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CF Progresion

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littledebbie

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

"the end result is always the same,"....



The end result of "life" is the same for everyone, not just those with cf.</end quote></div>
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Why thank you, I'm sure we all forgot that. And it is so relevant here.
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I believe it was rather clear she meant ...the result is we die of CF. which not EVERYONE will do.
 
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littledebbie

New member
Then I guess it would have been to tricky to just write...enjoy each day?.<br><br>And, I thought she was rather seeing the big picture, I guess it's all in your perspective.
 
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luke

Guest
For the record I think Charlotte's question was wanting to gauge what to expect as her childs grows up with this diease, not making sure that we all die. And yes, at times we all need a little sugar coating of the realities of the real world. Certainly I know statistics say that I will die long before any one I know or love that is my age. But that doesn't mean I want to be reminded of it. I mean how cool would it be at my next birthday day party surrounded by everyone I care about for someone to say "to bad you might not be here next year, huh?". That is just poor taste and bad manners.

An example..lets say you have a friend that is overweight and unattractive. Now you know she's fat and ugly and she knows she's fat and ugly. Let's throw into the mix that no one asked her to the prom and she is upset about it. Do you console her by reminding her that if she wasn't so fat and ugly she might have got a date? Anyway....not apples to apples I know but I think you get my meaning. Sometimes people know the truth..it just dosen't help anyone to say it say it out loud.


Luke
 
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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>luke</b></i>

For the record I think Charlotte's question was wanting to gauge what to expect as her childs grows up with this diease, not making sure that we all dies. And yes, at times we all need a little sugar coating of the realities of the real world. Certainly I know statistics say that I will die long before any one I know or love that is my age. But that doesn't mean I want to be reminded of it. I mean how cool would it be at my next birthday day party surrounded by everyone I care about for someone to say "to bad you might not be here next year, huh?". That is just poor taste in bad manners.



An example..lets say you have a friend that is overweight and unattractive. Now you know she's fat and ugly and she knows she's fat and ugly. Let's throw into the mix that no one asked her to the prom and she is upset about it. Do you console her by reminding her that if she wasn't so fat and ugly she might have got a date? Anyway....not apples to apples I know but I think you get my meaning. Sometimes people know the truth..it just dosen't help anyone to say it say it out loud.





Luke</end quote></div>


Well said Luke. Manners go a long way and they cost nothing. There is a way of saying things, I know exactly what you mean. We certainly don't want to be reminded of it cos it is always in the back of our minds. We just gotta keep positive right? If we don't stay positive there is no hope at all. People like you put things in perspective and keep me going right!

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

New member
Don't ask questions you don't want answers to.

If you ask about progression, you'll get answers about progression.

Progression is from mild>moderate>severe>end stage>death.

Pace is hard to predict for an individual.

We all know the mean and median survival rates......
 
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anonymous

New member
and if you want consolation, ask to be consoled - don't ask about progression.

(Particulary important if you're posting in the Adults section where most folks have had more than 18 years to terms with their reality and are comfortable being pretty blunt about it....)
 
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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

and if you want consolation, ask to be consoled - don't ask about progression.



(Particulary important if you're posting in the Adults section where most folks have had more than 18 years to terms with their reality and are comfortable being pretty blunt about it....)</end quote></div>


I do want answers, I didn't say I didn't. Makes me wonder though why you can't put your name.

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

New member
Just another thought about the bluntness that sometimes shows up on the Adults forum.

I see that as a feature - not a bug (to use computer software terms).
Think you could too.

Just think, with any luck at all, 16 years down the road you too will be living with an 18-year old who has enough acceptance and bravado to be throwing around the names/stages of progression and know the median/mean survival age in 2022 for someone with CF.

Now that's something to look forward to ;-)
 
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LisaV

New member
Well, actually, on second thought, your daughter at 18 will be talking with you bluntly about the facts of her life with CF <i>only</i> if she thinks you can handle it. If she thinks you can't, she won't be talking to you about CF at all - which, unless she finds her way up here - means she'll be pretty alone with her emotions about it all.

I know you wouldn't want that. So part of your challange (the challange of any parent of a CFer) is to be able to be sort of matter of fact about it all early and whatever else it takes so that you can protect them rather than putting them in the position of having to protect you.

Need both denial and matter of factness to help folks live fully, I'm thinking.
 
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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LisaV</b></i>

Well, actually, on second thought, your daughter at 18 will be talking with you bluntly about the facts of her life with CF <i>only</i> if she thinks you can handle it. If she thinks you can't, she won't be talking to you about CF at all - which, unless she finds her way up here - means she'll be pretty alone with her emotions about it all.



I know you wouldn't want that. So part of your challange (the challange of any parent of a CFer) is to be able to be sort of matter of fact about it all early and whatever else it takes so that you can protect them rather than putting them in the position of having to protect you.



Need both denial and matter of factness to help folks live fully, I'm thinking.</end quote></div>
 
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anonymous

New member
I get the feeling you are criticising me a bit here?

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

New member
Not a whit, Charlotte.
With your kid only 2 you've got miles to go before I'd say you were asking your kid to protect you.

Just thinking out loud.

I know one family real real real well where even the words "CF" were not allowed to be said out loud in front of the kids that had it (even as teenagers). Always broke my heart - made me and my husband crazy - to visit. I was "shushed" once when I said out loud that the docs though my husband's bronchiectasis was just like CF bronchiectasis and were treating it that way.

They're young adults now and it still isn't mentioned in front of them - even with one going for transplant evaulation. (And that one real real angry I might add.)

Makes for some very weird family gatherings..... And very tough to know how to offer support..... Can't even share morbid jokes (now that's a test for me).

Not even really criticizing that family (Think they just started out thinking that havin CF be a "family secret" would give their kids a more normal life and never really figured out that that path could backfire down the road.)

And more than one adult has posted in a thread or a blog that even though the idea of death hovered over them as children they were never allowed to talk about it in the sense that when they did bring it up their mother/father couldn't handle it. Harriet McBryde Johnson in her book "Too Late to Die Young" has a wonderful couple of lines about this. She says about an experience wheen she was kindergarten age "I didn't know the word, but I knew my mother was in denial."

But sometimes we learn from good examples -- and sometimes bad....
Just sharing....
 
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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LisaV</b></i>

Well, actually, on second thought, your daughter at 18 will be talking with you bluntly about the facts of her life with CF <i>only</i> if she thinks you can handle it. If she thinks you can't, she won't be talking to you about CF at all - which, unless she finds her way up here - means she'll be pretty alone with her emotions about it all.



I know you wouldn't want that. So part of your challange (the challange of any parent of a CFer) is to be able to be sort of matter of fact about it all early and whatever else it takes so that you can protect them rather than putting them in the position of having to protect you.



Need both denial and matter of factness to help folks live fully, I'm thinking.</end quote></div>


Hey Lisa

What gives you the impression that I can't handle it?

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

New member
Not going to argue with you, Charlotte.

Was just entering into your and luke's discussion.

I am sure you can handle it.

And IM not-so-HO, part of handling it (for both of us) would be dropping this right now.
 
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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LisaV</b></i>

Not going to argue with you, Charlotte.



Was just entering into your and luke's discussion.



I am sure you can handle it.



And IM not-so-HO, part of handling it (for both of us) would be dropping this right now.</end quote></div>


Who's arguing? Not me, sorry if you thought I was. I was just thinking out loud.

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

New member
Charlotte, there's a great chance you're child will live a good, full life. You asked about progression, not death, and as you've heard, it is different for each person. But you're right: It is also likely to be different for a person born in 2003 than for one born years ago. You have every reason to be optimistic, just as you have reason to be concerned. Don't let the "bluntness" discourage you.
 
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