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CF Progresion

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Augustmom0003

New member
I really had no problem with the statement "the end result is the same". I think it's the bickering and other lack of sensitivity I've seen. It's also the fact that, at the beginning, people were more worried about who was being blunt and who was sugar coating than answering her question.

Also, in 30 years, who knows if the end result will be the same?


Amanda
Mommy to Kenzie (5, wocf) and Ethan (2, wcf)
 
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Emily65Roses

New member
For the bickering, you can look back at Luke. At the risk of sounding like an 8-year-old, "he started it."

No one can predict the future. (If you want to play the "what will we know in 30 years? card, you can do that forever, it's kind of a waste of time). But as of what we know right now, the end result IS always the same. Just a matter of time.

Lisa is right. We are offering advice, with the best intentions, to the best of our ability. If you need softer blows, I would suggest you move to the families section. That's not to get rid of you or any such garbage. If you'd rather stay here, by all means, do so. But for your own sanity, given what we see with new parents, YOU ("you" being used in general here for new parents as a group) might be better off in the families section. That's us, looking out for you... not telling you what to do.
 
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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Augustmom0003</b></i>

Also, in 30 years, who knows if the end result will be the same?

q]

<br>
This is another good reason it would probably be better to post it in Families. I am not saying this to banish I am saying to protect and from a "relevance" issue. Todays adult CFer's experience of "Progression" is going to be soo different from the children who have been born in the last 5 years or so.
<br>
If you ask us the answer is going to be a little harsh becasue the truth as we know it is harsh. There are limited ways to say "you die" in a soft way. And since for many of us it's a "current" reality we are a little raw with it.
<br>
It's one thing to talk quietly about a elephant in your living room but you start screaming pretty loud when it's standing on your neck.
<br>
To answer the question if someone is still interested my blog has my story if you check it out and go to the first few entries (organized on the side by month). You can follow my progression to the little twit I am now.
A lot of people posted their "health histories" in the first few entries of their blogs. A pretty good source I think.
<br>
I would also like to add i know a few of the new parents only chat at me sometimes or read my blog a little and I think can only take me in small doses. But I like them very much and I think they like me too. I think we are just both in emotional points right now so we take each other in small doses. And i do not blast new parents, i sometimes refrain from commenting but I do not go attacking them. i always try to keep my Mom in mind and think "what would i want someone to have said to her".
<br>
I do get mad when people post a question and then someone gets mad at an answer and goes ape, but that was not the poster in this case as was acknowleged.
<br>
littledebbie
 
F

Faust

New member
New parents should look on the bright side though. Their children born today, have a much better chance of living a full life than the current adult cystics did. Before long CF will be looked at more as a chronic condition where the symptoms are easily treated, like say diabetes, more so than a terminal disease.
 
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anonymous

New member
I absolutely agree with sean on this.
And the teenagers and adults on this forum are the ones walking point for the babies on this one - they are the walking "lab rats".
Every single treatment my husband received for bronchiectasis he received first during stage 3 trials (or off label).
But being a lab rat or walking point is no fun and not reassuring at all - and nothing to do with anything but your eyes wide open. Hence, again, a real difference if viewpoint between the adults and the new parents.
-lisav
 
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Augustmom0003

New member
Emily and LisaV, points well taken. When I hear that we want it sugar coated b/c we're living in denial...some might be, yes. I do appreciate a <i>little </i>sugar...if not, I might hide in my bed all day and how would that benefit my kids? lol! The facts are hard for parents to deal with, but we do. I know what's ahead and when people say that my son must have a mild case and how lucky he is, I want to SCREAM at them. I know what progression is (but remember, new moms honestly may not yet. we are all told different things by our doctors) and I know that his "luck" could change tomorrow. He's only 2. But, then again, yes, some of the bluntness I could do without. I'll try to understand that you're offering advice with the best of intentions...

Is there a happy medium????

As for predicting the future...no...not trying to "playing that card". Not denying what the future currently holds, but being positive about the possibilities.
 
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Augustmom0003

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

New parents should look on the bright side though. Their children born today, have a much better chance of living a full life than the current adult cystics did. Before long CF will be looked at more as a chronic condition where the symptoms are easily treated, like say diabetes, more so than a terminal disease.</end quote></div>



Thank you Sean...I think if you had posted this a few days ago, we wouldn't have 8 pages on this thread...lol!!!!
 
2

2005CFmom

Super Moderator
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SeanDavis</b></i>

New parents should look on the bright side though. Their children born today, have a much better chance of living a full life than the current adult cystics did. Before long CF will be looked at more as a chronic condition where the symptoms are easily treated, like say diabetes, more so than a terminal disease.</end quote></div>





Do you truly believe this? Or are you just saying this because it is what parents want to hear?

I think you are right...it may be controlled someday...never cured. But I doubt that even the controls will come in time to help the majority of people with disease right now.
 
A

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Augustmom0003</b></i>

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



New parents should look on the bright side though. Their children born today, have a much better chance of living a full life than the current adult cystics did. Before long CF will be looked at more as a chronic condition where the symptoms are easily treated, like say diabetes, more so than a terminal disease.</end quote></div>


It's interesting you hear you say that Amanda.
That we think that that the new babies with CF will have so much easier lives than we or are loved ones have had. That CF will become like diabetes in just a few years. God knows I hope so. And I see the trend. One more year of life expectency each year.

But I think that might be sugar coating again. My husband lived to 59 with bronchiectasis but it wasn't my 59. His body was just as worn out and beaten up as my dad's was when he died at 92. And my husband was doingg treatments 4 hours a day and IVs 4 times a year to stay alive those last few years. So yes, I agree with sean that CF will stop being a disease that kills children and start being a disease that adults live with. But it won't be an easy disease to live with - not even as "easy" as diabetes is now (which isn't all that easy for older adults by the way....)
-lisav




Thank you Sean...I think if you had posted this a few days ago, we wouldn't have 8 pages on this thread...lol!!!!</end quote></div>
 
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luke

Guest
I had decided I was going to just leave this alone and let the few who like to read their own comments go on and on. But..."Luke started it"; "Luke was judging and name calling"? I really don't see it...I merely shed light on a comment that I felt inappropriate. I stand by my statement and it seems that many have agreed with me either publicly or privately. I am not the only one who feels Allie's comments were inappropriate I am just the one who brought it up. Anyway....I will again bow out let you guys talk amongst yourselves.

***edited to add***

I just read "julies thread" and I just wondered why everyone got so mad. She was just practicing the brutal honesty we need in the adult forum, right?


have a nice evening...


luke
 
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Ratatosk

Administrator
Staff member
A gentleman I know from work just stopped by my office and said, I used to have two godchildren with cf. One died at 16 and I don't now what happened to the other one -- I don't think he passed on -- he's probably 30. Then he gave me a check for $50 for the great strides walk this weekend. I know he meant "I have a connection to cf 'cuz I knew someone who had it, just lost track of him". But someone always has to say, I knew someone wcf, but they're dead now. Should I have burst into tears and made him feel horrible because of the death comment. Nahhh! He gave me $50!!!! Whatta guy!

As far as progression -- my mother is the queen of morbid. Even before my son was diagnosed with CF, she'd bring fun to any social event with her death stories. A few years ago she had to call and tell me where a keepsake was 'cuz she was sure she was going to die. When I was three -- she'd yell at me and my brother to go out and help dad shovel snow 'cuz otherwise he was going to "die of a heart attack". Err, dad was 28 at the time and in perfect health. Still is..
 
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JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

<div class="FTQUOTE"><begin quote>By the way, no parent wants things to be sugar coated</end quote></div>



Don't be so fast to assume. I've talked to more than one parent of a CFer who very clearly wants just that. Maybe you don't, and good for you, because it's not the way to go. But there are, whether or not you think so, people who do prefer to live that way. And that's generally, what I (among others who have said so) don't want here.</end quote></div>




I still have to sugar coat things for my Mom & I was diagnosed 31 years ago! Its a PITA (pain in the a$$) for me because I walk on eggshells!
 
A

anonymous

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

New parents should look on the bright side though. Their children born today, have a much better chance of living a full life than the current adult cystics did. Before long CF will be looked at more as a chronic condition where the symptoms are easily treated, like say diabetes, more so than a terminal disease.</end quote></div>


Dont mean to be sound rude Sean, but not all of us parents have the luxury to be able to look on the bright side. My boys r only 11 and have had less than half their lung function since 6 years old. They have been in and out of hospital since birth some times for months at a time.
Mel
 
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HairGirl

New member
Charlotte, I don't know if it's too late to add something...just my personal experience, I have had an older brother with CF and a younger brother with CF, they have both passed away and of course I have not, really no difference that we can see, we have the same mutations, bugs, therapy, living environment etc... so to me you don't know and can't tell. We never talked about our life like we wouldn't live to be adults, only one of us made it to adulthood, but I am an optimist and look forward to the future, even though I don't have the best health, I love life!
 
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anonymous

New member
Julie wrote "there are some who are in their 40's and 50's still living a life as if they didn't have CF" and I have to really disagree with that. Y

es, they are in the 40s and 50s but they are NOT living their lives as if they don't have CF. Healthy 40 and 50 year olds in my experience hardly ever think about their bodies and their most complicated bodily maintenance function is brushing their teeth. Folks who are in their 40s and 0s and living with CF, are monitoring their bodies almost every moment of the day, often spending hors a day on treatments and often going into the hospital for IVs or getting IVs at home. Most are on oxygen 24/7.

If you have CF and you make it to your 40-50s then your CF has progrossed to severe or end stage. I have never heard of a 50 year old CFer with mild CF.

-lisaV
whose husband lived till 59 with bronchiectasis..
so been there and done that
 
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anonymous

New member
Well I am thrilled to here that there are people who are dx'd in their 40s and 50s, but completely without symptoms. Jusst out of curiousity, why were these tested in the first place if they were asymptomatic? Can you point me to an article or two that would have information about this?

Sorry to be so dense, but what do "SD" and "AD: mean? Are these medical acronyms that I'm not familiar with?

-lisav
 
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