diagnosed today *also posted in newly diagnosed

O

oatmeal28

New member
Hi everyone,

I have been a part of this site for awhile now and have been most appreciative of everyone's support and information. I got my diagnosis today. I have the deltaF508 and rare mutation Q1291R. Has anyone ever heard of this? or have it? As you can imagine I will have many questions...I am on pulmozyme currently and using a Flutter. My lung function is normal right now and they are testing for other issues now. I just wanted to write that this 2 year journey has finally came to a resolution! My name is Emily and I am 29 years old living in Queens, NY.


Talk soon,
Emily
 
O

oatmeal28

New member
Hi everyone,

I have been a part of this site for awhile now and have been most appreciative of everyone's support and information. I got my diagnosis today. I have the deltaF508 and rare mutation Q1291R. Has anyone ever heard of this? or have it? As you can imagine I will have many questions...I am on pulmozyme currently and using a Flutter. My lung function is normal right now and they are testing for other issues now. I just wanted to write that this 2 year journey has finally came to a resolution! My name is Emily and I am 29 years old living in Queens, NY.


Talk soon,
Emily
 
O

oatmeal28

New member
Hi everyone,
<br />
<br />I have been a part of this site for awhile now and have been most appreciative of everyone's support and information. I got my diagnosis today. I have the deltaF508 and rare mutation Q1291R. Has anyone ever heard of this? or have it? As you can imagine I will have many questions...I am on pulmozyme currently and using a Flutter. My lung function is normal right now and they are testing for other issues now. I just wanted to write that this 2 year journey has finally came to a resolution! My name is Emily and I am 29 years old living in Queens, NY.
<br />
<br />
<br />Talk soon,
<br />Emily
 
G

Giggles

New member
Sorry to hear about the CF diagnosis, but as you wrote it has been a 2 year journey for you at the very least you have some answers now. I do not have that gene you mentioned I have two of the DF508. Good to hear your lung function is good, keep it up!


Breathe Easy!
Jennifer 38 with CF and CFRD
 
G

Giggles

New member
Sorry to hear about the CF diagnosis, but as you wrote it has been a 2 year journey for you at the very least you have some answers now. I do not have that gene you mentioned I have two of the DF508. Good to hear your lung function is good, keep it up!


Breathe Easy!
Jennifer 38 with CF and CFRD
 
G

Giggles

New member
Sorry to hear about the CF diagnosis, but as you wrote it has been a 2 year journey for you at the very least you have some answers now. I do not have that gene you mentioned I have two of the DF508. Good to hear your lung function is good, keep it up!
<br />
<br />
<br />Breathe Easy!
<br />Jennifer 38 with CF and CFRD
 
M

mom2lillian

New member
I too was diagnosed in my twenties after a long journey, I am now 30 years old, contact me any time.

I wont say sorry for the dx because for me it was a relief to just 'finally' have an answer and get appropriate treatment. I hope you can move forward from here.
 
M

mom2lillian

New member
I too was diagnosed in my twenties after a long journey, I am now 30 years old, contact me any time.

I wont say sorry for the dx because for me it was a relief to just 'finally' have an answer and get appropriate treatment. I hope you can move forward from here.
 
M

mom2lillian

New member
I too was diagnosed in my twenties after a long journey, I am now 30 years old, contact me any time.
<br />
<br />I wont say sorry for the dx because for me it was a relief to just 'finally' have an answer and get appropriate treatment. I hope you can move forward from here.
 
N

NYCLawGirl

New member
hi and welcome. i think i answered another one of your threads in the newly diagnosed section once about clinics in NYC, but i'm so happy to hear that you at least have some answers. i was diagnosed as an infant, so can't help you there, but i'm 28 and live in manhattan, so if you need a local contact to talk to please feel free to get in touch. i think maybe you're seeing my doctor up at columbia now?

sorry that you have a reason to join this community, but i think you'll find it super helpful!

piper
 
N

NYCLawGirl

New member
hi and welcome. i think i answered another one of your threads in the newly diagnosed section once about clinics in NYC, but i'm so happy to hear that you at least have some answers. i was diagnosed as an infant, so can't help you there, but i'm 28 and live in manhattan, so if you need a local contact to talk to please feel free to get in touch. i think maybe you're seeing my doctor up at columbia now?

sorry that you have a reason to join this community, but i think you'll find it super helpful!

piper
 
N

NYCLawGirl

New member
hi and welcome. i think i answered another one of your threads in the newly diagnosed section once about clinics in NYC, but i'm so happy to hear that you at least have some answers. i was diagnosed as an infant, so can't help you there, but i'm 28 and live in manhattan, so if you need a local contact to talk to please feel free to get in touch. i think maybe you're seeing my doctor up at columbia now?
<br />
<br />sorry that you have a reason to join this community, but i think you'll find it super helpful!
<br />
<br />piper
 
O

oatmeal28

New member
Hi thanks everyone! I feel better having a diagnosis, but it's definitely overwhelming and a lot of information (especially explaining it to my family) yes Piper you did respond I think to one of my posts before I remember <img src="i/expressions/face-icon-small-smile.gif" border="0"> I see Dr. Claire Keating and there is another doctor there, but I forget her name(I think her first name is Emily). They have been wonderful so far. I am still trying to take it all in and will definitely let you know if I need to talk!

have a good night everyone~emily
 
O

oatmeal28

New member
Hi thanks everyone! I feel better having a diagnosis, but it's definitely overwhelming and a lot of information (especially explaining it to my family) yes Piper you did respond I think to one of my posts before I remember <img src="i/expressions/face-icon-small-smile.gif" border="0"> I see Dr. Claire Keating and there is another doctor there, but I forget her name(I think her first name is Emily). They have been wonderful so far. I am still trying to take it all in and will definitely let you know if I need to talk!

have a good night everyone~emily
 
O

oatmeal28

New member
Hi thanks everyone! I feel better having a diagnosis, but it's definitely overwhelming and a lot of information (especially explaining it to my family) yes Piper you did respond I think to one of my posts before I remember <img src="i/expressions/face-icon-small-smile.gif" border="0"> I see Dr. Claire Keating and there is another doctor there, but I forget her name(I think her first name is Emily). They have been wonderful so far. I am still trying to take it all in and will definitely let you know if I need to talk!
<br />
<br />have a good night everyone~emily
 
N

NYCLawGirl

New member
oh, okay. i actually see dr. dimango b/c when i started with her she was the only doc (dr. keating just joined last year). they're both super wonderful though -- i've seen dr. keating during hospitalizations and like her a lot. and yes, dr. dimango's first name is emily <img src="i/expressions/face-icon-small-wink.gif" border="0">

good night to you as well!
 
N

NYCLawGirl

New member
oh, okay. i actually see dr. dimango b/c when i started with her she was the only doc (dr. keating just joined last year). they're both super wonderful though -- i've seen dr. keating during hospitalizations and like her a lot. and yes, dr. dimango's first name is emily <img src="i/expressions/face-icon-small-wink.gif" border="0">

good night to you as well!
 
N

NYCLawGirl

New member
oh, okay. i actually see dr. dimango b/c when i started with her she was the only doc (dr. keating just joined last year). they're both super wonderful though -- i've seen dr. keating during hospitalizations and like her a lot. and yes, dr. dimango's first name is emily <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />good night to you as well!
 
C

chrozzo

New member
sorry to hear Emily...things could be worse though...we have a difficult situtation to deal with, but life can still be beautiful!
 
C

chrozzo

New member
sorry to hear Emily...things could be worse though...we have a difficult situtation to deal with, but life can still be beautiful!
 
You must log in or register to reply here.
Top