According to the CF Foundation's National Patient Registry, the median age of survival for a person with CF is 33.4 years. As more advances have been made in the treatment of CF, the number of adults with CF has steadily grown. Today, nearly 40 percent of the CF population is age 18 and older.
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Question for Adults with CF
- Thread starter anonymous
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NoDayButToday
New member
<blockquote>Quote<br><hr>According to the CF Foundation's National Patient Registry, the median age of survival for a person with CF is 33.4 years. <hr></blockquote>
I stand corrected <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm too lazy to edit my previous post, so just plug in 33.4 for 32 when you read.
I stand corrected <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm too lazy to edit my previous post, so just plug in 33.4 for 32 when you read.
Emily,
I didn't take your response to be mean. I just felt as thought some others took my comment the wrong way. I was really asking for adult CF'ers to respond as to when they learned about the facts of CF, and some thought I meant I wanted to tell him he was going to die. I just wanted to make it clear I would never tell him anything to hurt him.
I didn't take your response to be mean. I just felt as thought some others took my comment the wrong way. I was really asking for adult CF'ers to respond as to when they learned about the facts of CF, and some thought I meant I wanted to tell him he was going to die. I just wanted to make it clear I would never tell him anything to hurt him.
UKBASEDJON
New member
Hi Jen
This is a very much debated subject in the CF community. Personally I think it all boils down to your individual circumstances. If your step son is say quite ill at 11 with CF then a more informative discussion may be needed, however not all parents are perhaps best suited or knowledgeable enough about the CF condition to give this talk. (I am talking generally here not about yourself). If your son is still very well and mainly unaffected then perhaps it is better not to saddle him with all this worry right now.
CF effect people in such different ways, Some times bad and ironically, sometime good. I have found that living with CF is as much about your state of mind as much as your physical health. Personally my parents never discussed CF issues with me. It could be because they felt uncomfortable about such issues, It could be because they always wanted to see the best in any situation, or indeed maybe that they simply didn't know enough about it to give an accurate overview of the future, who knows. On reflection this approach has been both good and bad for me. As I was mainly unaffected by the more serious effects of CF until my mid 20's (now 41) I grew up into adulthood believing that anything was possible in my life and was not held back by any self doubt about my future, however although this was a good thing it made it much harder for me psychologically when my condition did start to deteriorate in my late 20's. And at that time I was not living at home anymore and so wasn't able to take advantage of their support.
One thing to bear in mind is that even if you and your partner do decide at this time to shield your stepson from the wider aspects of CF, the wider world will not I believe be so accommodating. Sooner or later one of his friend will ask him about CF and perhaps say that he saw a program on TV about a CF child that was very sick. When he starts collage or work the issue will become more prominent. We as a CF community may like to give a more positive view of living with CF but the outside World will not. At this time perhaps a little knowledge may be a useful thing.
Many PWCF go on to lead very full and happy lives even if they don't always live as long as other people. Its what you do with your life that counts not how long it lasts. If you do have a chat with your stepson perhaps try to keep it upbeat, maybe have some examples to hand of people that have done well living with this condition. Most of all get the facts about the illness right. And to reiterate what has been said before, remember that CF effects every person differently, what causes a difficulty with one CF patient will not necessarily cause a problem for him.
Regards
Jon
This is a very much debated subject in the CF community. Personally I think it all boils down to your individual circumstances. If your step son is say quite ill at 11 with CF then a more informative discussion may be needed, however not all parents are perhaps best suited or knowledgeable enough about the CF condition to give this talk. (I am talking generally here not about yourself). If your son is still very well and mainly unaffected then perhaps it is better not to saddle him with all this worry right now.
CF effect people in such different ways, Some times bad and ironically, sometime good. I have found that living with CF is as much about your state of mind as much as your physical health. Personally my parents never discussed CF issues with me. It could be because they felt uncomfortable about such issues, It could be because they always wanted to see the best in any situation, or indeed maybe that they simply didn't know enough about it to give an accurate overview of the future, who knows. On reflection this approach has been both good and bad for me. As I was mainly unaffected by the more serious effects of CF until my mid 20's (now 41) I grew up into adulthood believing that anything was possible in my life and was not held back by any self doubt about my future, however although this was a good thing it made it much harder for me psychologically when my condition did start to deteriorate in my late 20's. And at that time I was not living at home anymore and so wasn't able to take advantage of their support.
One thing to bear in mind is that even if you and your partner do decide at this time to shield your stepson from the wider aspects of CF, the wider world will not I believe be so accommodating. Sooner or later one of his friend will ask him about CF and perhaps say that he saw a program on TV about a CF child that was very sick. When he starts collage or work the issue will become more prominent. We as a CF community may like to give a more positive view of living with CF but the outside World will not. At this time perhaps a little knowledge may be a useful thing.
Many PWCF go on to lead very full and happy lives even if they don't always live as long as other people. Its what you do with your life that counts not how long it lasts. If you do have a chat with your stepson perhaps try to keep it upbeat, maybe have some examples to hand of people that have done well living with this condition. Most of all get the facts about the illness right. And to reiterate what has been said before, remember that CF effects every person differently, what causes a difficulty with one CF patient will not necessarily cause a problem for him.
Regards
Jon
Emily65Roses
New member
Jen,
Okay. I was the same. Just making sure you know I wasn't trying to be mean. Haha. <img src="i/expressions/rose.gif" border="0">
Okay. I was the same. Just making sure you know I wasn't trying to be mean. Haha. <img src="i/expressions/rose.gif" border="0">
EmilysMini
New member
as it appears to me, it seems like infroming, or allowing them to find out in some way when they are younger may just be the better idea. For one, the dont understand quite as well and it wont hit them like a ton of bricks all at once. secondly, as they get older they are more likely to drift away from the people that can help them deal with it best. But when a child is (i shall use this case as an example) say 11, he or she are more likely to feel they have the sapport of the people at home. well now that this horse has been beaten.
Later
Later
As Coll pointed out, "median life expectancy" means 50% of CFers die before 33.4, and 50% die after 33.4. Statistically, this is different from "average life expectancy" - which I've never seen disclosed by the CF Foundation. It can be (and probably is) a lower number if the majority of those who die before 33.4 are significantly younger than 33.4.
At any rate, good luck deciding how to handle this discussion!
At any rate, good luck deciding how to handle this discussion!
Jen,
Your step-son does know about his disease, we all did. Something about listening to a doctor tell our parents how sick we are 4 times a year will cause that. I knew when I was 11 wasn't supposed to live to be 18. I knew when I was 18 I wasn't supposed to see 25 and now that I am 29 I am anxiously awaiting the big 30. We all have been told we are sick, unfortunately (fortunately) until we get really sick it doesn't hit home. My advise, let him believe in Santa Clause just provide the presents until he quits believing. When he quits sit him down and be prepared to answer all of the questions honestly. Don't get me wrong, I am not suggesting you act like he doesn't have CF though. Please be sure to keep up with his prescribed regimen and do all you can to keep him healthy and active.
As for CF camp, I went to one in Ohio 15 years ago. The memories I cherish to this day, too bad you guys make me sick!
Luke 29/cf and a RN wife
P.S. My advice for everyone, marry a nurse, they understand everything, not to mention they can start your I.V.s.
Your step-son does know about his disease, we all did. Something about listening to a doctor tell our parents how sick we are 4 times a year will cause that. I knew when I was 11 wasn't supposed to live to be 18. I knew when I was 18 I wasn't supposed to see 25 and now that I am 29 I am anxiously awaiting the big 30. We all have been told we are sick, unfortunately (fortunately) until we get really sick it doesn't hit home. My advise, let him believe in Santa Clause just provide the presents until he quits believing. When he quits sit him down and be prepared to answer all of the questions honestly. Don't get me wrong, I am not suggesting you act like he doesn't have CF though. Please be sure to keep up with his prescribed regimen and do all you can to keep him healthy and active.
As for CF camp, I went to one in Ohio 15 years ago. The memories I cherish to this day, too bad you guys make me sick!
Luke 29/cf and a RN wife
P.S. My advice for everyone, marry a nurse, they understand everything, not to mention they can start your I.V.s.
NoDayButToday
New member
<blockquote>Quote<br><hr>Everyone is different and as long as he takes care of himself and take all his meds he will do amazingly well......<hr></blockquote>
Sorry if I'm misinterpreting this, but as I read that, you seem to think that CF is a completely controllable disease. I'm kind of taking offense to that, because as a person who isn't necesarily doing amazingly well, I feel like that's sort of putting the blame on those with more severe disease on them. I've done my treatments diligently my entire life. I've taken what's considered "good care" of myself. I don't mess around with medicines, have myself around people smoking, I always remember my enzymes etc. etc. So is my decline my fault?
I apologize if this is an attack on whoever posted that. It's actually more of an attack on the idea of CF being a completely manageable disease that a patient has total control over the course of.
Sorry if I'm misinterpreting this, but as I read that, you seem to think that CF is a completely controllable disease. I'm kind of taking offense to that, because as a person who isn't necesarily doing amazingly well, I feel like that's sort of putting the blame on those with more severe disease on them. I've done my treatments diligently my entire life. I've taken what's considered "good care" of myself. I don't mess around with medicines, have myself around people smoking, I always remember my enzymes etc. etc. So is my decline my fault?
I apologize if this is an attack on whoever posted that. It's actually more of an attack on the idea of CF being a completely manageable disease that a patient has total control over the course of.
Jen,
Even if you were curious about explaining the "life expectancy" to him sometime in the near future, I don't think you are wrong for asking a question although I understand that is not what you were asking. Of course you are not God and you don't know when his "time will be up", but as emily and some other posters said, he has every right to and should be informed of that and it isn't too early at age 11 to start discussing something like this that can be put in terms for someone that age to understand. Just think of if he hears the life expectancy statistics from somebody else and finds out you knew but never told him. What was told to my husband when he was younger, about 9-10 (back in the 80's) is that "the AVERAGE life expectancy is 18 years, but there are people who live much longer than that" There is even testament to that fact on this board, people who are 40, 50, 60 and such.
And of course as a mother (and personally a step mother is a mother to me) you would never do anything to hurt him, but sometimes the things you are going to have to tell him will hurt, and he might get mad an upset with you. But down the road the scars from that experience will be much less than the scars if you didn't tell him and somebody else did.
As others have said, it's a personal choice but CF camps are discouraged now because of the knowledge about passing bacteria, and even clinics are so germ conscious as to make CF patients wear masks as a preacaution for themselves and others-but there are other options nowdays as well. this internet site, research on the web, and lots of teens on this site under the teenage category ask for pen pals and such. He might resist the idea at first but keep presenting it to him periodically and let him see you on this site, explain that you are doing it so you can understand better and to help him-stuff like that. He will eventually warm up to the idea. I know my husband (who has CF) hated the fact that I came to this site at first, but now he will sit down with me and read with me and when I post somethign he will say "oh, write this" or "ask this question". I don't think he ever initiates to come on his own but he will look while I am on.
The level of what a child can handle and what he still believes in is also a good indication of when they are ready for more serious talks. I ditto what Luke said in the fact that the approach he suggests might work for some children, while others would benefit more from the facts from the get to. I was always a child to ask millions of questions, but if I was really, really curious about something I was kind of embarassed and shy to ask. Why, still to this day I don't know. But those were the times when my parents stepped in and said, "you are getting to that age where you are probably curious about....... so we should talk about it". Some kids need that approach. Ultimately, you know your own childs needs and ways of learning and readiness best.
There are some good CF books out there that explain things too and you should be able to get them from your CF clinic, but if not the cff foundation has some. I have a good one provided by Solvay Pharmaceuticals Inc called Growing older with CF, and handbook for adults. Even though it says adults, everything in that book is explained in laymans terms so I think most teenaged kids would be able to grasp most of the things in the book. And the things they don't understand would be good starting points for discussion.
I also agree with everyone else who said, don't push it too much. Let him know you are here to talk, answer questions and periodically ask if he wants to talk and read some CF related things with you. But if he is "standoff-ish" about it, give it some time before you ask again. He's approaching his teen years and even without the CF factor, they are very difficult times nowdays, believe me I am not that far removed from that time.
Best of luck and don't ever feel bad for asking a question, even if somebody else tries to tell you it's bad (or whatever was said) you have questions that need to be answered and the bottom line is that sometimes the truth hurts but it needs to be told by someone. if you ever need to talk off this site, I can email you or have my husband email you if you want to talk to an adult CFer.
Julie (wife to Mark 24 w/CF)
Even if you were curious about explaining the "life expectancy" to him sometime in the near future, I don't think you are wrong for asking a question although I understand that is not what you were asking. Of course you are not God and you don't know when his "time will be up", but as emily and some other posters said, he has every right to and should be informed of that and it isn't too early at age 11 to start discussing something like this that can be put in terms for someone that age to understand. Just think of if he hears the life expectancy statistics from somebody else and finds out you knew but never told him. What was told to my husband when he was younger, about 9-10 (back in the 80's) is that "the AVERAGE life expectancy is 18 years, but there are people who live much longer than that" There is even testament to that fact on this board, people who are 40, 50, 60 and such.
And of course as a mother (and personally a step mother is a mother to me) you would never do anything to hurt him, but sometimes the things you are going to have to tell him will hurt, and he might get mad an upset with you. But down the road the scars from that experience will be much less than the scars if you didn't tell him and somebody else did.
As others have said, it's a personal choice but CF camps are discouraged now because of the knowledge about passing bacteria, and even clinics are so germ conscious as to make CF patients wear masks as a preacaution for themselves and others-but there are other options nowdays as well. this internet site, research on the web, and lots of teens on this site under the teenage category ask for pen pals and such. He might resist the idea at first but keep presenting it to him periodically and let him see you on this site, explain that you are doing it so you can understand better and to help him-stuff like that. He will eventually warm up to the idea. I know my husband (who has CF) hated the fact that I came to this site at first, but now he will sit down with me and read with me and when I post somethign he will say "oh, write this" or "ask this question". I don't think he ever initiates to come on his own but he will look while I am on.
The level of what a child can handle and what he still believes in is also a good indication of when they are ready for more serious talks. I ditto what Luke said in the fact that the approach he suggests might work for some children, while others would benefit more from the facts from the get to. I was always a child to ask millions of questions, but if I was really, really curious about something I was kind of embarassed and shy to ask. Why, still to this day I don't know. But those were the times when my parents stepped in and said, "you are getting to that age where you are probably curious about....... so we should talk about it". Some kids need that approach. Ultimately, you know your own childs needs and ways of learning and readiness best.
There are some good CF books out there that explain things too and you should be able to get them from your CF clinic, but if not the cff foundation has some. I have a good one provided by Solvay Pharmaceuticals Inc called Growing older with CF, and handbook for adults. Even though it says adults, everything in that book is explained in laymans terms so I think most teenaged kids would be able to grasp most of the things in the book. And the things they don't understand would be good starting points for discussion.
I also agree with everyone else who said, don't push it too much. Let him know you are here to talk, answer questions and periodically ask if he wants to talk and read some CF related things with you. But if he is "standoff-ish" about it, give it some time before you ask again. He's approaching his teen years and even without the CF factor, they are very difficult times nowdays, believe me I am not that far removed from that time.
Best of luck and don't ever feel bad for asking a question, even if somebody else tries to tell you it's bad (or whatever was said) you have questions that need to be answered and the bottom line is that sometimes the truth hurts but it needs to be told by someone. if you ever need to talk off this site, I can email you or have my husband email you if you want to talk to an adult CFer.
Julie (wife to Mark 24 w/CF)
I agree with introducing him to new information that is good for him to know. But I beleive telling a pre-teen statistics is so not right. I know when I found out I had CF, when I started reading life expectancy, I cried and cried. Because it doesn't say you may be one of the lucky ones to live past 32. It says in your face most CF'ers die at 32. Alot of people have alot of time to find out things. I was diagnost at 30 so I had so much scarring already on my lungs for not knowing and being on wrong meds. But when I did find out it was like a death sentence just handed down because I only maybe had 2 years or more. I am 35 and much better with my diagnosis now. But I know what it felt like when I was 30 and I can't imagine putting a teen through that as some of you have suggested. I beleive the family will know when the right time is. But there's no sence in someone counting the years down because they don't understand the gist of CF yet. I agree a book will be good or a dvd they have them on amazon.com and let him ask the questions that way you'll know how to handle and how extensive to get with
the answers. Eva
the answers. Eva
Emily65Roses
New member
That's why the family should tell him themselves. So he won't read somewhere that he IS GOING TO DIE AT 32. His family can tell him it's the average (if they like) and then say that it doesn't really mean much, because everyone is different. If he comes across the average on his own and it says nothing about possibly living longer, or that the average grows every year, it'll freak him out worse. <img src="i/expressions/rose.gif" border="0">
Emily makes a great point here. It's all about explaining that there is no set parameter for what will and won't affect someone with CF and how it will affect their health and their lives. It's not as simple as black and white. But it is essential to be there as a parent when these things are INITIALLY discussed so you can properly educate them. I also agree with the poster before emily that the family will know when the time is right. Some kids are ready for almost all of the information starting at 9, some wont' be ready till later-"to each his own" but you might as well start down that path because it's best to hear the accurate information from those that love you, and it's best to hear it RIGHT the first time you ever have to hear it. <u>almost</u>
Good luck with everything
Julie
Good luck with everything
Julie
Hey
This is a touchy subject. I am 28 with cf. I still have a lung function of 70%. I was told I wouldnt live past 12. This is where it gets hard. We adults right now are considered FIRST GENERATION cf adults. My mother in the beginning had done things to protect me. But at the same time let me be a child. She knew the possible outcome and had allowed me to do what I wanted. I had gone to the cf camp for about 9 years. LUCKILY I didnt get anything from it. I was one of very few who didnt. So I think him going to any cf camp is a bad idea. I think its more important to educate him, rather than tell him things just to protect him and allow him to make his own ideas up about it. Especially at 11 , soon he will start going through peer pressure times about partys (smokey areas) smoking, drinking, drugs. Its important to educate him on the side affects these can have on his health. I my self have been quit rebellious through my teenage years and still am around with decent lung function at 28. A good example of the different mutation responses and lifespans. Dont shield him from the disease, just educate.
This is a touchy subject. I am 28 with cf. I still have a lung function of 70%. I was told I wouldnt live past 12. This is where it gets hard. We adults right now are considered FIRST GENERATION cf adults. My mother in the beginning had done things to protect me. But at the same time let me be a child. She knew the possible outcome and had allowed me to do what I wanted. I had gone to the cf camp for about 9 years. LUCKILY I didnt get anything from it. I was one of very few who didnt. So I think him going to any cf camp is a bad idea. I think its more important to educate him, rather than tell him things just to protect him and allow him to make his own ideas up about it. Especially at 11 , soon he will start going through peer pressure times about partys (smokey areas) smoking, drinking, drugs. Its important to educate him on the side affects these can have on his health. I my self have been quit rebellious through my teenage years and still am around with decent lung function at 28. A good example of the different mutation responses and lifespans. Dont shield him from the disease, just educate.
Emily65Roses
New member
You're 28 which makes you first generation CF adults... I'm 21 (as of today heehee). Does that make me first generation CF adult also, or second? Or something else? <img src="i/expressions/rose.gif" border="0">
If the child is of average IQ, let them know the facts and begin the CF clinic visits. I met a 23 year old CF dying in the hospital. His parents never told him he had CF until he had his first major downturn (around 22 years old). From the time he finally found out he had CF until he died was just over one year. The denial of both his parents and himself was rather fantastic. His last week of life in the hospital, a nurse told his mother, "what don't you understand, he has end stage CF and is dying". She was stunned. Had he been more proactive and had more knowledge, I think he would have had more options (including TX) and perhaps been alive today.
I was told I had CF in the 1950's while I was around 7 and found out around 13 that I would die at 18, 19, 21, 25, etc. In 95 Seattle gave me "6 months to 3 years to live". Personally, I have always enjoyed making fools of most doctors and consider a life expectancy a challange.
Camps are obviously a poor idea and I doubt many are functioning in the world.
CF 54 TX cepacia
I was told I had CF in the 1950's while I was around 7 and found out around 13 that I would die at 18, 19, 21, 25, etc. In 95 Seattle gave me "6 months to 3 years to live". Personally, I have always enjoyed making fools of most doctors and consider a life expectancy a challange.
Camps are obviously a poor idea and I doubt many are functioning in the world.
CF 54 TX cepacia