Question for Adults with CF

A

anonymous

New member
My step-son has CF, he is 11 years old. I don't think he realizes the seriousness of this disease, although I could be wrong. I've been in his life since he was 7 and I feel he should know more about Cystic Fibrosis than he does. Am I wrong? I just feel he should be given the oppurtunity to meet other kids with CF, I think it would be very beneficial. This is kind of a delicate question, I don't want to sound, or come across insensative. But how old were you when you learned the seriousness of this disease and the life long problems or the life expectantcy? How did you react? Should we protect him from the truth as long as we can, and just let him learn on his own?
I want to send him to a CF Camp, I've learned from listening to others of CF sites that these camps were some of the best times of their lives and they met friends they kept for life. Or would this be a bad decision, my husband doesn't want him to be around other CF'ers for the posability of getting sick from them. He also doesn't want him to see children that are very sick because he doesn't want him to think that could happen to him. Any advice would be greatly appreciated.
Thanks,
Jen<img src="i/expressions/rose.gif" border="0">
 
A

anonymous

New member
I think that your step son should go on living the way he has been. And its hard to be in contact with other CF kids as thats how infections start etc..... he will come to terms with things on his own. I am sure he is well aware of his disease and nowadays there are so many advancements in the care of CF that ppl with CF live long healthy lives. There are new medications coming out everyday.
Many going on to college, getting married and having a family. Please just be there for him to supprt him but do not get all negative about his life expectancy etc..... Everyone is different and as long as he takes care of himself and take all his meds he will do amazingly well....... I always had the support of my family and he will have to go through the teenage years and the rebellion etc which all a part of growing up. But try your best not to over protect him as this may make him feel worse. I hope this helped!
Stay positive <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

anonymous

New member
I dont know how much input I have to give you because my twins are only almost 3 mths(both w/ CF), but I do have an aunt that is 38 w/ CF. First off it is not good to have him around of a bunch of kids W/ CF. His dad is right!! Secondly, why would you want to tell him the seriousness of the disease and " life expectancy"??? That is what I dont underestand.... do you know how serious his case of CF is that you can tell him that?? No one knows, that is the hard part. He could have a very mild case. What is your life expectancy?? What are your other childrens life expectancy??? Dont know???? Well then you would not know his either would ya??? I cant tell you how to inform him or what you should say to him, but I am sure the CFers on here would know alot more then me but please dont act towards him like you are on here, be positive and fill his mind with positive not negative. I am sure that everyone with CF has to stay as positive that they can to BEAT this disease!!! I dont mean to come across rude or anything like that but the fact is, you are not going to know any of your ?s until you run into them until then let him be a normal little boy.... by the time he gets older they could (they WILL) find some really good stuff to take also!!!

Take care and best wishes, Jen
 
A

anonymous

New member
I definitely do not think you should send him to a CF camp, NO WAY. in fact, do they even exist anymore? I am sure they were great experiences for people when they went in the past but we know SO much more now, and he should really be protected from the possibility of catching any bugs like pseudamonas, cepacia, or others. These bugs are what make us cf people sick, not just 'having cf.' I am assuming he is pretty healthy and if you want him to stay that way i would suggest keeping him away from other kids with cf, that is the best thing you can do!

Like the others said, there is no way of knowing what his case is. Life expectancy is just a number, and moreso with this disease than any because each case differs SO drastically from the next. the age 32 (which is what i think it is right now) is just as arbitrary to me as 10, 21, or 50. He's an 11 year old kid, he does not need to make CF his whole life if he doesnt need to. The important thing is making sure he understands that he has to take his meds, but every kid will go through a rebellious phase and often get sick from it, so dont completely fall apart when he does. Its the only way we can learn!

Caitlin
 
A

anonymous

New member
First of all there are so many different mutations out there of this disease and every single one of us is different! this is why so many ppl are misinformed about this disease and automatically think that its a death sentence. Please educate yourselves and the ppl around you and know that you can live a HEALTHY happy life with CF. I am sorry if i am coming across in the wrong way but please just be there for you step son and love him. Thats what he needs and just guide him in the right direction. 11 year olds today are quiet advanced so i am sure he knows what CF is all about. Please i know its hard but i too have CF and i have had it since i was born and i am now 30. So i know i have a long way to go and nothing is going to bring me down. Keep fighting. Take care!
 
E

Emily65Roses

New member
I always have the same answer for these types of questions. I knew all of it since before I can remember. I mean obviously my parents didn't tell me "Hey you're going to die young!" when I was 5, but they told me what I needed to know at an age appropriate level. I don't remember ever learning that I was going to die from CF. I've just always known. I wouldn't hide it and let him find out "on his own" because that generally means he'll learn from some website or book (many of which are outdated and give worse information than is generally true). This usually ends up in resentment towards the parents because they never told the child themselves. Who better to hear it from than your parents, really? I mean it's not fun to learn, but I think the parents are the best resource to learn from. They're the closest to the child, and are going to be understanding and calm and loving about it. If the kid learns from a book, the pages can't hug him.

CF camp is your decision. I used to go to CF parties and functions when I was younger, so I was always around CFers. Over the years, they stopped having them because of the pseudomonas issue. They were fun while they lasted though. If you choose not to risk the cross-contamination, I'd say at least hook him up with some "online friends." Some people he can email or IM with back and forth. He can still relate that way, and there's no risk of him getting whatever the other CFers have. As far as whether or not to expose him physically to other CFers is entirely your family's decision. A lot of people would say absolutely, and a lot of people would say absolutely not. So that one is an individual choice your family has to make.

Uhm, and I don't want to be insensitive either... But I have to point something out. Your husband doesn't want your step-son to think being very sick could happen to him. The thing is, unless something huge comes along in the not too distant future, it's inevitable. Again, it makes more sense to be upfront about it now, because if you hold back information, your kid is liable to be really pissed when he finds it all out from some other source. It's not the greatest thing to learn, but the kid has a right to know what's more than likely ahead of him. He has to learn someday, so why purposely avoid it?

I don't mean to be pessimistic, and that's not the way I mean to come off (though I don't know if I am). But I don't like people that are falsely optimistic either. Try finding a happy medium and being realistic. Don't tell your step-son "Hey you're going to die at 32," because you don't know if that's true. Present him with the information at your disposal, but make sure to tell him that it's an average, which means he could very well live to be older than that. Every CFer is different, it's nearly impossible to say what will happen in the future to kids based on other CFers' cases. You can't, we're all too different. Give him whatever knowledge you have, but make sure that he knows that each and every case is different, and he could go any which way. <img src="i/expressions/rose.gif" border="0">
 
A

anonymous

New member
Just a personal opinion, a child of his age should have a good grasp on what his disease entails and what most the possible effects of it are. My husbands mom and dad delayed in talking to him about a lot of important things such as life expectancy and infertility in males and he unfortunately had to hear it from his doctors. I can't even describe the hurt he says he felt when he heard it from them and not his parents. I think it's better to inform them as much as possible when you feel they are ready because it can be damaging to find out information from others, and you find out later your parents knew but didn't tell you.

Have you tried to get him onto this site? it might help to go through how the teenage and young adult section works. He might feel more comfortable among people his age. Although don't push it either because I am sure you don't want to create a lot of resentment and that is possible as well. If you haven't posted this question on the teen and young adult site, you might want to do that too and just ask for their current ages and opinions of what your "expectations" (for lack of a better word) are. It might help to get some feedback from people his age as well.

Good luck, this is a tough age for any person, but especially under the circumstances.

Julie
 
A

anonymous

New member
Secondly, why would you want to tell him the seriousness of the disease and " life expectancy"???

In response to this question, I didn't say I wanted to give him a life expectancy, I asked, "how old were you when you learned the seriousness of this disease and the life long problems or the life expectantcy the people with CF when they learned of such things."
BIG DIFFERENCE!<img src="i/expressions/face-icon-small-shocked.gif" border="0">
 
A

anonymous

New member
Secondly, why would you want to tell him the seriousness of the disease and " life expectancy"???

In response to this question, I didn't say I wanted to give him a life expectancy, I asked, "how old were you when you learned the seriousness of this disease and the life long problems or the life expectantcy the people with CF."
BIG DIFFERENCE!<img src="i/expressions/face-icon-small-shocked.gif" border="0">

TYPO CORRECTION ^
 
E

Emily65Roses

New member
And in response to that question myself... Even though you're right that no one knows when they're going to die... CFers of any age have a right to know about the CFers before them. No one dies at an exact age, but almost all of us die before "our time." I personally think that's important to know. If not, CFers still have a right to be aware of this information.

It's not important to know this information so that we can dwell on all that junk. Don't get me wrong, it happens sometimes. I have my days where I wonder if I'll ever get married or have kids, etc. But I just think it's very vital information. One thing it does (though I know some healthy people do this too) is make you live for each day. It's done a lot to make me appreciate what I've got when I've got it. And even the healthy people around you learn to pick up this mind-frame (like Mike because of me, or Julie because of her husband). It lets CFers know how strong we are, what CFers before us have gone through. It's kind of like if you're African and have pride that many Africans before you dealt with a lot of junk (slavery, etc) and worked through it. CF isn't wholly who you are, and there are certainly other parts to make up each personality. But CF is a big part, and knowing everything about it allows you to really get a good grasp on who you are. I don't know if this even necessarily makes sense, but learning everything I can about CF makes me feel better about the whole thing. Being knowledgable, having the information, learning new stuff when it comes along. Plus it helps to know as much as possible when making decisions.
 
A

anonymous

New member
Thanks for your insight Emily, very informative. You very much tunned in on my concern, as maybe I didn't express it very clearly. I know he WILL learn on his own about CF and there are alot of things that will be shocking, I don't care how sugarcoated others may try to make it sound. This disease carries some very difficult realities. I do not want to say, "hey your gonna die", that is very cruel. I only wanted to know when some of you learned of the life expectantcy and how you reacted to it. And as you mentioned one of my biggest concerns is from what source he will eventually gather this information from. He is very smart and already spends a lot of time on the internet. I think I will take the suggestion of not sending him to Camp due to the liklihood of him getting sick. I would never want to risk that.
Thanks to everyone for your responses-
 
N

NoDayButToday

New member
Ditto on the whole CF Camp thing- I think they are pretty much obsolete now anyway.
I always knew that I had something called CF, and as I had questions, my mom answered them as honestly as she could. When I was around 8, someone who had CF that I knew died at about 40. This was the first time I think that I really realized that people do die of CF. I think my questions became more serious at this point, but still my mom answered them honestly, but with care. Protecting your stepson from the truth (or hiding it from him) will only make the truth harsher when it comes to light. That's not to say you need to have a formal sit down "CF Lesson" with him, but maybe say something like "Do you ever want to talk to other kids with CF" or "Are there any things that you wonder about CF", casually. Maybe, he could come onto the teen or young people boards on the forum here. Maybe you'll find out he knows more than he lets on, and chooses not to dwell on it. Good luck
 
A

anonymous

New member
I understand where you are coming from but why talk about death at all? People die of many different reasons before their time, not just CFers. I just gave my opinion, I will never tell my children that they have a life expectancy because you dont know if CF will be the cause of your death. It could be ALOT of different things!!!! There are people in their 50s, 60s, 70s that have CF that are still alive. 98% of the people in my family have died before any of those numbers, none of which had CF. Now my aunts life expectancy when she was born was 5 years old, like I said she is now 38.

Jen, sorry I read your that part of your post wrong!!!


Jen
 
E

Emily65Roses

New member
PS Jen -- I don't want you to think I meant I assumed you would say to him "hey you're going to die!" Just using an extreme example. <img src="i/expressions/rose.gif" border="0">
 
E

Emily65Roses

New member
The death thing... My point is simply this:

I know no one knows when they're going to die. I could die from something other than CF. I am aware of this. HOWEVER, more than likely CF will be what kills me, and it will likely be "before my time." No one ever knows, but it's different when you've got something like CF. This metaphor has been used several times on the board, but let me repeat it: Anyone can hit by a train and die. But having CF is like standing on the tracks, watching the train come at you.

Plus there's simply the right to have that knowledge. If you don't tell your kids what the average is, someday... Their doctors, or other kids, or other adults, or a website or a book will tell them. So why not tell them yourself? I imagine the easiest source to learn that kind of information from is your parents.

I realize I may be being a "bummer" to some people. I just really can't stand when people are too optimistic. You can be a positive thinker without being unrealistic. You need to find a place where optimism and realism meet. New therapies and meds are popping up all the time. Transplants are getting safer and getting better results each day. But as a for instance, for someone like me... who was born back in 1984, and is now 21 (tomorrow!), the likelihood of my living to age 70 is really really slim. A CFer who's 11 has a better chance than I do. I just don't want people to be unrealistic and give their kids unrealistic hope. The higher your hope is, the further you fall if it doesn't come true.
 
A

anonymous

New member
Hi Mary,
First my question was, "Should we protect him from the truth as long as we can, and just let him learn on his own?"

And I'm referring to the disease Cystic Fibrosis and what I mean is, should we not put him in a situation like CF camp, where he may see some children that aren't as healthy as he is, which may make him start to question his own health or future which may inturn cause him to worry. In other words if we can avoid a shocking reality, should we? Does that make since? Or should we just put it out there. And no I don't mean by saying, "hey your gonna die at 32", Please understand I love my step-son very much. I am just the type of person that likes to get a lot of information. I'f my child was missing a big toe I'd want to be president of "Parents of children without toes" lol. Its not just CF, I have a craving for information, in my opinion everyone should be very informed about issues they are dealing with. I am currently pregnant and scared to death my baby may have CF, as we discovered I am a carrier of the gene. That is why I am on this website. Anytime something is going on with me or someone in my family I like to be involved and informed. And in my world I can't imagine anyone who wouldn't want to be. But, I don't want to give him access to information that would hurt him. I would never want to hurt him. Maybe I just can't make people understand this, I don't know.
 
A

anonymous

New member
ok now i think that Jen has gotten the point. Everyone here obviously has there own opinions on their disease so lets just drop it please! If ppl are optimistic let them be i am all for optimism and keeping hope alive!
 
N

NoDayButToday

New member
While research is going on as I type, and lung transplants are becoming more successful than ever, the fact is, the average life expectancy is still 32 years old (compared to a US average of maybe 76ish). For kids born today, that will probably be higher. For all I know, next year it will jump to 33. But right now, science is showing us that only half of the patients with CF live beyond 32. There's nothing wrong with having hope, and not discussing death with your kids; it's not a fun topic at all. There is something wrong with flat out denying the fact a CFer will likely die younger. CFers in their 70s do exist, but they are few and far between, unfortunately. Basically, I feel like a child doesn't need to know all this, but if they ask, they should not be totally lied to about reality. At a certain point, a patient has a right to know common facts about their disease and that's one of them.
For the record, I am very optimistic about the future.
 
You must log in or register to reply here.
Top