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

[Veneicia]

Stacey~ Thank you so much for your kind words! I'm sorry to hear your son has had to stuggle being sick I keep seeing and hearing about treatments...may I ask what kind he recieves?- coming from first hand experience it's rough, but I couldn't imagine seeing my kids constantly sick w/ no relief until finally years later the proper diagnosis was made. I'm not sure which tests they will be preforming on Moday, but I will definately keep you posted, I'm actually interested in the whole genetic make up of it<img src="i/expressions/face-icon-small-smile.gif" border="0">

Thank you again for your support,
Your newly found friend,
Veneicia

 

[Veneicia]

Stacey~ Thank you so much for your kind words! I'm sorry to hear your son has had to stuggle being sick I keep seeing and hearing about treatments...may I ask what kind he recieves?- coming from first hand experience it's rough, but I couldn't imagine seeing my kids constantly sick w/ no relief until finally years later the proper diagnosis was made. I'm not sure which tests they will be preforming on Moday, but I will definately keep you posted, I'm actually interested in the whole genetic make up of it<img src="i/expressions/face-icon-small-smile.gif" border="0">

Thank you again for your support,
Your newly found friend,
Veneicia

 

[Veneicia]

Stacey~ Thank you so much for your kind words! I'm sorry to hear your son has had to stuggle being sick I keep seeing and hearing about treatments...may I ask what kind he recieves?- coming from first hand experience it's rough, but I couldn't imagine seeing my kids constantly sick w/ no relief until finally years later the proper diagnosis was made. I'm not sure which tests they will be preforming on Moday, but I will definately keep you posted, I'm actually interested in the whole genetic make up of it<img src="i/expressions/face-icon-small-smile.gif" border="0">

Thank you again for your support,
Your newly found friend,
Veneicia

 

[Veneicia]

Stacey~ Thank you so much for your kind words! I'm sorry to hear your son has had to stuggle being sick I keep seeing and hearing about treatments...may I ask what kind he recieves?- coming from first hand experience it's rough, but I couldn't imagine seeing my kids constantly sick w/ no relief until finally years later the proper diagnosis was made. I'm not sure which tests they will be preforming on Moday, but I will definately keep you posted, I'm actually interested in the whole genetic make up of it<img src="i/expressions/face-icon-small-smile.gif" border="0">

Thank you again for your support,
Your newly found friend,
Veneicia

 

[Veneicia]

Stacey~ Thank you so much for your kind words! I'm sorry to hear your son has had to stuggle being sick I keep seeing and hearing about treatments...may I ask what kind he recieves?- coming from first hand experience it's rough, but I couldn't imagine seeing my kids constantly sick w/ no relief until finally years later the proper diagnosis was made. I'm not sure which tests they will be preforming on Moday, but I will definately keep you posted, I'm actually interested in the whole genetic make up of it<img src="i/expressions/face-icon-small-smile.gif" border="0">

Thank you again for your support,
Your newly found friend,
Veneicia

 

[AbbysMama]

How horrible! I do not wish CF upon you, but I do know what a relief it would be to finally KNOW something and be able to treat it correctly.

I am very interested in what your CF mutations are as there are many folks on here who started presenting symptoms in their childhood and teens, but were misdiagnosed.

Thank you for posting your story. I hope you find out the information you need.

Emily

 

[AbbysMama]

How horrible! I do not wish CF upon you, but I do know what a relief it would be to finally KNOW something and be able to treat it correctly.

I am very interested in what your CF mutations are as there are many folks on here who started presenting symptoms in their childhood and teens, but were misdiagnosed.

Thank you for posting your story. I hope you find out the information you need.

Emily

 

[AbbysMama]

How horrible! I do not wish CF upon you, but I do know what a relief it would be to finally KNOW something and be able to treat it correctly.

I am very interested in what your CF mutations are as there are many folks on here who started presenting symptoms in their childhood and teens, but were misdiagnosed.

Thank you for posting your story. I hope you find out the information you need.

Emily

 

[AbbysMama]

How horrible! I do not wish CF upon you, but I do know what a relief it would be to finally KNOW something and be able to treat it correctly.

I am very interested in what your CF mutations are as there are many folks on here who started presenting symptoms in their childhood and teens, but were misdiagnosed.

Thank you for posting your story. I hope you find out the information you need.

Emily

 

[AbbysMama]

How horrible! I do not wish CF upon you, but I do know what a relief it would be to finally KNOW something and be able to treat it correctly.

I am very interested in what your CF mutations are as there are many folks on here who started presenting symptoms in their childhood and teens, but were misdiagnosed.

Thank you for posting your story. I hope you find out the information you need.

Emily

 

[Alyssa]

Veneicia,

Welcome to the site! Yes, that is a pretty high borderline number - a lot of people with CF have far lower numbers and I'd have to say it would be very strange if they didn't find any CF genes.

Hope they get it straightened out soon and you can start treating with a doctor who believes you have CF and will treat you correctly.

Most people do start feeling better and doing better after they get going with the treatments and preventative stuff. Hopefully you can get going on Pulmozyme, Tobi, Hypertonic Saline and the vest (look into the Respirtech one - I like it better than the Hill-Rom Vest - but either one is better than not having one that's for sure!) Hopefully you have very good health insurance... you are going to need it!

 

[Alyssa]

Veneicia,

Welcome to the site! Yes, that is a pretty high borderline number - a lot of people with CF have far lower numbers and I'd have to say it would be very strange if they didn't find any CF genes.

Hope they get it straightened out soon and you can start treating with a doctor who believes you have CF and will treat you correctly.

Most people do start feeling better and doing better after they get going with the treatments and preventative stuff. Hopefully you can get going on Pulmozyme, Tobi, Hypertonic Saline and the vest (look into the Respirtech one - I like it better than the Hill-Rom Vest - but either one is better than not having one that's for sure!) Hopefully you have very good health insurance... you are going to need it!

 

[Alyssa]

Veneicia,

Welcome to the site! Yes, that is a pretty high borderline number - a lot of people with CF have far lower numbers and I'd have to say it would be very strange if they didn't find any CF genes.

Hope they get it straightened out soon and you can start treating with a doctor who believes you have CF and will treat you correctly.

Most people do start feeling better and doing better after they get going with the treatments and preventative stuff. Hopefully you can get going on Pulmozyme, Tobi, Hypertonic Saline and the vest (look into the Respirtech one - I like it better than the Hill-Rom Vest - but either one is better than not having one that's for sure!) Hopefully you have very good health insurance... you are going to need it!

 

[Alyssa]

Veneicia,

Welcome to the site! Yes, that is a pretty high borderline number - a lot of people with CF have far lower numbers and I'd have to say it would be very strange if they didn't find any CF genes.

Hope they get it straightened out soon and you can start treating with a doctor who believes you have CF and will treat you correctly.

Most people do start feeling better and doing better after they get going with the treatments and preventative stuff. Hopefully you can get going on Pulmozyme, Tobi, Hypertonic Saline and the vest (look into the Respirtech one - I like it better than the Hill-Rom Vest - but either one is better than not having one that's for sure!) Hopefully you have very good health insurance... you are going to need it!

 

[Alyssa]

Veneicia,

Welcome to the site! Yes, that is a pretty high borderline number - a lot of people with CF have far lower numbers and I'd have to say it would be very strange if they didn't find any CF genes.

Hope they get it straightened out soon and you can start treating with a doctor who believes you have CF and will treat you correctly.

Most people do start feeling better and doing better after they get going with the treatments and preventative stuff. Hopefully you can get going on Pulmozyme, Tobi, Hypertonic Saline and the vest (look into the Respirtech one - I like it better than the Hill-Rom Vest - but either one is better than not having one that's for sure!) Hopefully you have very good health insurance... you are going to need it!

 

[Veneicia]

Hi Alyssa~ Thank you for the information and I'm definately going to look into and research them as soon as I'm done writing this!!!, and I know you all have been curious knowing today was the big day of the 2nd test....well my sodium actually went up to 87 and my chloride went up to 57- so the both went up 5-7 points <img src="i/expressions/face-icon-small-sad.gif" border="0">

I think the worst part of it all is the not knowing what to expect....I mean I know I have A LOT of research to do now, and of course once the blood test comes back it will make thing perhaps a bit easier to research the specific genetics part of it....but when it comes down to basics- I mean...does this mean my life expectancy is cut? Or have I surpassed it out of luck? I had to get tested at the Children's hospital- which I hate going to those place just b/c of what it is- I can't see sick kids, I get emotional even when seeing how Strong they are- but we were right inside the same office as the kids Oncologist- well I didn't know what that word meant and neither did my bf, and so he decided to ask the receptionist- well when she said it has to do with cancer, I started looking around at all the kids in the room with me (although some there for other departments) but seeing how they were all so extremely strong- and thinking my god- what I ahve is MINOR compared to what they are going through and I'm scared to death!

I have to say though, I'm really happy to have found this site- I was really wierded out at first thinking to myself- why am I posting my life story- until I saw all of your responses. I really don't have anyone to talk to that will listen anyways, lol, so it's so nice to hear your feedback....even if it's saying..omg Veneicia...just chill!

Ok, so I think I will end on that note for the even b/c it has been an extremely long day! I hope all is well with you all!

Veneicia

 

[Veneicia]

Hi Alyssa~ Thank you for the information and I'm definately going to look into and research them as soon as I'm done writing this!!!, and I know you all have been curious knowing today was the big day of the 2nd test....well my sodium actually went up to 87 and my chloride went up to 57- so the both went up 5-7 points <img src="i/expressions/face-icon-small-sad.gif" border="0">

I think the worst part of it all is the not knowing what to expect....I mean I know I have A LOT of research to do now, and of course once the blood test comes back it will make thing perhaps a bit easier to research the specific genetics part of it....but when it comes down to basics- I mean...does this mean my life expectancy is cut? Or have I surpassed it out of luck? I had to get tested at the Children's hospital- which I hate going to those place just b/c of what it is- I can't see sick kids, I get emotional even when seeing how Strong they are- but we were right inside the same office as the kids Oncologist- well I didn't know what that word meant and neither did my bf, and so he decided to ask the receptionist- well when she said it has to do with cancer, I started looking around at all the kids in the room with me (although some there for other departments) but seeing how they were all so extremely strong- and thinking my god- what I ahve is MINOR compared to what they are going through and I'm scared to death!

I have to say though, I'm really happy to have found this site- I was really wierded out at first thinking to myself- why am I posting my life story- until I saw all of your responses. I really don't have anyone to talk to that will listen anyways, lol, so it's so nice to hear your feedback....even if it's saying..omg Veneicia...just chill!

Ok, so I think I will end on that note for the even b/c it has been an extremely long day! I hope all is well with you all!

Veneicia

 

[Veneicia]

Hi Alyssa~ Thank you for the information and I'm definately going to look into and research them as soon as I'm done writing this!!!, and I know you all have been curious knowing today was the big day of the 2nd test....well my sodium actually went up to 87 and my chloride went up to 57- so the both went up 5-7 points <img src="i/expressions/face-icon-small-sad.gif" border="0">

I think the worst part of it all is the not knowing what to expect....I mean I know I have A LOT of research to do now, and of course once the blood test comes back it will make thing perhaps a bit easier to research the specific genetics part of it....but when it comes down to basics- I mean...does this mean my life expectancy is cut? Or have I surpassed it out of luck? I had to get tested at the Children's hospital- which I hate going to those place just b/c of what it is- I can't see sick kids, I get emotional even when seeing how Strong they are- but we were right inside the same office as the kids Oncologist- well I didn't know what that word meant and neither did my bf, and so he decided to ask the receptionist- well when she said it has to do with cancer, I started looking around at all the kids in the room with me (although some there for other departments) but seeing how they were all so extremely strong- and thinking my god- what I ahve is MINOR compared to what they are going through and I'm scared to death!

I have to say though, I'm really happy to have found this site- I was really wierded out at first thinking to myself- why am I posting my life story- until I saw all of your responses. I really don't have anyone to talk to that will listen anyways, lol, so it's so nice to hear your feedback....even if it's saying..omg Veneicia...just chill!

Ok, so I think I will end on that note for the even b/c it has been an extremely long day! I hope all is well with you all!

Veneicia

 

[Veneicia]

Hi Alyssa~ Thank you for the information and I'm definately going to look into and research them as soon as I'm done writing this!!!, and I know you all have been curious knowing today was the big day of the 2nd test....well my sodium actually went up to 87 and my chloride went up to 57- so the both went up 5-7 points <img src="i/expressions/face-icon-small-sad.gif" border="0">

I think the worst part of it all is the not knowing what to expect....I mean I know I have A LOT of research to do now, and of course once the blood test comes back it will make thing perhaps a bit easier to research the specific genetics part of it....but when it comes down to basics- I mean...does this mean my life expectancy is cut? Or have I surpassed it out of luck? I had to get tested at the Children's hospital- which I hate going to those place just b/c of what it is- I can't see sick kids, I get emotional even when seeing how Strong they are- but we were right inside the same office as the kids Oncologist- well I didn't know what that word meant and neither did my bf, and so he decided to ask the receptionist- well when she said it has to do with cancer, I started looking around at all the kids in the room with me (although some there for other departments) but seeing how they were all so extremely strong- and thinking my god- what I ahve is MINOR compared to what they are going through and I'm scared to death!

I have to say though, I'm really happy to have found this site- I was really wierded out at first thinking to myself- why am I posting my life story- until I saw all of your responses. I really don't have anyone to talk to that will listen anyways, lol, so it's so nice to hear your feedback....even if it's saying..omg Veneicia...just chill!

Ok, so I think I will end on that note for the even b/c it has been an extremely long day! I hope all is well with you all!

Veneicia

 

[Veneicia]

Hi Alyssa~ Thank you for the information and I'm definately going to look into and research them as soon as I'm done writing this!!!, and I know you all have been curious knowing today was the big day of the 2nd test....well my sodium actually went up to 87 and my chloride went up to 57- so the both went up 5-7 points <img src="i/expressions/face-icon-small-sad.gif" border="0">

I think the worst part of it all is the not knowing what to expect....I mean I know I have A LOT of research to do now, and of course once the blood test comes back it will make thing perhaps a bit easier to research the specific genetics part of it....but when it comes down to basics- I mean...does this mean my life expectancy is cut? Or have I surpassed it out of luck? I had to get tested at the Children's hospital- which I hate going to those place just b/c of what it is- I can't see sick kids, I get emotional even when seeing how Strong they are- but we were right inside the same office as the kids Oncologist- well I didn't know what that word meant and neither did my bf, and so he decided to ask the receptionist- well when she said it has to do with cancer, I started looking around at all the kids in the room with me (although some there for other departments) but seeing how they were all so extremely strong- and thinking my god- what I ahve is MINOR compared to what they are going through and I'm scared to death!

I have to say though, I'm really happy to have found this site- I was really wierded out at first thinking to myself- why am I posting my life story- until I saw all of your responses. I really don't have anyone to talk to that will listen anyways, lol, so it's so nice to hear your feedback....even if it's saying..omg Veneicia...just chill!

Ok, so I think I will end on that note for the even b/c it has been an extremely long day! I hope all is well with you all!

Veneicia