Diagnosis in progress

[Apex692]

I am new to the forum and this is my first post, so hello to all. I am currently in the diagnosis process, though some have said the diagnosis is complete. I grew up with cronic sinus infections (5 or more per year) and had sinus surgery at 19. Several weeks of antibiotics tend to help. Due to fertility issues (CBAVD) my wife and I went to a specialist and had some genetic testing where the following mutations were found - D508F and R117H. My sweat test results were borderline. I did not ask what the actual number was, and will at my next appt. I still need to have a head and chest CT and then the doctor told me he would give me a full review of my status. I am currently 40 and trying to work through all of the crazy thoughts and feelings with this. If anyone has experience with these mutations or adult diagnosis I would apprecieate feedback.

Thanks!

 

[Apex692]

I am new to the forum and this is my first post, so hello to all. I am currently in the diagnosis process, though some have said the diagnosis is complete. I grew up with cronic sinus infections (5 or more per year) and had sinus surgery at 19. Several weeks of antibiotics tend to help. Due to fertility issues (CBAVD) my wife and I went to a specialist and had some genetic testing where the following mutations were found - D508F and R117H. My sweat test results were borderline. I did not ask what the actual number was, and will at my next appt. I still need to have a head and chest CT and then the doctor told me he would give me a full review of my status. I am currently 40 and trying to work through all of the crazy thoughts and feelings with this. If anyone has experience with these mutations or adult diagnosis I would apprecieate feedback.

Thanks!

 

[Apex692]

I am new to the forum and this is my first post, so hello to all. I am currently in the diagnosis process, though some have said the diagnosis is complete. I grew up with cronic sinus infections (5 or more per year) and had sinus surgery at 19. Several weeks of antibiotics tend to help. Due to fertility issues (CBAVD) my wife and I went to a specialist and had some genetic testing where the following mutations were found - D508F and R117H. My sweat test results were borderline. I did not ask what the actual number was, and will at my next appt. I still need to have a head and chest CT and then the doctor told me he would give me a full review of my status. I am currently 40 and trying to work through all of the crazy thoughts and feelings with this. If anyone has experience with these mutations or adult diagnosis I would apprecieate feedback.

Thanks!

 

[Apex692]

I am new to the forum and this is my first post, so hello to all. I am currently in the diagnosis process, though some have said the diagnosis is complete. I grew up with cronic sinus infections (5 or more per year) and had sinus surgery at 19. Several weeks of antibiotics tend to help. Due to fertility issues (CBAVD) my wife and I went to a specialist and had some genetic testing where the following mutations were found - D508F and R117H. My sweat test results were borderline. I did not ask what the actual number was, and will at my next appt. I still need to have a head and chest CT and then the doctor told me he would give me a full review of my status. I am currently 40 and trying to work through all of the crazy thoughts and feelings with this. If anyone has experience with these mutations or adult diagnosis I would apprecieate feedback.

Thanks!

 

[Apex692]

I am new to the forum and this is my first post, so hello to all. I am currently in the diagnosis process, though some have said the diagnosis is complete. I grew up with cronic sinus infections (5 or more per year) and had sinus surgery at 19. Several weeks of antibiotics tend to help. Due to fertility issues (CBAVD) my wife and I went to a specialist and had some genetic testing where the following mutations were found - D508F and R117H. My sweat test results were borderline. I did not ask what the actual number was, and will at my next appt. I still need to have a head and chest CT and then the doctor told me he would give me a full review of my status. I am currently 40 and trying to work through all of the crazy thoughts and feelings with this. If anyone has experience with these mutations or adult diagnosis I would apprecieate feedback.
<br />
<br />Thanks!

 

[JazzysMom]

I am confused as to WHY you are still in a diagnosis progressing stage.

We have many other members with the same mutations as you.

You have CF!

Welcome to the site & please come to us with any ?? you have!

 

[JazzysMom]

I am confused as to WHY you are still in a diagnosis progressing stage.

We have many other members with the same mutations as you.

You have CF!

Welcome to the site & please come to us with any ?? you have!

 

[JazzysMom]

I am confused as to WHY you are still in a diagnosis progressing stage.

We have many other members with the same mutations as you.

You have CF!

Welcome to the site & please come to us with any ?? you have!

 

[JazzysMom]

I am confused as to WHY you are still in a diagnosis progressing stage.

We have many other members with the same mutations as you.

You have CF!

Welcome to the site & please come to us with any ?? you have!

 

[JazzysMom]

I am confused as to WHY you are still in a diagnosis progressing stage.
<br />
<br />We have many other members with the same mutations as you.
<br />
<br />You have CF!
<br />
<br />Welcome to the site & please come to us with any ?? you have!

 

[hopesiris]

Hi there. I was diagnosed 2 years ago at age 36. They are now doing your health baseline so they know what your starting point is and can track your health from here. Once that is done they will complete your treatment plan (meds, vest, exercise, nutrition...). PM me if you want to chat. I know it's a lot to take in and it really does take time to understand it all and come to terms with it. It's been over 2 years and I still come to this site every day so that I don't feel alone with my CF.

 

[hopesiris]

Hi there. I was diagnosed 2 years ago at age 36. They are now doing your health baseline so they know what your starting point is and can track your health from here. Once that is done they will complete your treatment plan (meds, vest, exercise, nutrition...). PM me if you want to chat. I know it's a lot to take in and it really does take time to understand it all and come to terms with it. It's been over 2 years and I still come to this site every day so that I don't feel alone with my CF.

 

[hopesiris]

Hi there. I was diagnosed 2 years ago at age 36. They are now doing your health baseline so they know what your starting point is and can track your health from here. Once that is done they will complete your treatment plan (meds, vest, exercise, nutrition...). PM me if you want to chat. I know it's a lot to take in and it really does take time to understand it all and come to terms with it. It's been over 2 years and I still come to this site every day so that I don't feel alone with my CF.

 

[hopesiris]

Hi there. I was diagnosed 2 years ago at age 36. They are now doing your health baseline so they know what your starting point is and can track your health from here. Once that is done they will complete your treatment plan (meds, vest, exercise, nutrition...). PM me if you want to chat. I know it's a lot to take in and it really does take time to understand it all and come to terms with it. It's been over 2 years and I still come to this site every day so that I don't feel alone with my CF.

 

[hopesiris]

Hi there. I was diagnosed 2 years ago at age 36. They are now doing your health baseline so they know what your starting point is and can track your health from here. Once that is done they will complete your treatment plan (meds, vest, exercise, nutrition...). PM me if you want to chat. I know it's a lot to take in and it really does take time to understand it all and come to terms with it. It's been over 2 years and I still come to this site every day so that I don't feel alone with my CF.

 

[Alyssa]

My kids are 21 and 23 years old. They both have the same gene mutations as you. I know of a couple of other adults with the same mutations too. Generally speaking this combination usually results in no digestive issues and more mild lung symptoms for a longer period of time than others with CF.

Both of my kids have similar treatment regiments and enjoy very good health - they have never been hospitalized, or needed IV medications. My daughter has needed oral antibiotics in the past and has only needed Tobi once.

Welcome to the website.

 

[Alyssa]

My kids are 21 and 23 years old. They both have the same gene mutations as you. I know of a couple of other adults with the same mutations too. Generally speaking this combination usually results in no digestive issues and more mild lung symptoms for a longer period of time than others with CF.

Both of my kids have similar treatment regiments and enjoy very good health - they have never been hospitalized, or needed IV medications. My daughter has needed oral antibiotics in the past and has only needed Tobi once.

Welcome to the website.

 

[Alyssa]

My kids are 21 and 23 years old. They both have the same gene mutations as you. I know of a couple of other adults with the same mutations too. Generally speaking this combination usually results in no digestive issues and more mild lung symptoms for a longer period of time than others with CF.

Both of my kids have similar treatment regiments and enjoy very good health - they have never been hospitalized, or needed IV medications. My daughter has needed oral antibiotics in the past and has only needed Tobi once.

Welcome to the website.

 

[Alyssa]

My kids are 21 and 23 years old. They both have the same gene mutations as you. I know of a couple of other adults with the same mutations too. Generally speaking this combination usually results in no digestive issues and more mild lung symptoms for a longer period of time than others with CF.

Both of my kids have similar treatment regiments and enjoy very good health - they have never been hospitalized, or needed IV medications. My daughter has needed oral antibiotics in the past and has only needed Tobi once.

Welcome to the website.

 

[Alyssa]

My kids are 21 and 23 years old. They both have the same gene mutations as you. I know of a couple of other adults with the same mutations too. Generally speaking this combination usually results in no digestive issues and more mild lung symptoms for a longer period of time than others with CF.
<br />
<br />Both of my kids have similar treatment regiments and enjoy very good health - they have never been hospitalized, or needed IV medications. My daughter has needed oral antibiotics in the past and has only needed Tobi once.
<br />
<br />Welcome to the website.