Newly diagnosed

sunflower

New member
Hi

I am just looking for some help and to be clearer in my dx's. First, before I go on I am so happy to be apart of this site which I joined in Sept. I WOULD BE lost
without the people on the site and those that have helped me out. I am so greatfull.

I was dx's three years ago at the age of 33yrs. However I did spend a lot of time being unwell from the age of 6yrs old with Ashtma (CF that my doctors did not know) I was very ill at 18yrs old up until 24yrs old. I then fell extremely ill at 27yrs old and again Was bed bound (housebound) for 2years.

I had a good year and half and then everything fell apart at the age of 27yrs old up until now. I am asking does it getting better can I ever have a few years again being untouched by IV'S.
I am wondering if anyone has my mutations and how they are doing! Just to get a picture on things and where you might be at. However, I realise we are all different and no two Cferes are the same.

I was looking through the forum and a guy had emailed in regarding his new dx's and his mutation genes. Thought it might help me to see if anyone has my mutations G.

I always seem to be on IV'S and since May I have been on them four times lasting three weeks. In Sept I was told I had B.Cenocepacia it was growing a month before I fell ill. Four times it showed up in the sameple until the last sample on the 10th of Dec. I am hoping it's gone.
I have taking on the advise u have given and a very dear person on the site to me. That is to exercise, take meds always and relax and take every day as it comes. I was told two weeks ago I need my gall bladder out!?

Thanks for your help.

--------------------------
sunnflower
36yrs old
dx's 33yrs old, CF/ABPA/B.CC
 

sunflower

New member
Hi

I am just looking for some help and to be clearer in my dx's. First, before I go on I am so happy to be apart of this site which I joined in Sept. I WOULD BE lost
without the people on the site and those that have helped me out. I am so greatfull.

I was dx's three years ago at the age of 33yrs. However I did spend a lot of time being unwell from the age of 6yrs old with Ashtma (CF that my doctors did not know) I was very ill at 18yrs old up until 24yrs old. I then fell extremely ill at 27yrs old and again Was bed bound (housebound) for 2years.

I had a good year and half and then everything fell apart at the age of 27yrs old up until now. I am asking does it getting better can I ever have a few years again being untouched by IV'S.
I am wondering if anyone has my mutations and how they are doing! Just to get a picture on things and where you might be at. However, I realise we are all different and no two Cferes are the same.

I was looking through the forum and a guy had emailed in regarding his new dx's and his mutation genes. Thought it might help me to see if anyone has my mutations G.

I always seem to be on IV'S and since May I have been on them four times lasting three weeks. In Sept I was told I had B.Cenocepacia it was growing a month before I fell ill. Four times it showed up in the sameple until the last sample on the 10th of Dec. I am hoping it's gone.
I have taking on the advise u have given and a very dear person on the site to me. That is to exercise, take meds always and relax and take every day as it comes. I was told two weeks ago I need my gall bladder out!?

Thanks for your help.

--------------------------
sunnflower
36yrs old
dx's 33yrs old, CF/ABPA/B.CC
 

sunflower

New member
Hi

I am just looking for some help and to be clearer in my dx's. First, before I go on I am so happy to be apart of this site which I joined in Sept. I WOULD BE lost
without the people on the site and those that have helped me out. I am so greatfull.

I was dx's three years ago at the age of 33yrs. However I did spend a lot of time being unwell from the age of 6yrs old with Ashtma (CF that my doctors did not know) I was very ill at 18yrs old up until 24yrs old. I then fell extremely ill at 27yrs old and again Was bed bound (housebound) for 2years.

I had a good year and half and then everything fell apart at the age of 27yrs old up until now. I am asking does it getting better can I ever have a few years again being untouched by IV'S.
I am wondering if anyone has my mutations and how they are doing! Just to get a picture on things and where you might be at. However, I realise we are all different and no two Cferes are the same.

I was looking through the forum and a guy had emailed in regarding his new dx's and his mutation genes. Thought it might help me to see if anyone has my mutations G.

I always seem to be on IV'S and since May I have been on them four times lasting three weeks. In Sept I was told I had B.Cenocepacia it was growing a month before I fell ill. Four times it showed up in the sameple until the last sample on the 10th of Dec. I am hoping it's gone.
I have taking on the advise u have given and a very dear person on the site to me. That is to exercise, take meds always and relax and take every day as it comes. I was told two weeks ago I need my gall bladder out!?

Thanks for your help.

--------------------------
sunnflower
36yrs old
dx's 33yrs old, CF/ABPA/B.CC
 

briar2004

New member
HI SUNFLOWER I AM A NEW MOM TO THIS AS WELL MY SON BRIAR IS 2 YRS OLD AND HE WAS DX IN APRIL 2005 HE TESTED +FOR THE DF508 THE MOST COMMON CF ONE HE HAS HAD A HARD TIME BUT THE PAST YEAR HE HAS NOT SEEN THE HOSPITAL. HE HAS A SWEAT TEST IN APRIL OF 2005 AND IT WAS 120. JUST TODAY HE GOT A NEW DOCTOR AND HE WANTED EVERTHING RE TESTED AND THE SWEAT TEST WAS 80. SO YOU SEE I HAVE ? REGARDING THE 2 DIFFERENT READINGS WELL SOMETIMES I THINK THAT I MAY HAVE IT BUT THEY WILL NOT TEST ME BECAUSE I DONT HAVE ANY INSURANCE ...

WE WOULD REALLY LOVE TO HERE FROM YOU AND WOULD LOVE TO KNOW HOW YOU ARE DOING NOW .. TISH
 

briar2004

New member
HI SUNFLOWER I AM A NEW MOM TO THIS AS WELL MY SON BRIAR IS 2 YRS OLD AND HE WAS DX IN APRIL 2005 HE TESTED +FOR THE DF508 THE MOST COMMON CF ONE HE HAS HAD A HARD TIME BUT THE PAST YEAR HE HAS NOT SEEN THE HOSPITAL. HE HAS A SWEAT TEST IN APRIL OF 2005 AND IT WAS 120. JUST TODAY HE GOT A NEW DOCTOR AND HE WANTED EVERTHING RE TESTED AND THE SWEAT TEST WAS 80. SO YOU SEE I HAVE ? REGARDING THE 2 DIFFERENT READINGS WELL SOMETIMES I THINK THAT I MAY HAVE IT BUT THEY WILL NOT TEST ME BECAUSE I DONT HAVE ANY INSURANCE ...

WE WOULD REALLY LOVE TO HERE FROM YOU AND WOULD LOVE TO KNOW HOW YOU ARE DOING NOW .. TISH
 

briar2004

New member
HI SUNFLOWER I AM A NEW MOM TO THIS AS WELL MY SON BRIAR IS 2 YRS OLD AND HE WAS DX IN APRIL 2005 HE TESTED +FOR THE DF508 THE MOST COMMON CF ONE HE HAS HAD A HARD TIME BUT THE PAST YEAR HE HAS NOT SEEN THE HOSPITAL. HE HAS A SWEAT TEST IN APRIL OF 2005 AND IT WAS 120. JUST TODAY HE GOT A NEW DOCTOR AND HE WANTED EVERTHING RE TESTED AND THE SWEAT TEST WAS 80. SO YOU SEE I HAVE ? REGARDING THE 2 DIFFERENT READINGS WELL SOMETIMES I THINK THAT I MAY HAVE IT BUT THEY WILL NOT TEST ME BECAUSE I DONT HAVE ANY INSURANCE ...

WE WOULD REALLY LOVE TO HERE FROM YOU AND WOULD LOVE TO KNOW HOW YOU ARE DOING NOW .. TISH
 

NoExcuses

New member
Tish welcome to the forum.

may i request that you turn off the caps? it's very difficult to read a post in all caps.

thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

NoExcuses

New member
Tish welcome to the forum.

may i request that you turn off the caps? it's very difficult to read a post in all caps.

thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

NoExcuses

New member
Tish welcome to the forum.

may i request that you turn off the caps? it's very difficult to read a post in all caps.

thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Scarlett81

New member
Hi hon,

I've been thinking about you alot! Are you still on IVs?

I'll pm you shortly!

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Scarlett81

New member
Hi hon,

I've been thinking about you alot! Are you still on IVs?

I'll pm you shortly!

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Scarlett81

New member
Hi hon,

I've been thinking about you alot! Are you still on IVs?

I'll pm you shortly!

<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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