it doesn't have a direct correlation to the progress of the disease. It does however have a direct correlation to how easily a person will become dehydrated on a hot day or during activity/exercise so extra salt, water and electrolyte intake is always a good idea.

Genes are also something to be used as a guideline but they are not always a crystal ball. There is some info to be gleaned from them by category or class (I think there are 5 classes of genes -- I II and III are considered the more severe and IV and V are the more mild variant. If a person has one of a class IV or V with a T7 or T9 they do have a better probability of less severe symptoms and slower progression. But there are so many other factors such as epi-genome info, other gene combination, the environment, compliance to meds, and just plain luck. There is that one gene therapy medication coming down the pipeline that will work to cure those with the X type gene because it can actually bypass the dysfunction and make the chloride channel function normally, so it is good to know what your genes are, it can give you some insight but don't count on it giving you all the answers you want to know in black in white. For most of us it's a "do the best you can" game - enjoy the good times, and hope for the best during the not so good times. Do your best with exercise and preventative meds and do your treatments and antibiotics when you are sick. Some people can bounce back after an infection and see no permanent damage - others it's a game of two steps back and one forward.... again you just don't know. Obviously you have done pretty well up to this point without the benefit of knowing and treating the CF correctly - so I'd have to say you've got that going for you already.

Did you say if you got the genetic testing done yet? Have they told you if they will be testing for all the CF genes? Also do you know yet if you still have the psuedomonas bacteria in your sinuses or not? Do you cough up any mucus that they can test for psuedomonas? Have you have a throat culture done?

Best wishes - please keep us posted.
 

Alyssa

New member
Veneicia,

Don't get too wrapped up in the age thing -- some times little kids die, some people with CF are in their 60's and 70's and still leading productive lives. You just never know what will happen. Google the name Hal Soloff, you'll get a couple different stories about his life (written at different times) but he has just turned either 75 or 76 years old I can't remember for sure. He hangs out on the cystic-L.com list. In fact we did a roll call of "oldies" on that list a month or so ago -- there were a lot of people who responded who are between the ages of 40-76.

People's sweat test numbers will not tell you much - all that means is the higher the number the less function the sweat chloride channel has - it doesn't have a direct correlation to the progress of the disease. It does however have a direct correlation to how easily a person will become dehydrated on a hot day or during activity/exercise so extra salt, water and electrolyte intake is always a good idea.

Genes are also something to be used as a guideline but they are not always a crystal ball. There is some info to be gleaned from them by category or class (I think there are 5 classes of genes -- I II and III are considered the more severe and IV and V are the more mild variant. If a person has one of a class IV or V with a T7 or T9 they do have a better probability of less severe symptoms and slower progression. But there are so many other factors such as epi-genome info, other gene combination, the environment, compliance to meds, and just plain luck. There is that one gene therapy medication coming down the pipeline that will work to cure those with the X type gene because it can actually bypass the dysfunction and make the chloride channel function normally, so it is good to know what your genes are, it can give you some insight but don't count on it giving you all the answers you want to know in black in white. For most of us it's a "do the best you can" game - enjoy the good times, and hope for the best during the not so good times. Do your best with exercise and preventative meds and do your treatments and antibiotics when you are sick. Some people can bounce back after an infection and see no permanent damage - others it's a game of two steps back and one forward.... again you just don't know. Obviously you have done pretty well up to this point without the benefit of knowing and treating the CF correctly - so I'd have to say you've got that going for you already.

Did you say if you got the genetic testing done yet? Have they told you if they will be testing for all the CF genes? Also do you know yet if you still have the psuedomonas bacteria in your sinuses or not? Do you cough up any mucus that they can test for psuedomonas? Have you have a throat culture done?

Best wishes - please keep us posted.
 

Alyssa

New member
Veneicia,

Don't get too wrapped up in the age thing -- some times little kids die, some people with CF are in their 60's and 70's and still leading productive lives. You just never know what will happen. Google the name Hal Soloff, you'll get a couple different stories about his life (written at different times) but he has just turned either 75 or 76 years old I can't remember for sure. He hangs out on the cystic-L.com list. In fact we did a roll call of "oldies" on that list a month or so ago -- there were a lot of people who responded who are between the ages of 40-76.

People's sweat test numbers will not tell you much - all that means is the higher the number the less function the sweat chloride channel has - it doesn't have a direct correlation to the progress of the disease. It does however have a direct correlation to how easily a person will become dehydrated on a hot day or during activity/exercise so extra salt, water and electrolyte intake is always a good idea.

Genes are also something to be used as a guideline but they are not always a crystal ball. There is some info to be gleaned from them by category or class (I think there are 5 classes of genes -- I II and III are considered the more severe and IV and V are the more mild variant. If a person has one of a class IV or V with a T7 or T9 they do have a better probability of less severe symptoms and slower progression. But there are so many other factors such as epi-genome info, other gene combination, the environment, compliance to meds, and just plain luck. There is that one gene therapy medication coming down the pipeline that will work to cure those with the X type gene because it can actually bypass the dysfunction and make the chloride channel function normally, so it is good to know what your genes are, it can give you some insight but don't count on it giving you all the answers you want to know in black in white. For most of us it's a "do the best you can" game - enjoy the good times, and hope for the best during the not so good times. Do your best with exercise and preventative meds and do your treatments and antibiotics when you are sick. Some people can bounce back after an infection and see no permanent damage - others it's a game of two steps back and one forward.... again you just don't know. Obviously you have done pretty well up to this point without the benefit of knowing and treating the CF correctly - so I'd have to say you've got that going for you already.

Did you say if you got the genetic testing done yet? Have they told you if they will be testing for all the CF genes? Also do you know yet if you still have the psuedomonas bacteria in your sinuses or not? Do you cough up any mucus that they can test for psuedomonas? Have you have a throat culture done?

Best wishes - please keep us posted.
 
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