TX AS IF...

[valigirl21]

I would like to thank every1 who responded to this post. I find it difficult sometimes to deal with the waiting. For those of you who were wondering my son's sweat chloride is 44,42, and 43, in order of testing. No known genetic mutations. FTT, pancreatic insufficient, respiratory issues. Has cultured staph pneumonae and MRSA.

As a post-script, my son's treatment is almost identical to most Cfers, minus the vest b/c our insurance won't pay for it w/o dx. Thank you again to all who posted.

 

[valigirl21]

I would like to thank every1 who responded to this post. I find it difficult sometimes to deal with the waiting. For those of you who were wondering my son's sweat chloride is 44,42, and 43, in order of testing. No known genetic mutations. FTT, pancreatic insufficient, respiratory issues. Has cultured staph pneumonae and MRSA.

As a post-script, my son's treatment is almost identical to most Cfers, minus the vest b/c our insurance won't pay for it w/o dx. Thank you again to all who posted.

 

[valigirl21]

I would like to thank every1 who responded to this post. I find it difficult sometimes to deal with the waiting. For those of you who were wondering my son's sweat chloride is 44,42, and 43, in order of testing. No known genetic mutations. FTT, pancreatic insufficient, respiratory issues. Has cultured staph pneumonae and MRSA.

As a post-script, my son's treatment is almost identical to most Cfers, minus the vest b/c our insurance won't pay for it w/o dx. Thank you again to all who posted.

 

[valigirl21]

I would like to thank every1 who responded to this post. I find it difficult sometimes to deal with the waiting. For those of you who were wondering my son's sweat chloride is 44,42, and 43, in order of testing. No known genetic mutations. FTT, pancreatic insufficient, respiratory issues. Has cultured staph pneumonae and MRSA.

As a post-script, my son's treatment is almost identical to most Cfers, minus the vest b/c our insurance won't pay for it w/o dx. Thank you again to all who posted.

 

[valigirl21]

I would like to thank every1 who responded to this post. I find it difficult sometimes to deal with the waiting. For those of you who were wondering my son's sweat chloride is 44,42, and 43, in order of testing. No known genetic mutations. FTT, pancreatic insufficient, respiratory issues. Has cultured staph pneumonae and MRSA.
<br />
<br />As a post-script, my son's treatment is almost identical to most Cfers, minus the vest b/c our insurance won't pay for it w/o dx. Thank you again to all who posted.

 

[Nightwriter]

Valerie,

I also think symptoms are more important that genetic diagnosis. Mostly because until CF was finally confirmed last year, that was my story. I was "normal" until I was 21. So in other words, had I been been born in a time when there were genetic tests, I would have had the mildest case ever until I was 21 when all hell broke loose. My doctor said he strongly suspected a mutation of CF, which I promptly denied. I was 21 and I didn't "like" that diagnosis. LOL.

I has all the lung manifestations that are usually associated with CF: Pseudomonas, staph, MAC, hemoptysis, drug resistance, bronchiectasis, constant infections, chronic cough.. the works. High normal sweat test (I don't know how high). I had the genetic test when it first came out and they identified 1 gene (only about 80 had been discovered.) I still didn't think I had CF, although I kinda DID at the same time. I had a different doctor at this time who said probably CF and his partner ran an adult CF group through a major medical center and was annoyed at me when I said that I didn't want to join.

When the full panel test came out, I still didn't want to know. My insurance was willing to pay for anything the doctor ordered. Nothing would have changed in my treatment, so I liked deluding myself.

Lat year, when I signed up for a special insurance program in CA, to give myself peace of mind (since my insurance premiums had tripled in one year), they made me get the test. And now I wanted it to be positive very badly. I finally realized no matter what you call it, I had the same symptoms. I was thrilled when the results were positive, which I know sounds bizarre -- because I couldn't sleep any more worrying about my insurance.

So after a lifetime of being sick, I now understood what was wrong with me. And the other good thing about knowing is that it may be helpful to know for future treatments which require known genetic mutations.

In my book, this is not a contest. Whether someone is mild or severe, it's still a big ol' pain. It's not being fun being sick, it's time consuming, and affects every one you know in some capacity.

So I guess there are different routes for getting into the club, but in the end we're still all members.

One more thing, I noticed that your insurance won't buy you a vest. The last time I was sick, and had bleeding, I couldn't use my "Flutter" which is a mucus clearing device (in case you didn't know) my doctor suggesting trying one of those giant massagers or a kind of a massaging jacket that you wrap around yourself. I have used both.

I really like a giant massager that I bought at Brookstone. It has different speeds and if it is too much, you can use it over a towel -- if your doctor thinks it's right for your son. I used postural drainage with the massager. After the bleeding stopped, I added a .09% saline and then worked my way back up to a 7% H.S. and it all worked very well for me.

These days, I use H.S. and the Flutter.

 

[Nightwriter]

Valerie,

I also think symptoms are more important that genetic diagnosis. Mostly because until CF was finally confirmed last year, that was my story. I was "normal" until I was 21. So in other words, had I been been born in a time when there were genetic tests, I would have had the mildest case ever until I was 21 when all hell broke loose. My doctor said he strongly suspected a mutation of CF, which I promptly denied. I was 21 and I didn't "like" that diagnosis. LOL.

I has all the lung manifestations that are usually associated with CF: Pseudomonas, staph, MAC, hemoptysis, drug resistance, bronchiectasis, constant infections, chronic cough.. the works. High normal sweat test (I don't know how high). I had the genetic test when it first came out and they identified 1 gene (only about 80 had been discovered.) I still didn't think I had CF, although I kinda DID at the same time. I had a different doctor at this time who said probably CF and his partner ran an adult CF group through a major medical center and was annoyed at me when I said that I didn't want to join.

When the full panel test came out, I still didn't want to know. My insurance was willing to pay for anything the doctor ordered. Nothing would have changed in my treatment, so I liked deluding myself.

Lat year, when I signed up for a special insurance program in CA, to give myself peace of mind (since my insurance premiums had tripled in one year), they made me get the test. And now I wanted it to be positive very badly. I finally realized no matter what you call it, I had the same symptoms. I was thrilled when the results were positive, which I know sounds bizarre -- because I couldn't sleep any more worrying about my insurance.

So after a lifetime of being sick, I now understood what was wrong with me. And the other good thing about knowing is that it may be helpful to know for future treatments which require known genetic mutations.

In my book, this is not a contest. Whether someone is mild or severe, it's still a big ol' pain. It's not being fun being sick, it's time consuming, and affects every one you know in some capacity.

So I guess there are different routes for getting into the club, but in the end we're still all members.

One more thing, I noticed that your insurance won't buy you a vest. The last time I was sick, and had bleeding, I couldn't use my "Flutter" which is a mucus clearing device (in case you didn't know) my doctor suggesting trying one of those giant massagers or a kind of a massaging jacket that you wrap around yourself. I have used both.

I really like a giant massager that I bought at Brookstone. It has different speeds and if it is too much, you can use it over a towel -- if your doctor thinks it's right for your son. I used postural drainage with the massager. After the bleeding stopped, I added a .09% saline and then worked my way back up to a 7% H.S. and it all worked very well for me.

These days, I use H.S. and the Flutter.

 

[Nightwriter]

Valerie,

I also think symptoms are more important that genetic diagnosis. Mostly because until CF was finally confirmed last year, that was my story. I was "normal" until I was 21. So in other words, had I been been born in a time when there were genetic tests, I would have had the mildest case ever until I was 21 when all hell broke loose. My doctor said he strongly suspected a mutation of CF, which I promptly denied. I was 21 and I didn't "like" that diagnosis. LOL.

I has all the lung manifestations that are usually associated with CF: Pseudomonas, staph, MAC, hemoptysis, drug resistance, bronchiectasis, constant infections, chronic cough.. the works. High normal sweat test (I don't know how high). I had the genetic test when it first came out and they identified 1 gene (only about 80 had been discovered.) I still didn't think I had CF, although I kinda DID at the same time. I had a different doctor at this time who said probably CF and his partner ran an adult CF group through a major medical center and was annoyed at me when I said that I didn't want to join.

When the full panel test came out, I still didn't want to know. My insurance was willing to pay for anything the doctor ordered. Nothing would have changed in my treatment, so I liked deluding myself.

Lat year, when I signed up for a special insurance program in CA, to give myself peace of mind (since my insurance premiums had tripled in one year), they made me get the test. And now I wanted it to be positive very badly. I finally realized no matter what you call it, I had the same symptoms. I was thrilled when the results were positive, which I know sounds bizarre -- because I couldn't sleep any more worrying about my insurance.

So after a lifetime of being sick, I now understood what was wrong with me. And the other good thing about knowing is that it may be helpful to know for future treatments which require known genetic mutations.

In my book, this is not a contest. Whether someone is mild or severe, it's still a big ol' pain. It's not being fun being sick, it's time consuming, and affects every one you know in some capacity.

So I guess there are different routes for getting into the club, but in the end we're still all members.

One more thing, I noticed that your insurance won't buy you a vest. The last time I was sick, and had bleeding, I couldn't use my "Flutter" which is a mucus clearing device (in case you didn't know) my doctor suggesting trying one of those giant massagers or a kind of a massaging jacket that you wrap around yourself. I have used both.

I really like a giant massager that I bought at Brookstone. It has different speeds and if it is too much, you can use it over a towel -- if your doctor thinks it's right for your son. I used postural drainage with the massager. After the bleeding stopped, I added a .09% saline and then worked my way back up to a 7% H.S. and it all worked very well for me.

These days, I use H.S. and the Flutter.

 

[Nightwriter]

Valerie,

I also think symptoms are more important that genetic diagnosis. Mostly because until CF was finally confirmed last year, that was my story. I was "normal" until I was 21. So in other words, had I been been born in a time when there were genetic tests, I would have had the mildest case ever until I was 21 when all hell broke loose. My doctor said he strongly suspected a mutation of CF, which I promptly denied. I was 21 and I didn't "like" that diagnosis. LOL.

I has all the lung manifestations that are usually associated with CF: Pseudomonas, staph, MAC, hemoptysis, drug resistance, bronchiectasis, constant infections, chronic cough.. the works. High normal sweat test (I don't know how high). I had the genetic test when it first came out and they identified 1 gene (only about 80 had been discovered.) I still didn't think I had CF, although I kinda DID at the same time. I had a different doctor at this time who said probably CF and his partner ran an adult CF group through a major medical center and was annoyed at me when I said that I didn't want to join.

When the full panel test came out, I still didn't want to know. My insurance was willing to pay for anything the doctor ordered. Nothing would have changed in my treatment, so I liked deluding myself.

Lat year, when I signed up for a special insurance program in CA, to give myself peace of mind (since my insurance premiums had tripled in one year), they made me get the test. And now I wanted it to be positive very badly. I finally realized no matter what you call it, I had the same symptoms. I was thrilled when the results were positive, which I know sounds bizarre -- because I couldn't sleep any more worrying about my insurance.

So after a lifetime of being sick, I now understood what was wrong with me. And the other good thing about knowing is that it may be helpful to know for future treatments which require known genetic mutations.

In my book, this is not a contest. Whether someone is mild or severe, it's still a big ol' pain. It's not being fun being sick, it's time consuming, and affects every one you know in some capacity.

So I guess there are different routes for getting into the club, but in the end we're still all members.

One more thing, I noticed that your insurance won't buy you a vest. The last time I was sick, and had bleeding, I couldn't use my "Flutter" which is a mucus clearing device (in case you didn't know) my doctor suggesting trying one of those giant massagers or a kind of a massaging jacket that you wrap around yourself. I have used both.

I really like a giant massager that I bought at Brookstone. It has different speeds and if it is too much, you can use it over a towel -- if your doctor thinks it's right for your son. I used postural drainage with the massager. After the bleeding stopped, I added a .09% saline and then worked my way back up to a 7% H.S. and it all worked very well for me.

These days, I use H.S. and the Flutter.

 

[Nightwriter]

Valerie,
<br />
<br />I also think symptoms are more important that genetic diagnosis. Mostly because until CF was finally confirmed last year, that was my story. I was "normal" until I was 21. So in other words, had I been been born in a time when there were genetic tests, I would have had the mildest case ever until I was 21 when all hell broke loose. My doctor said he strongly suspected a mutation of CF, which I promptly denied. I was 21 and I didn't "like" that diagnosis. LOL.
<br />
<br />I has all the lung manifestations that are usually associated with CF: Pseudomonas, staph, MAC, hemoptysis, drug resistance, bronchiectasis, constant infections, chronic cough.. the works. High normal sweat test (I don't know how high). I had the genetic test when it first came out and they identified 1 gene (only about 80 had been discovered.) I still didn't think I had CF, although I kinda DID at the same time. I had a different doctor at this time who said probably CF and his partner ran an adult CF group through a major medical center and was annoyed at me when I said that I didn't want to join.
<br />
<br />When the full panel test came out, I still didn't want to know. My insurance was willing to pay for anything the doctor ordered. Nothing would have changed in my treatment, so I liked deluding myself.
<br />
<br />Lat year, when I signed up for a special insurance program in CA, to give myself peace of mind (since my insurance premiums had tripled in one year), they made me get the test. And now I wanted it to be positive very badly. I finally realized no matter what you call it, I had the same symptoms. I was thrilled when the results were positive, which I know sounds bizarre -- because I couldn't sleep any more worrying about my insurance.
<br />
<br />So after a lifetime of being sick, I now understood what was wrong with me. And the other good thing about knowing is that it may be helpful to know for future treatments which require known genetic mutations.
<br />
<br />In my book, this is not a contest. Whether someone is mild or severe, it's still a big ol' pain. It's not being fun being sick, it's time consuming, and affects every one you know in some capacity.
<br />
<br />So I guess there are different routes for getting into the club, but in the end we're still all members.
<br />
<br />One more thing, I noticed that your insurance won't buy you a vest. The last time I was sick, and had bleeding, I couldn't use my "Flutter" which is a mucus clearing device (in case you didn't know) my doctor suggesting trying one of those giant massagers or a kind of a massaging jacket that you wrap around yourself. I have used both.
<br />
<br />I really like a giant massager that I bought at Brookstone. It has different speeds and if it is too much, you can use it over a towel -- if your doctor thinks it's right for your son. I used postural drainage with the massager. After the bleeding stopped, I added a .09% saline and then worked my way back up to a 7% H.S. and it all worked very well for me.
<br />
<br />These days, I use H.S. and the Flutter.

 

[amyr]

I am so glad to see this thread. My kids were dx with atypical CF, borderline sweats two copies of M470V which is listed as a CF mutation however is considered "non disease causing". We are in the hospital right now with my daughter who has bronchiectasis/pneumonia & digestive issues. Her chest xray and CT scan showed "classic CF lungs" per the Pulmonologist. We are doing deletion testing today. Their Dr. just presented on them at thier hospital about this atypical presentation of the disease.(Inconclusive tests yet classic symptoms/issues).

This has been my life for 11 years wih my kids and I like one of the other posters had a sister who passed away in 95 at age 29. They dx her with Environmental Illness. She had Lung disease, sinus disease and unexplained digestive issues. I think there is a huge group of people out there who fall into this "grey area". I have started a company and my "Mission" is to raise awarness of CF and all of the possible "Varients" of this disease. I will be donating a portion of the proceeds to CF research. This disease or variant of the disease or whatever you want to call it has consumed my life and the life of my kids and I am determined to fight back for thier sake and the sake of so many other people out there who lead a similar life to ours. With awarness comes money and with money comes research. A lot of times I will tell people my children have CF and they have no clue what Cystic Fibrosis is. I have big dreams to change that..

 

[amyr]

I am so glad to see this thread. My kids were dx with atypical CF, borderline sweats two copies of M470V which is listed as a CF mutation however is considered "non disease causing". We are in the hospital right now with my daughter who has bronchiectasis/pneumonia & digestive issues. Her chest xray and CT scan showed "classic CF lungs" per the Pulmonologist. We are doing deletion testing today. Their Dr. just presented on them at thier hospital about this atypical presentation of the disease.(Inconclusive tests yet classic symptoms/issues).

This has been my life for 11 years wih my kids and I like one of the other posters had a sister who passed away in 95 at age 29. They dx her with Environmental Illness. She had Lung disease, sinus disease and unexplained digestive issues. I think there is a huge group of people out there who fall into this "grey area". I have started a company and my "Mission" is to raise awarness of CF and all of the possible "Varients" of this disease. I will be donating a portion of the proceeds to CF research. This disease or variant of the disease or whatever you want to call it has consumed my life and the life of my kids and I am determined to fight back for thier sake and the sake of so many other people out there who lead a similar life to ours. With awarness comes money and with money comes research. A lot of times I will tell people my children have CF and they have no clue what Cystic Fibrosis is. I have big dreams to change that..

 

[amyr]

I am so glad to see this thread. My kids were dx with atypical CF, borderline sweats two copies of M470V which is listed as a CF mutation however is considered "non disease causing". We are in the hospital right now with my daughter who has bronchiectasis/pneumonia & digestive issues. Her chest xray and CT scan showed "classic CF lungs" per the Pulmonologist. We are doing deletion testing today. Their Dr. just presented on them at thier hospital about this atypical presentation of the disease.(Inconclusive tests yet classic symptoms/issues).

This has been my life for 11 years wih my kids and I like one of the other posters had a sister who passed away in 95 at age 29. They dx her with Environmental Illness. She had Lung disease, sinus disease and unexplained digestive issues. I think there is a huge group of people out there who fall into this "grey area". I have started a company and my "Mission" is to raise awarness of CF and all of the possible "Varients" of this disease. I will be donating a portion of the proceeds to CF research. This disease or variant of the disease or whatever you want to call it has consumed my life and the life of my kids and I am determined to fight back for thier sake and the sake of so many other people out there who lead a similar life to ours. With awarness comes money and with money comes research. A lot of times I will tell people my children have CF and they have no clue what Cystic Fibrosis is. I have big dreams to change that..

 

[amyr]

I am so glad to see this thread. My kids were dx with atypical CF, borderline sweats two copies of M470V which is listed as a CF mutation however is considered "non disease causing". We are in the hospital right now with my daughter who has bronchiectasis/pneumonia & digestive issues. Her chest xray and CT scan showed "classic CF lungs" per the Pulmonologist. We are doing deletion testing today. Their Dr. just presented on them at thier hospital about this atypical presentation of the disease.(Inconclusive tests yet classic symptoms/issues).

This has been my life for 11 years wih my kids and I like one of the other posters had a sister who passed away in 95 at age 29. They dx her with Environmental Illness. She had Lung disease, sinus disease and unexplained digestive issues. I think there is a huge group of people out there who fall into this "grey area". I have started a company and my "Mission" is to raise awarness of CF and all of the possible "Varients" of this disease. I will be donating a portion of the proceeds to CF research. This disease or variant of the disease or whatever you want to call it has consumed my life and the life of my kids and I am determined to fight back for thier sake and the sake of so many other people out there who lead a similar life to ours. With awarness comes money and with money comes research. A lot of times I will tell people my children have CF and they have no clue what Cystic Fibrosis is. I have big dreams to change that..

 

[amyr]

I am so glad to see this thread. My kids were dx with atypical CF, borderline sweats two copies of M470V which is listed as a CF mutation however is considered "non disease causing". We are in the hospital right now with my daughter who has bronchiectasis/pneumonia & digestive issues. Her chest xray and CT scan showed "classic CF lungs" per the Pulmonologist. We are doing deletion testing today. Their Dr. just presented on them at thier hospital about this atypical presentation of the disease.(Inconclusive tests yet classic symptoms/issues).
<br />
<br /> This has been my life for 11 years wih my kids and I like one of the other posters had a sister who passed away in 95 at age 29. They dx her with Environmental Illness. She had Lung disease, sinus disease and unexplained digestive issues. I think there is a huge group of people out there who fall into this "grey area". I have started a company and my "Mission" is to raise awarness of CF and all of the possible "Varients" of this disease. I will be donating a portion of the proceeds to CF research. This disease or variant of the disease or whatever you want to call it has consumed my life and the life of my kids and I am determined to fight back for thier sake and the sake of so many other people out there who lead a similar life to ours. With awarness comes money and with money comes research. A lot of times I will tell people my children have CF and they have no clue what Cystic Fibrosis is. I have big dreams to change that..