CF Progresion

[anonymous]

Is it true that CF progresses differently for different people? I have a two year old daughter with CF. She is doing perfectly fine at the moment (touch wood). She has Pseudo, but apart from that is ok.

I would be grateful for your advice.

Charlotte

 

[anonymous]

Sorry spelt progression wrong - still half asleep!<img src="i/expressions/face-icon-small-happy.gif" border="0">
Charlotte

 

[Allie]

That's true, the end result is always the same, but the progression varies a great deal for different people. You never can tell.

 

[dyza]

yes it c an effect each other so differently, there are many factors in this ,lifestyle,compl;iance,m utations etc. etc. Generely speaking, depending on the mutations that they have, it can effect diff parts, some mutations cause more lung problems, while others cause pancreatic problems.....but it is not always the case, thats what makes everyone so different. My son has a mutation that says his pancreas should not work properly, and it is working fine. Good luck

 

[anonymous]

Do you think about your son's condition every day? I seem to worry about my daughter all the time. I know I should just live for each day, but I am just a natural worrier. I get scared cos she is doing so well at the moment and seem to be anxious as if something bad is going to happen all the time.

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

 

[dyza]

Charlotte we know how you feel, our son ,11mth,is pretty much very healthy. We have been told that he has 'mild CF', there are some who don't like that word,-mild-, but its the doctors words, not ours. It dosn't stop us from worrying about his health, either now or in the future. We try to ignore the dx of mild and teart him as he has CF. Maybe its too much to think that he will be healthy his whole life. We tend to jump on imediately any cold that he gets, he has had 4 ,didn't come to anything.

 

[anonymous]

Charlotte,

It's so hard not to worry. I do the same thing. My daughter is only 3 and and a few months. She's been really sick and then she 's been very well. The worry for me is exhausting. The best thing is to really try not to worry. It seems like for me any way it takes practice not to worry, hope this makes sense. Like my daughter takes ballet/tap and I at first worries what if she gets sick from a child in her class(she has not). Then I see how truly happy she is dancing. "tap and ballet make me feel better" my daugher says. She is having her first recital in June. Tell me how cute that 's gonna be. She NEEDS these activities, so I NEED to let her go and enjoy herself. It makes her feel better, just like my daugher says which actually keeps her healthy. It's a process. She starts nursery school in the fall and I worry about that too. I guess what I try to do is be as educated as I can about CF and my daughter so when she gets sick I know what to do.

Rebecca
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/Great_Strides/RebeccaMurray">http://www.cff.org/Great_Strides/RebeccaMurray</a>

 

[anonymous]

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

Charlotte,



It's so hard not to worry. I do the same thing. My daughter is only 3 and and a few months. She's been really sick and then she 's been very well. The worry for me is exhausting. The best thing is to really try not to worry. It seems like for me any way it takes practice not to worry, hope this makes sense. Like my daughter takes ballet/tap and I at first worries what if she gets sick from a child in her class(she has not). Then I see how truly happy she is dancing. "tap and ballet make me feel better" my daugher says. She is having her first recital in June. Tell me how cute that 's gonna be. She NEEDS these activities, so I NEED to let her go and enjoy herself. It makes her feel better, just like my daugher says which actually keeps her healthy. It's a process. She starts nursery school in the fall and I worry about that too. I guess what I try to do is be as educated as I can about CF and my daughter so when she gets sick I know what to do.



Rebecca

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/Great_Strides/RebeccaMurray">http://www.cff.org/Great_Strides/RebeccaMurray</a></end quote></div>

Hi Rebecca

My daughter will be starting Playgroup in September. I'm starting to get anxious about the obvious, but know she needs to go. I always find that the thought of things is always worse, then when it happens it's not so bad after all. Then I think that I have spend all that energy and time worrying for nothing. Just can't help it cos I love her so much. I found that I've got loads of information from this website and is reassuring that people are going exactly through the same things as us. Give me a shout if you ever want to chat.

Take care.

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

 

[luke]

Allie,
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"That's true, the end result is always the same "
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not the most tactful thing to say to a worried mother is it?

Charlotte,

As the mother of a sick child, of course you are going to worry. I will encourage you to try not to. Put your faith in God, your doctors and your relationship with your daughter. Do as the doctors prescribe but let your kid be a kid....I find many people with CF have been "smoothered" by their parents and lash out later. Play groups are good, school is great, just look around on the site, many of us have full and successful lives. Nothing should stop you from expecting the same for your daughter.

Good luck

Luke

 

[Allie]

She asked, I answered. Cf is progressive, it's different for everyone, but barring an act of god, which I've never heard of happening, it's fatal. That's all I said. CF is what it is, don't get mad at me for that. Lay off.

 

[anonymous]

Thanks 4 that Luke. I might be calling on you again! I understand why Allie said that though even though it wasn't what I wanted to hear.

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

 

[anonymous]

Charlotte,

Last fall I took my daughter for a second opinion to a different pulmonologist. He basically said, the goal is to keep your child healthy and their lungs healthy so they can take advantage of the new treatments that are coming out for CF, ie.CFTR correction, new antibitotics, etc(I am not a scientist although my husband is , a little knowledge is scary!) They are hopeful that Cf will be a disease to manage not to die from, this is not the case now however. The key word is hopeful. Be realistic but please don't ever take the hope away.

Rebecca

 

[LisaV]

Yes, it is progressive. Yes. the progression is different for everyone.

Allie is right that CF will kill you finally -- unless somethin else gets you first (the "bus" idea - or the "jealous wife" idea). Or unless they come up with some even more effective treatments.

From readin on the board here and personal experience I can say the proression varies wildly, but still 2-year olds very rarely die from CF any more and more folks are seeing their 2-year old children, and some even get to bounce their 2-year old grandchildren on their knee.

You manage what you can - and leave the rest to the gods.

What saw me through was the old sayings (as dumb as they might be):
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"Don't trouble trouble, 'till trouble troubles you."

"Grant me the serenity to accept the things I can not change, The courage to change the thins I can. And the wisdom to know the difference."

"A day at a time." "Let go and let G-d."
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And IMHO Denial is a highly underrated coping mechanism (as long as it not so severe that it gets in the way of checkups and regular meds and treatments).

Allie and I can't do denial any more in our "old age", but I recommend it for others. It is, after all, the major coping mechanism that most healthy people use for dealing with their own mortality and the mortality of those they love.

ANd hope (like for new treatments). Hope is always good.

 

[anonymous]

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

Charlotte,



Last fall I took my daughter for a second opinion to a different pulmonologist. He basically said, the goal is to keep your child healthy and their lungs healthy so they can take advantage of the new treatments that are coming out for CF, ie.CFTR correction, new antibitotics, etc(I am not a scientist although my husband is , a little knowledge is scary!) They are hopeful that Cf will be a disease to manage not to die from, this is not the case now however. The key word is hopeful. Be realistic but please don't ever take the hope away.



Rebecca</end quote></div>

Rebecca,

That's what keeps us going I guess,the fact that our daughter has been born in 2003 and that new treatments are coming along all the time. I also believe and am hopeful that CF could be a disease to manage in the future.

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

 

[JazzysMom]

Its already been stated that CF progressives differently for everyone. The variables involved for each individual makes a combined difference. Some are born fighting like hell then throw in lack of meds or non compliance & other crap & you have a bad combo. On the other hand CF is a tricky sucker where even those that start out with the best of health & are compliant can run into a lovely bacteria & go down hill. Then there are those with are well/moderate & birth & hold there own even with non compliance. Do you want to hear this? Probably not! I already consider CF a manageable disease since there is no cure, but I guess what you mean is "manageable with no progression". Your child is very fortunate to have such advanced knowledge & meds at an early age. I mean, we old timers, get the benefit also, but most of us already have extensive damage from the years without such advances. It is natural to worry. I think all parents (even those to non CFers) worry about their kids. BUT all you can do is your best & if you believe in God,Pray!

 

[thelizardqueen]

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

Allie,

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"That's true, the end result is always the same "

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not the most tactful thing to say to a worried mother is it?</end quote></div>

Its the truth though. Would you rather she sugar coat CF? Besides Charlotte does now that that is the end result, an I would hate for anyone to look at CF with rose coloured glasses.

Its different for everyone. I knew a few people who had the same mutation as I, and they have been long gone for years. I'm 24, and am just now progressing a bit more. Everyone worries about CF - whethere you are a mother of a child with CF, or you actually have CF. I know that I am for the most part a "healthy" CFer, but this last infection I have not been able to bounce back like I usually do, so I am of course worried that this is it. This is the big one. Most likely I will go in for IVs (1st time in about 10 years), and its scary to know that CF still has me in its grip. But, you get set backs, you deal with it as best you can, you get healthy again, and you keep on trying and working at it. That's the best you can do. Have faith that it will work out.

 

[JennifersHope]

FOr me, I don't think the rest of my body is going to hold up long enough for me to die of CF, my lungs are still in good shape, way better then my heart and other vital organs.. ALL of which are not CF related....

Anyway...

When I was two years old, I don't know exactly what the life expectancy was for someone with CF ( I am now 33)... I think it was very low maybe into the teens at best..each year the average life expectancy goes up, which is especially helpful for a two year old. I think I just read that the last average age expectancy is almost 35 or 36. THat is a long way off for your daughter and I can almost promise by then the age will have gone up a great deal.. At least if things keep progressing the way they do.

You have a lot of good reasons to have good hope for the future for your daughter. I don't think every single person who is born with CF now is going to die the same way, many of us will, but especially not the children who are so young now.. Look at the progress we have made in the 30 + years I have been alive..

Also, I have a lot of friends who did need a lung transplant, I know lung transplants come with a set of their own problems but I do have a good amount of friends who are several years out from their transplant and have almost normal lives.

I believe as medicine advances, the complications of transplant will be reduced, I also believe that they are making good progress with treatments in CF.

My best advice that I can give is not to focus on the future as best as possible, NO ONE IS PROMISED THE FUTURE, I see this truth all the time being that I work in an Emergency room. I think it is a good idea to focus on the positive steps and advancement of the average age expectancy, love your daughter and don't shelter her to much...(it doesn' work anyway)

Jennifer

 

[Ricky]

Hey allie it's Ricky just checking to see if your're still pissed at me. I'm chatting with icefisherman right now.

 

[littledebbie]

LizaV: I totally agree with you a little denial I believe can be a very good thing. I would encourage a little denial before I would encourage believing in a cure, that's just me though. <br><br>I think for a new Mom of a CFer I would say be honest with yourslef, learn everything, then pack all that info into a bag in your brain and push it into the back...archive it. I know that's probably not easy, but I think everyone will be happier and healthier for it. I don't mean denial as in denial...don't do treatments...I mean denial of....this disease is going to take my child no matter what we do and this knowledge makes it hard for us all to breath. Take that and pack it up and put it away as best you can. You will know where you put it if you need it. <br><br>

I would have said the same as Allie and since that appears to not have been appreciated I will refrain form the last sentiment. So yes, it's very different for everyone. Some people like to think that mutation and care makes a big difference but i believe that some of it is care and some of it is luck. I think your mutation has very little to do with it. I think care can only take you so far and if you are unlucky and catch a bad bug or very lucky and go 10 yrs without culturing Pseudo it makes a huge difference. Catching a bad bug can be the equivalent of getting hit by a truck for some and for others it's like another inconvenience. See it's all very random ..... not very comforting...I know.

 

[anonymous]

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

The end result of "life" is the same for everyone, not just those with cf.