New to the game

[Mommafirst]

Ya know, its a very interesting question, Alyssa. My Alyssa's only real symptom of CF was the MI. As they were testing, they kept thinking well maybe it won't really be CF. But you know how the "she looks too healthy" thing goes.

All I can say about the fact that she had an MI and is yet PS is that she has a really weird combination of mutations. Mine is the somewhat more common W1282X -- is the ashkenazie jewish one and is a class one, usually associated with quite severe symptoms. The other one is EXTREMELY rare, according to Ambry, she is one of just 6 patients diagnosed with this gene mutation. Only one of those 6 is an adult, and he was diagnosed through CBAVD. 5 of the 6 of them are PS, but one is PI; so basically we don't know what is going to happen as this progresses. I've been told that its possible for her to become PI in time. I hope not, but we'll have to wait and see.

The doctors have not said that this is odd, but it sounds odd ot me -- I mean wouldn't an MI mean there is some pancreatic problem. The doctors did actually said that maybe the MI wasn't CF related -- but she does have CF, so how can that be?????? Just a really bizarre coincidence that forced us to get her diagnosed???? I don't know, I have more questions than answers I suppose.

Sorry for taking over your post Jason!!!

 

[usedtobeinca]

Thanks for the welcome everyone! This board is great and I think will be extremely helpful in getting us back to emotional 'fighting weight.' Just keeping afloat sometimes can be difficult (Thomas is on cold #3 since Oct. - but thankfully no hospital) - but as I read the many stories of courage on these boards - I realize what I'd always suspected - we are not alone in this. Actually just found out that my 2nd cousin's 9mo old son was just diagnosed wcf yesterday. I'll be making sure to let them know that they too are not alone.

Thanks all - we look forward to visitng and contributing often <img src="i/expressions/face-icon-small-smile.gif" border="0">

J, L & T

 

[usedtobeinca]

Thanks for the welcome everyone! This board is great and I think will be extremely helpful in getting us back to emotional 'fighting weight.' Just keeping afloat sometimes can be difficult (Thomas is on cold #3 since Oct. - but thankfully no hospital) - but as I read the many stories of courage on these boards - I realize what I'd always suspected - we are not alone in this. Actually just found out that my 2nd cousin's 9mo old son was just diagnosed wcf yesterday. I'll be making sure to let them know that they too are not alone.

Thanks all - we look forward to visitng and contributing often <img src="i/expressions/face-icon-small-smile.gif" border="0">

J, L & T

 

[usedtobeinca]

Thanks for the welcome everyone! This board is great and I think will be extremely helpful in getting us back to emotional 'fighting weight.' Just keeping afloat sometimes can be difficult (Thomas is on cold #3 since Oct. - but thankfully no hospital) - but as I read the many stories of courage on these boards - I realize what I'd always suspected - we are not alone in this. Actually just found out that my 2nd cousin's 9mo old son was just diagnosed wcf yesterday. I'll be making sure to let them know that they too are not alone.

Thanks all - we look forward to visitng and contributing often <img src="i/expressions/face-icon-small-smile.gif" border="0">

J, L & T

 

[bmombtoo]

Welcome Jason!!!!!!!

My son is 12 but was just diagnosed this past September so I often feel like a new comer. Enjoy all the "ups" you can find, even the little ones. You'll find this site a good place to put things in perspective and to help you cope when you are felling tired, overwhelmed, and that life is unfair.

 

[bmombtoo]

Welcome Jason!!!!!!!

My son is 12 but was just diagnosed this past September so I often feel like a new comer. Enjoy all the "ups" you can find, even the little ones. You'll find this site a good place to put things in perspective and to help you cope when you are felling tired, overwhelmed, and that life is unfair.

 

[bmombtoo]

Welcome Jason!!!!!!!

My son is 12 but was just diagnosed this past September so I often feel like a new comer. Enjoy all the "ups" you can find, even the little ones. You'll find this site a good place to put things in perspective and to help you cope when you are felling tired, overwhelmed, and that life is unfair.

 

[ddawes27]

Daddy2Noah.........I absolutely LOVE your theory on life!!.......My devoutly Catholic Mom made me read a book before she died.......It was called "embraced by life" In that book I learned that we all choose each other and our experiences here in life. My little cutie pie has CF, and I never feel all alone with him. I try to think about what could be the purpose of our connection..............besides the fact that he is the cutie-pie, Love and purpose of my life!.........He happens to have 2 Aunts who LOVE a cause to fight for!....My father has even gone to a CF convention. I am embarassed to say that my Dad has a CF magnet on his car.......but I don t!

 

[ddawes27]

Daddy2Noah.........I absolutely LOVE your theory on life!!.......My devoutly Catholic Mom made me read a book before she died.......It was called "embraced by life" In that book I learned that we all choose each other and our experiences here in life. My little cutie pie has CF, and I never feel all alone with him. I try to think about what could be the purpose of our connection..............besides the fact that he is the cutie-pie, Love and purpose of my life!.........He happens to have 2 Aunts who LOVE a cause to fight for!....My father has even gone to a CF convention. I am embarassed to say that my Dad has a CF magnet on his car.......but I don t!

 

[ddawes27]

Daddy2Noah.........I absolutely LOVE your theory on life!!.......My devoutly Catholic Mom made me read a book before she died.......It was called "embraced by life" In that book I learned that we all choose each other and our experiences here in life. My little cutie pie has CF, and I never feel all alone with him. I try to think about what could be the purpose of our connection..............besides the fact that he is the cutie-pie, Love and purpose of my life!.........He happens to have 2 Aunts who LOVE a cause to fight for!....My father has even gone to a CF convention. I am embarassed to say that my Dad has a CF magnet on his car.......but I don t!