Opening a can o' worms

Shelbyville · Sep 27, 2011

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We take another scoop looking for worms and end up with a dirty division that would have had MEL (I miss you dearly, breath easy) finding common ground for all. We have lost sooo much on this forum over the past year and one half. The principal purpose of 99% of the posts are to help all involved however was not posted in the proper location or worded in a way that stirs controversy. Some posts are taken or worded in an adversarial context but I believe we are all here to help. There is no place for any other agenda. Maybe some brain storming will help.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
The old guard have tons of history and may know a few tricks for a longer life supporting what the sterile clinics have suggested. We all come from the clinic and say "yea like that will help". Someone here has traveled down your road let them help guide you along so that the turns are easier to navigate.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
Maybe Enneo could suggest how the topic should be placed or titled so that the post is not adversarial. How about creating a "care takers" ADULT section. That would keep the focus in the direction of the most benefit.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
I guarantee that not one of us LUCKY and I mean LUCKY (don't read any more into it than that) to be here will go to the end of time to help. I have seen so many organize and coordinate functions for the good of all. I know one in my clinic who lost two young sons and is the most caring individual on the planet.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
This disease really does suck let's not give it the opportunity to divide the truly caring people who visit and contribute to the forum. CF wins tooo many battles do not let it win the war.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
No military background here. <o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>

TestifyToLove · Sep 27, 2011

I am eternally grateful for new diagnosis and treatment options that allow for adults with CF to have new eyes look at their disease, diagnose and finally treat them. As an adult diagnosed with asthma at age 33, I understand what it is like to have pieces to a long-standing, long-suffering puzzle finally put together to help you feel BETTER.
 
There is not a competition between CF patients, even though it feels like it--especially in this thread.
 
However, there is a lot of pain. For parents with children diagnosed with CF, we live a different world than someone diagnosed as a full adult. We live wondering if our children will live to BE adults....though some of us live knowing they simply will not live to be adults.
 
As just1more said, our son was diagnosed at birth, failure to diagnose would have resulted in his death. He's never actually had a sweat chloride test. They ran the genetic test when they repaired his meconium illium. If we were talking pre-genetic testing, he still would have been diagnosed. He spent his first 3 months on TPN and had his gallbladder removed before he was discharged at 3 months, as well as having a g-tubed placed.
 
Every day of his very short 9.5 years has been overshadowed and controlled by this horrible disease. EVERY SINGLE DAY. CF is not something that could have been missed for him because it frames everything about his life. It's the reason he spent his first 72 days in the hospital. It's the reason his young birthmother was unable to bond with him, and therefore unable to parent him. It's the reason he was bounced from foster home to foster home. It's the reason California deemed him unadoptable before we came into the picture. It's the reason I cry myself to sleep most nights. The reason my seven other children are crying out because something is *wrong* right now. 
 
I am holding a death watch. My son is dying. He's dying of CF. Will his lungs kill him first or his liver? No one knows. The liver disease, just like the pancreatic disease, is a direct result of his CF, so it's the same enemy regardless. 
 
My son's teacher and I have nearly daily conversations about how we're going to manage what happens with him. We're preparing. We're preparing for 2 years. We both know he has less than a year. It's obvious on his face, in his behavior, in his breathing. He is dying.
 
Bill, I'm very grateful that you were diagnosed and that you are getting treatment that helps you. However, the reality is that my son won't see 12. He won't become a teenager and he most definitely won't become an adult. However sick or struggling you were, you are 71 years old. You have lived a long life, something most kids diagnosed with CF will never hope to live. 71 is unheard of for childhood diagnosis of this diease--unheard of. Making it over 40 is itself a miracle. 
 
The reality is that only HALF of children diagnosed with CF as children will live into adulthood. That's the reality of CF in the United States. That means HALF of our children will die before they reach 18. This statistic is better for Canada and most European countries, but even they rarely see childhood diagnosis patients living to 40. It's not a competition, it's tremendous sadness. You have something our children will never have. We don't unwish that for you. We just deeply, deeply, heartbreakingly wish that for OUR children TOO. We don't understand how you can make it to 71 and our children will struggle to see 18. We don't understand what crappy luck this life and this disease mets out that you can live and walk and exist....and our babies cannot. What you percieve as competition, or unacceptance of adult CFers is just sadness.
 
I'm watching my son DIE. I'm watching it every single day. My son, my nine year old son can no longer RUN. He cries out at night in pain no doctor can explain to me. He acts out in school and he rages. And yet, because he is also Autistic, he stubbornly WILL NOT COUGH and leaves the crap in his lungs to rob him of what precious little life he has left. 
 
When I adopted him, I really hoped and prayed he would see 18. When his Heptalogist put him on palliative care, I told myself he would still see 14. In May, I told myself surely he would see teens. 13 was not too much to ask the Lord to give this child. I don't know if he'll see another birthday anymore. I probably took him to his last Labor Day soccer tournament this fall, so that he could cheer on his big brother one more time. And, I realized that he needed a wheelchair, or a medical stroller, because the effort nearly wiped him out. I'm taking him to a big family Thanksgiving in November. He will be totally exhausted, and I'm taking him anyway. Some of his family hasn't seen him in a long time. They need the chance to see him, and he needs the chance to see them. 
 
So it hurts. It hurts to hear someone at 71 say he has the same disease as Micah. It's not because you somehow don't have the same disease as Micah. It's because I would give my own life for Micah to have a FRACTION of what you have. Just one tiny slither of what you have been given in life would be more than sufficient for me, just enough for him to become an adult--that was my only hope for him from the beginning. And, he's not going to get that. It's not YOU I'm angry at. You are no more responsible for the long life you have carved out of this disease than the lack of such for Micah. It's CF we are angry at. There's no rhyme or reason. It doesn't make SENSE that Micah won't even get to be a teenager and you get to reach 71--older than most of just1more's grandparents who didn't have CF. It doesn't make sense, and it doesn't seem fair.
It's not the fault of the adult CFers. It's just the reality that CF sucks, and some of us have to live how sucky this is far more, far sooner and far more painfull than others.

TestifyToLove · Sep 27, 2011

I am eternally grateful for new diagnosis and treatment options that allow for adults with CF to have new eyes look at their disease, diagnose and finally treat them. As an adult diagnosed with asthma at age 33, I understand what it is like to have pieces to a long-standing, long-suffering puzzle finally put together to help you feel BETTER.

There is not a competition between CF patients, even though it feels like it--especially in this thread.

However, there is a lot of pain. For parents with children diagnosed with CF, we live a different world than someone diagnosed as a full adult. We live wondering if our children will live to BE adults....though some of us live knowing they simply will not live to be adults.

As just1more said, our son was diagnosed at birth, failure to diagnose would have resulted in his death. He's never actually had a sweat chloride test. They ran the genetic test when theyrepaired his meconium illium. If we were talking pre-genetic testing, he still would have been diagnosed. He spent his first 3 months on TPN and had his gallbladder removed before he was discharged at 3 months, as well as having a g-tubed placed.

Every day of his very short 9.5 years has been overshadowed and controlled by this horrible disease. EVERY SINGLE DAY. CF is not something that could have been missed for him because it frames everything about his life. It's the reason he spent his first 72 days in the hospital. It's the reason his young birthmother was unable to bond with him, and therefore unable to parent him. It's the reason he was bounced from foster home to foster home. It's the reason California deemed him unadoptable before we came into the picture. It's the reason I cry myself to sleep most nights. The reason my seven other children are crying out because something is *wrong* right now. 

I am holding a death watch. My son is dying. He's dying of CF. Will his lungs kill him first or his liver? No one knows. The liver disease, just like the pancreatic disease, is a direct result of his CF, so it's the same enemy regardless. 

My son's teacher and I have nearly daily conversations about how we're going to manage what happens with him. We're preparing. We're preparing for 2 years. We both know he has less than a year. It's obvious on his face, in his behavior, in his breathing. He is dying.

Bill, I'm very grateful that you were diagnosed and that you are getting treatment that helps you. However, the reality is that my son won't see 12. He won't become a teenager and he most definitely won't become an adult. However sick or struggling you were, you are 71 years old. You have lived a long life, something most kids diagnosed with CF will never hope to live. 71 is unheard of for childhood diagnosis of this diease--unheard of. Making it over 40 is itself a miracle. 

The reality is that only HALF of children diagnosed with CF as children will live into adulthood. That's the reality of CF in the United States. That means HALF of our children will die before they reach 18. This statistic is better for Canada and most European countries, but even they rarely see childhood diagnosis patients living to 40. It's not a competition, it's tremendous sadness. You have something our children will never have. We don't unwish that for you. We just deeply, deeply, heartbreakingly wish that for OUR children TOO. We don't understand how you can make it to 71 and our children will struggle to see 18. We don't understand what crappy luck this life and this disease mets out that you can live and walk and exist....and our babies cannot. What you percieve as competition, or unacceptance of adult CFers is just sadness.

I'm watching my son DIE. I'm watching it every single day. My son, my nine year old son can no longer RUN. He cries out at night in pain no doctor can explain to me. He acts out in school and he rages. And yet, because he is also Autistic, he stubbornly WILL NOT COUGH and leaves the crap in his lungs to rob him of what precious little life he has left. 

When I adopted him, I really hoped and prayed he would see 18. When his Heptalogist put him on palliative care, I told myself he would still see 14. In May, I told myself surely he would see teens. 13 was not too much to ask the Lord to give this child. I don't know if he'll see another birthday anymore. I probably took him to his last Labor Day soccer tournament this fall, so that he could cheer on his big brother one more time. And, I realized that he needed a wheelchair, or a medical stroller, because the effort nearly wiped him out. I'm taking him to a big family Thanksgiving in November. He will be totally exhausted, and I'm taking him anyway. Some of his family hasn't seen him in a long time. They need the chance to see him, and he needs the chance to see them. 

So it hurts. It hurts to hear someone at 71 say he has the same disease as Micah. It's not because you somehow don't have the same disease as Micah. It's because I would give my own life for Micah to have a FRACTION of what you have. Just one tiny slither of what you have been given in life would be more than sufficient for me, just enough for him to become an adult--that was my only hope for him from the beginning. And, he's not going to get that. It's not YOU I'm angry at. You are no more responsible for the long life you have carved out of this disease than the lack of such for Micah. It's CF we are angry at. There's no rhyme or reason. It doesn't make SENSE that Micah won't even get to be a teenager and you get to reach 71--older than most of just1more's grandparents who didn't have CF. It doesn't make sense, and it doesn't seem fair.
It's not the fault of the adult CFers. It's just the reality that CF sucks, and some of us have to live how sucky this is far more, far sooner and far more painfull than others.

TestifyToLove · Sep 27, 2011

I am eternally grateful for new diagnosis and treatment options that allow for adults with CF to have new eyes look at their disease, diagnose and finally treat them. As an adult diagnosed with asthma at age 33, I understand what it is like to have pieces to a long-standing, long-suffering puzzle finally put together to help you feel BETTER.

There is not a competition between CF patients, even though it feels like it--especially in this thread.

However, there is a lot of pain. For parents with children diagnosed with CF, we live a different world than someone diagnosed as a full adult. We live wondering if our children will live to BE adults....though some of us live knowing they simply will not live to be adults.

As just1more said, our son was diagnosed at birth, failure to diagnose would have resulted in his death. He's never actually had a sweat chloride test. They ran the genetic test when theyrepaired his meconium illium. If we were talking pre-genetic testing, he still would have been diagnosed. He spent his first 3 months on TPN and had his gallbladder removed before he was discharged at 3 months, as well as having a g-tubed placed.

Every day of his very short 9.5 years has been overshadowed and controlled by this horrible disease. EVERY SINGLE DAY. CF is not something that could have been missed for him because it frames everything about his life. It's the reason he spent his first 72 days in the hospital. It's the reason his young birthmother was unable to bond with him, and therefore unable to parent him. It's the reason he was bounced from foster home to foster home. It's the reason California deemed him unadoptable before we came into the picture. It's the reason I cry myself to sleep most nights. The reason my seven other children are crying out because something is *wrong* right now. 

I am holding a death watch. My son is dying. He's dying of CF. Will his lungs kill him first or his liver? No one knows. The liver disease, just like the pancreatic disease, is a direct result of his CF, so it's the same enemy regardless. 

My son's teacher and I have nearly daily conversations about how we're going to manage what happens with him. We're preparing. We're preparing for 2 years. We both know he has less than a year. It's obvious on his face, in his behavior, in his breathing. He is dying.

Bill, I'm very grateful that you were diagnosed and that you are getting treatment that helps you. However, the reality is that my son won't see 12. He won't become a teenager and he most definitely won't become an adult. However sick or struggling you were, you are 71 years old. You have lived a long life, something most kids diagnosed with CF will never hope to live. 71 is unheard of for childhood diagnosis of this diease--unheard of. Making it over 40 is itself a miracle. 

The reality is that only HALF of children diagnosed with CF as children will live into adulthood. That's the reality of CF in the United States. That means HALF of our children will die before they reach 18. This statistic is better for Canada and most European countries, but even they rarely see childhood diagnosis patients living to 40. It's not a competition, it's tremendous sadness. You have something our children will never have. We don't unwish that for you. We just deeply, deeply, heartbreakingly wish that for OUR children TOO. We don't understand how you can make it to 71 and our children will struggle to see 18. We don't understand what crappy luck this life and this disease mets out that you can live and walk and exist....and our babies cannot. What you percieve as competition, or unacceptance of adult CFers is just sadness.

I'm watching my son DIE. I'm watching it every single day. My son, my nine year old son can no longer RUN. He cries out at night in pain no doctor can explain to me. He acts out in school and he rages. And yet, because he is also Autistic, he stubbornly WILL NOT COUGH and leaves the crap in his lungs to rob him of what precious little life he has left. 

When I adopted him, I really hoped and prayed he would see 18. When his Heptalogist put him on palliative care, I told myself he would still see 14. In May, I told myself surely he would see teens. 13 was not too much to ask the Lord to give this child. I don't know if he'll see another birthday anymore. I probably took him to his last Labor Day soccer tournament this fall, so that he could cheer on his big brother one more time. And, I realized that he needed a wheelchair, or a medical stroller, because the effort nearly wiped him out. I'm taking him to a big family Thanksgiving in November. He will be totally exhausted, and I'm taking him anyway. Some of his family hasn't seen him in a long time. They need the chance to see him, and he needs the chance to see them. 

So it hurts. It hurts to hear someone at 71 say he has the same disease as Micah. It's not because you somehow don't have the same disease as Micah. It's because I would give my own life for Micah to have a FRACTION of what you have. Just one tiny slither of what you have been given in life would be more than sufficient for me, just enough for him to become an adult--that was my only hope for him from the beginning. And, he's not going to get that. It's not YOU I'm angry at. You are no more responsible for the long life you have carved out of this disease than the lack of such for Micah. It's CF we are angry at. There's no rhyme or reason. It doesn't make SENSE that Micah won't even get to be a teenager and you get to reach 71--older than most of just1more's grandparents who didn't have CF. It doesn't make sense, and it doesn't seem fair.
 It's not the fault of the adult CFers. It's just the reality that CF sucks, and some of us have to live how sucky this is far more, far sooner and far more painfull than others.

Havoc · Sep 27, 2011

I'm failing to see the benefit of 2 different sections. What does it matter when a person is diagnosed? I was diagnosed at 6 weeks, previous to that I was a "failure to thrive." At 6 weeks I was old enough for a sweat test, which of course was positive. Now I am doing really well, better than anyone (including myself) would have expected. Should I then be sequestered to a different section of the forum because of my relatively good health?
 
 Here's the poop: We all have the same bloody disease, some of us have an easier time of it. However, I could pick up a nasty bacteria tomorrow and see a rapid decline in my health. It's really a game of Russian roulette.
 
 I feel that those diagnosed later in life are at a serious disadvantage. They obviously have a more mild presentation, but what damage was done in those years where they went undiagnosed? To me, it seems they are ultimately worse off than those of us diagnosed early.

Havoc · Sep 27, 2011

I'm failing to see the benefit of 2 different sections. What does it matter when a person is diagnosed? I was diagnosed at 6 weeks, previous to that I was a "failure to thrive." At 6 weeks I was old enough for a sweat test, which of course was positive. Now I am doing really well, better than anyone (including myself) would have expected. Should I then be sequestered to a different section of the forum because of my relatively good health?
 
 Here's the poop: We all have the same bloody disease, some of us have an easier time of it. However, I could pick up a nasty bacteria tomorrow and see a rapid decline in my health. It's really a game of Russian roulette.
 
 I feel that those diagnosed later in life are at a serious disadvantage. They obviously have a more mild presentation, but what damage was done in those years where they went undiagnosed? To me, it seems they are ultimately worse off than those of us diagnosed early.

Havoc · Sep 27, 2011

I'm failing to see the benefit of 2 different sections. What does it matter when a person is diagnosed? I was diagnosed at 6 weeks, previous to that I was a "failure to thrive." At 6 weeks I was old enough for a sweat test, which of course was positive. Now I am doing really well, better than anyone (including myself) would have expected. Should I then be sequestered to a different section of the forum because of my relatively good health?
 
 Here's the poop: We all have the same bloody disease, some of us have an easier time of it. However, I could pick up a nasty bacteria tomorrow and see a rapid decline in my health. It's really a game of Russian roulette.
 
 I feel that those diagnosed later in life are at a serious disadvantage. They obviously have a more mild presentation, but what damage was done in those years where they went undiagnosed? To me, it seems they are ultimately worse off than those of us diagnosed early.

Printer · Sep 27, 2011

Tom:

I can look you in the eye and tell you that I have Cystic Fibrosis. By any standard that you wish to use, I have CYSTIC FIBROSIS. Am I facing the same SITUATION as your son, NO. But do you want to compare your son to those who have passed in there first year of life, of course not. Let us no longer be in the compare game.

It has been said here, that I have a "Atypical Cystic Fibrosis". According to the JOURNAL OF THE ROYAL SOCIETY OF MEDICINE, Supplomont No. 43, Volumn 96 Dated 2003 I have, by definition, CYSTIC FIBROSIS and also by definition I do not have ATYPICAL CYSTIC FIBROSIS.

I have grown ps and asper. I have MAC. Because I'm allergic to Pulmozyne and Tobi I am required to depend on Sailine for mucus control. While my lung function (fev1 @ 74%) is pretty good, my pancrease is fried. I can't even eat a cookie without Creon. I have had severe liver problems. Part of my stomach has been removed.

I ask every day, why I'm here when so many good kids (like your son) are taken, and I feel really bad for all of them and for their parents.

While I'm still here, I will look you in the eye and tell you that, by any medical critera, I have CF. Are my symptoms the same as your son, of course not. Are your sons symptoms the same as everyone in his age group with CF, of course not.

At last count there are almost 1900 mutations. Given that Double Delta F508 is involved in appx 10% of dx that leaves 90% of dx to spread the remaining genes. In short CF is not just one disease, much like cancer is not one disease.

I wish that I was not dx with CF at age 47 and I wish that I wasn't BORN WITH IT. The fact is, like alot of people over 40, I have it.

Recently I spent some in patient time at Massachusetts General Hospital, during that time I was told, by a nurse, that she recently cared for a CF patient in his 90s. My reaction is GOD BLESS HIM, not dam I will never get to be 90.

Bill

Printer · Sep 27, 2011

Tom:

I can look you in the eye and tell you that I have Cystic Fibrosis. By any standard that you wish to use, I have CYSTIC FIBROSIS. Am I facing the same SITUATION as your son, NO. But do you want to compare your son to those who have passed in there first year of life, of course not. Let us no longer be in the compare game.

It has been said here, that I have a "Atypical Cystic Fibrosis". According to the JOURNAL OF THE ROYAL SOCIETY OF MEDICINE, Supplomont No. 43, Volumn 96 Dated 2003 I have, by definition, CYSTIC FIBROSIS and also by definition I do not have ATYPICAL CYSTIC FIBROSIS.

I have grown ps and asper. I have MAC. Because I'm allergic to Pulmozyne and Tobi I am required to depend on Sailine for mucus control. While my lung function (fev1 @ 74%) is pretty good, my pancrease is fried. I can't even eat a cookie without Creon. I have had severe liver problems. Part of my stomach has been removed.

I ask every day, why I'm here when so many good kids (like your son) are taken, and I feel really bad for all of them and for their parents.

While I'm still here, I will look you in the eye and tell you that, by any medical critera, I have CF. Are my symptoms the same as your son, of course not. Are your sons symptoms the same as everyone in his age group with CF, of course not.

At last count there are almost 1900 mutations. Given that Double Delta F508 is involved in appx 10% of dx that leaves 90% of dx to spread the remaining genes. In short CF is not just one disease, much like cancer is not one disease.

I wish that I was not dx with CF at age 47 and I wish that I wasn't BORN WITH IT. The fact is, like alot of people over 40, I have it.

Recently I spent some in patient time at Massachusetts General Hospital, during that time I was told, by a nurse, that she recently cared for a CF patient in his 90s. My reaction is GOD BLESS HIM, not dam I will never get to be 90.

Bill

Printer · Sep 27, 2011

Tom:
 
 I can look you in the eye and tell you that I have Cystic Fibrosis. By any standard that you wish to use, I have CYSTIC FIBROSIS. Am I facing the same SITUATION as your son, NO. But do you want to compare your son to those who have passed in there first year of life, of course not. Let us no longer be in the compare game.
 
 It has been said here, that I have a "Atypical Cystic Fibrosis". According to the JOURNAL OF THE ROYAL SOCIETY OF MEDICINE, Supplomont No. 43, Volumn 96 Dated 2003 I have, by definition, CYSTIC FIBROSIS and also by definition I do not have ATYPICAL CYSTIC FIBROSIS.
 
 I have grown ps and asper. I have MAC. Because I'm allergic to Pulmozyne and Tobi I am required to depend on Sailine for mucus control. While my lung function (fev1 @ 74%) is pretty good, my pancrease is fried. I can't even eat a cookie without Creon. I have had severe liver problems. Part of my stomach has been removed.
 
 I ask every day, why I'm here when so many good kids (like your son) are taken, and I feel really bad for all of them and for their parents.
 
 While I'm still here, I will look you in the eye and tell you that, by any medical critera, I have CF. Are my symptoms the same as your son, of course not. Are your sons symptoms the same as everyone in his age group with CF, of course not.
 
 At last count there are almost 1900 mutations. Given that Double Delta F508 is involved in appx 10% of dx that leaves 90% of dx to spread the remaining genes. In short CF is not just one disease, much like cancer is not one disease.
 
 I wish that I was not dx with CF at age 47 and I wish that I wasn't BORN WITH IT. The fact is, like alot of people over 40, I have it.
 
 Recently I spent some in patient time at Massachusetts General Hospital, during that time I was told, by a nurse, that she recently cared for a CF patient in his 90s. My reaction is GOD BLESS HIM, not dam I will never get to be 90.
 
 
 
 Bill

windex125 · Sep 27, 2011

This was a excellent thread for sure since I am a 56yr. old female who was diagnosed as a infant then undiagnosed at age 7 then re diagnosed again in my 30's My sweat tests were bordline and I was treated as Bill a sickly child with bad lungs,failure to thrive. I do remember when we went to clinic there was always another child missing. My Mom never discussed CF with me or why this group of young children was getting smaller and smaller. Then at age 7 my Mom is told you do not have to bring yr. child back here anymore her sweat test is not postive. So I go untreated for years with constant pneumonia's, severe bronchitis, repeated bouts with scarlet fever but rarely in the hospital. Never quite understanding why I was always coughing green junk and constant stomach aches. This was the 50's and there was just not enough information out there. Then I finally get to a doctor in my 20's who treats me for CF and evertyhing begins to make more sense to me. Later in my 30's I finally get to another doctor who questions my case enough to get my mutations and yes there were 2 and sends me for the nasal chloride test which proves postive. Now I am in my 50's with alot of other issues. Bill you are inspiration to me and I always enjoy yr posts. As for all the parents treating yr. children you are all doing the best you can from what you write, the care and love and probably negotations you probably have to have to get the kids to do their treaments, bless you all for that. But kids we don't want to deal with sickness, or be thought of as different. My mother had me washing floors, doing laundry and she said come on get moving it will get that junk out of yr. chest. I must admit there are times that I feel bitter as I do my meds,treatments and still get sick I have my port 10yrs this year and it is still functioing excellent. I do use o2 at night. I always push myself and try to stay postive. Pat-56/Cf and a whole lot of other stuff......

windex125 · Sep 27, 2011

This was a excellent thread for sure since I am a 56yr. old female who was diagnosed as a infant then undiagnosed at age 7 then re diagnosed again in my 30's My sweat tests were bordline and I was treated as Bill a sickly child with bad lungs,failure to thrive. I do remember when we went to clinic there was always another child missing. My Mom never discussed CF with me or why this group of young children was getting smaller and smaller. Then at age 7 my Mom is told you do not have to bring yr. child back here anymore her sweat test is not postive. So I go untreated for years with constant pneumonia's, severe bronchitis, repeated bouts with scarlet fever but rarely in the hospital. Never quite understanding why I was always coughing green junk and constant stomach aches. This was the 50's and there was just not enough information out there. Then I finally get to a doctor in my 20's who treats me for CF and evertyhing begins to make more sense to me. Later in my 30's I finally get to another doctor who questions my case enough to get my mutations and yes there were 2 and sends me for the nasal chloride test which proves postive. Now I am in my 50's with alot of other issues. Bill you are inspiration to me and I always enjoy yr posts. As for all the parents treating yr. children you are all doing the best you can from what you write, the care and love and probably negotations you probably have to have to get the kids to do their treaments, bless you all for that. But kids we don't want to deal with sickness, or be thought of as different. My mother had me washing floors, doing laundry and she said come on get moving it will get that junk out of yr. chest. I must admit there are times that I feel bitter as I do my meds,treatments and still get sick I have my port 10yrs this year and it is still functioing excellent. I do use o2 at night. I always push myself and try to stay postive. Pat-56/Cf and a whole lot of other stuff......

windex125 · Sep 27, 2011

This was a excellent thread for sure since I am a 56yr. old female who was diagnosed as a infant then undiagnosed at age 7 then re diagnosed again in my 30's My sweat tests were bordline and I was treated as Bill a sickly child with bad lungs,failure to thrive. I do remember when we went to clinic there was always another child missing. My Mom never discussed CF with me or why this group of young children was getting smaller and smaller. Then at age 7 my Mom is told you do not have to bring yr. child back here anymore her sweat test is not postive. So I go untreated for years with constant pneumonia's, severe bronchitis, repeated bouts with scarlet fever but rarely in the hospital. Never quite understanding why I was always coughing green junk and constant stomach aches. This was the 50's and there was just not enough information out there. Then I finally get to a doctor in my 20's who treats me for CF and evertyhing begins to make more sense to me. Later in my 30's I finally get to another doctor who questions my case enough to get my mutations and yes there were 2 and sends me for the nasal chloride test which proves postive. Now I am in my 50's with alot of other issues. Bill you are inspiration to me and I always enjoy yr posts. As for all the parents treating yr. children you are all doing the best you can from what you write, the care and love and probably negotations you probably have to have to get the kids to do their treaments, bless you all for that. But kids we don't want to deal with sickness, or be thought of as different. My mother had me washing floors, doing laundry and she said come on get moving it will get that junk out of yr. chest. I must admit there are times that I feel bitter as I do my meds,treatments and still get sick I have my port 10yrs this year and it is still functioing excellent. I do use o2 at night. I always push myself and try to stay postive. Pat-56/Cf and a whole lot of other stuff......

Keepercjr · Sep 27, 2011

To Tom and Tom's wife (I'm sorry I don't know what your name is). I'm very sorry for the situation your family is in with your son. As I stated in a previous post my brother died 2 months after he turned 13. I see my own mom's pain in your words. My heart goes out to you.

Keepercjr · Sep 27, 2011

To Tom and Tom's wife (I'm sorry I don't know what your name is). I'm very sorry for the situation your family is in with your son. As I stated in a previous post my brother died 2 months after he turned 13. I see my own mom's pain in your words. My heart goes out to you.

Keepercjr · Sep 27, 2011

To Tom and Tom's wife (I'm sorry I don't know what your name is). I'm very sorry for the situation your family is in with your son. As I stated in a previous post my brother died 2 months after he turned 13. I see my own mom's pain in your words. My heart goes out to you.

CJPsMom · Sep 27, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: windex125 I must admit there are times that I feel bitter as I do my meds,treatments and still get sick ...</end quote></div> This statement is why this thread is meaningful to me as a CF mom. We're doing everything that we can to keep him healthy, with all the advanced treatments that the over 40 group didn't have and here we are, at 10 months old, facing a fourth hospitalization. It's hard not to be bitter and all I want is a better understanding. I want to understand - is there something common to all of you who were diagnosed late (beyond the late diagnosis)? Is there something in your genetic makeup that, despite repeated illnesses, hasn't put you in end-stage CF? Is there something environmental? Is it simply the will to live? And the other side, I hear all of the rosy stories, but what about the not rosy stories? How many kids don't make it to 10? 15? 20? As we're struggling with 9 medications & 3 daily nebs for an hour a day at 10 months...is his case more severe? Does he have something in common with those who didn't make it to adulthood? That's the only benefit I can see to looking at these cases as separate categories - what can we learn from both groups? Is there something else going on that we haven't yet identified? I guess I see this from a purely scientific perspective and the benefits that could come. It's definitely not meant in any way as disrespectful. The "over 40s" give me hope and I feel for your parents as I can't imagine dealing with those type of childhood illnesses and not having an answer for what was wrong. At least I can put a name to what is causing havoc with my son's body. I also think that the title invited controversy and may have shaped people's filter before they ever read the post.

CJPsMom · Sep 27, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: windex125 I must admit there are times that I feel bitter as I do my meds,treatments and still get sick ...</end quote> This statement is why this thread is meaningful to me as a CF mom. We're doing everything that we can to keep him healthy, with all the advanced treatments that the over 40 group didn't have and here we are, at 10 months old, facing a fourth hospitalization. It's hard not to be bitter and all I want is a better understanding. I want to understand - is there something common to all of you who were diagnosed late (beyond the late diagnosis)? Is there something in your genetic makeup that, despite repeated illnesses, hasn't put you in end-stage CF? Is there something environmental? Is it simply the will to live? And the other side, I hear all of the rosy stories, but what about the not rosy stories? How many kids don't make it to 10? 15? 20? As we're struggling with 9 medications & 3 daily nebs for an hour a day at 10 months...is his case more severe? Does he have something in common with those who didn't make it to adulthood? That's the only benefit I can see to looking at these cases as separate categories - what can we learn from both groups? Is there something else going on that we haven't yet identified? I guess I see this from a purely scientific perspective and the benefits that could come. It's definitely not meant in any way as disrespectful. The "over 40s" give me hope and I feel for your parents as I can't imagine dealing with those type of childhood illnesses and not having an answer for what was wrong. At least I can put a name to what is causing havoc with my son's body. I also think that the title invited controversy and may have shaped people's filter before they ever read the post.

CJPsMom · Sep 27, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: windex125 I must admit there are times that I feel bitter as I do my meds,treatments and still get sick ...</end quote> This statement is why this thread is meaningful to me as a CF mom. We're doing everything that we can to keep him healthy, with all the advanced treatments that the over 40 group didn't have and here we are, at 10 months old, facing a fourth hospitalization. It's hard not to be bitter and all I want is a better understanding. I want to understand - is there something common to all of you who were diagnosed late (beyond the late diagnosis)? Is there something in your genetic makeup that, despite repeated illnesses, hasn't put you in end-stage CF? Is there something environmental? Is it simply the will to live? And the other side, I hear all of the rosy stories, but what about the not rosy stories? How many kids don't make it to 10? 15? 20? As we're struggling with 9 medications & 3 daily nebs for an hour a day at 10 months...is his case more severe? Does he have something in common with those who didn't make it to adulthood? That's the only benefit I can see to looking at these cases as separate categories - what can we learn from both groups? Is there something else going on that we haven't yet identified? I guess I see this from a purely scientific perspective and the benefits that could come. It's definitely not meant in any way as disrespectful. The "over 40s" give me hope and I feel for your parents as I can't imagine dealing with those type of childhood illnesses and not having an answer for what was wrong. At least I can put a name to what is causing havoc with my son's body. I also think that the title invited controversy and may have shaped people's filter before they ever read the post.

Printer · Sep 27, 2011

Harriett:

It is interesting that you feel "under attack" because that was the way that I felt when I read the opening posts of this thread by you and Katie. What I heard you say was my DD is very sick and those over 40 were never very sick. My DD has REAL CF and those over 40 have SOMETHING ELSE.

I was, and still am, offended by your and Katies position and yes you and Katie are under attack because I don't have SOMETHING ELSE.

Bill

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