Hi everyone and thank you soooo much for the warm welcomes.
It is wonderful to see how active this board is.<br>
Several of you asked about my story so here it is:<br>
<br>
I had a very healthy childhood. I do not recall ever being
sick other than chicken pox and having a cold once a year.
Nothing to make my parents question my health. I was
(and still am over weight) so I did have a bit of a breathing
problem when I was in PE or running a lot-but I was always told it
was because I was over weight and out of shape.<br>
So life went on and in my early 20's my Mom passed away. I
began to be sick more often. Lots of upper respitory type things
and also a nose full of polyps (that disappeared completely-and
never had them again.) I thought part of my breathing problems were
I was going out to dance clubs and in Louisiana you can smoke
anywhere, so I figured I was breathing in lots of smoke (Not to
mention the occasional cigarette I would smoke with a beer)Soooo,
life again went on and I was working in Down town New Orleans at a
Travel company. It was my job to wine and dine the clients so
they would bring their international groups to New Orleans and let
our company plan their stay-(Lots of limos, eating and late nights)
well one day I was walking to a event and my ankle became swollen 4
times its size. My boss immediately sent me to the hospital.
They checked for blood clots etc and I was fine, however I
had serious scarring in my lungs. The Doctor came running out
into the waiting room histerical that she had NEVER seen anything
like it in her life and I needed to see a specialist immediately.
So I did. I found out that I had Chronic Bronchitis. He
did a bronch scope and found that I had a microbaterium chelonea.
(Spelling?) He also told me he wasn't sure how long I would live?
QUITE A QUACK!! Needless to say I didn't go to him very long.
And to make long story short I saw 8 more doctors before it
dawned on one to test me for CF. And sure enough 2 sweat test
came back positive-very low positive. My genetic test came back
that I have ( Delta F 508) and the other one is a very rare
mutation (A455E). I was told his is the reason I have no pancreatic
disease and look very healthy. That my CF is mild. Amazingly
enough, my husband and I had been trying to have a baby for 3
years. The day I found out I had CF was 3 days before I was
to start invetro. And for my husband and I there was no question
that we wanted put my health in any jeopardy. So we adopted 4
beautiful children, through Children and Families in our state. It
has been the most wonderful thing that has ever happened to us!!!
We have 4 beautiful healthy children. 2 boys-12 and 10 and 2 girls
8 and 7.<br>
Well, then my PFTs were like 69. I had been very
healthy. Well, the last few visits my Dr wont let me do the PFT
because it upsets me so much,I get my self all worked up and
immediately sick. The last time I did it was 31-up from the
time before at 28. There is no explanation why it has changed so
drastically. ( Personally think it is my weight-so I have been
working on it) My weight is up and down (I usually am around
240-250) At the time it fell, I had lost a bunch of weight. I
don't need oxygen.<br>
Right now I am feeling good. A little limited when I do alot
of walking. I do cough alot of ugly junk up. Laying down has
become a pain because I cough and cough. My meds are: I do my
vest and pulmozyme. I use my albuterol pump if I need it (But it
never does much for me) I also take Musinex. I also take an anti
inflammatory that I cannot seem to function without. I
am definitely not the text book picture of a CFer-when I go to
clinic or was in the hospital (only hospitalized 1 time for 4 days)
people would just come in and stare at me as if I were a purple and
pink polka dotted dinosaur and was extinct for 3000 years.
<br>
So that is my story. I would love to hear your feed
back!!!<br>
Best wishes to all of you!!!<br>
Marcy<br>
"Life is not measured by the breaths you take, but by the
moments that take your breath away."<br>
<br>
It is wonderful to see how active this board is.<br>
Several of you asked about my story so here it is:<br>
<br>
I had a very healthy childhood. I do not recall ever being
sick other than chicken pox and having a cold once a year.
Nothing to make my parents question my health. I was
(and still am over weight) so I did have a bit of a breathing
problem when I was in PE or running a lot-but I was always told it
was because I was over weight and out of shape.<br>
So life went on and in my early 20's my Mom passed away. I
began to be sick more often. Lots of upper respitory type things
and also a nose full of polyps (that disappeared completely-and
never had them again.) I thought part of my breathing problems were
I was going out to dance clubs and in Louisiana you can smoke
anywhere, so I figured I was breathing in lots of smoke (Not to
mention the occasional cigarette I would smoke with a beer)Soooo,
life again went on and I was working in Down town New Orleans at a
Travel company. It was my job to wine and dine the clients so
they would bring their international groups to New Orleans and let
our company plan their stay-(Lots of limos, eating and late nights)
well one day I was walking to a event and my ankle became swollen 4
times its size. My boss immediately sent me to the hospital.
They checked for blood clots etc and I was fine, however I
had serious scarring in my lungs. The Doctor came running out
into the waiting room histerical that she had NEVER seen anything
like it in her life and I needed to see a specialist immediately.
So I did. I found out that I had Chronic Bronchitis. He
did a bronch scope and found that I had a microbaterium chelonea.
(Spelling?) He also told me he wasn't sure how long I would live?
QUITE A QUACK!! Needless to say I didn't go to him very long.
And to make long story short I saw 8 more doctors before it
dawned on one to test me for CF. And sure enough 2 sweat test
came back positive-very low positive. My genetic test came back
that I have ( Delta F 508) and the other one is a very rare
mutation (A455E). I was told his is the reason I have no pancreatic
disease and look very healthy. That my CF is mild. Amazingly
enough, my husband and I had been trying to have a baby for 3
years. The day I found out I had CF was 3 days before I was
to start invetro. And for my husband and I there was no question
that we wanted put my health in any jeopardy. So we adopted 4
beautiful children, through Children and Families in our state. It
has been the most wonderful thing that has ever happened to us!!!
We have 4 beautiful healthy children. 2 boys-12 and 10 and 2 girls
8 and 7.<br>
Well, then my PFTs were like 69. I had been very
healthy. Well, the last few visits my Dr wont let me do the PFT
because it upsets me so much,I get my self all worked up and
immediately sick. The last time I did it was 31-up from the
time before at 28. There is no explanation why it has changed so
drastically. ( Personally think it is my weight-so I have been
working on it) My weight is up and down (I usually am around
240-250) At the time it fell, I had lost a bunch of weight. I
don't need oxygen.<br>
Right now I am feeling good. A little limited when I do alot
of walking. I do cough alot of ugly junk up. Laying down has
become a pain because I cough and cough. My meds are: I do my
vest and pulmozyme. I use my albuterol pump if I need it (But it
never does much for me) I also take Musinex. I also take an anti
inflammatory that I cannot seem to function without. I
am definitely not the text book picture of a CFer-when I go to
clinic or was in the hospital (only hospitalized 1 time for 4 days)
people would just come in and stare at me as if I were a purple and
pink polka dotted dinosaur and was extinct for 3000 years.
<br>
So that is my story. I would love to hear your feed
back!!!<br>
Best wishes to all of you!!!<br>
Marcy<br>
"Life is not measured by the breaths you take, but by the
moments that take your breath away."<br>
<br>