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How do we CFers die?
- Thread starter mellybean17
- Start date
<br>Bill, I love reading your posts!I have DDF508 and was DX'd at 2 years. I am 32 now and have no plans of dying anytime soon. My health is good, and i work hard to keep it this way. I have an amazing family - a wonderful husband and a beautiful little boy who is adopted. You never know what the Lord has planned for you...my parents were told that I would be dead by the age of 5. Yet, here I am, grateful for my health and my life. I spent my teenage years and through my 20's in denial of CF.I was scarcastic, angry, careless,(and just a brat.) Take care of yourself and realize you may live a long and healthy life <img src="i/expressions/face-icon-small-wink.gif" border="0">. lucie
<br>Bill, I love reading your posts!I have DDF508 and was DX'd at 2 years. I am 32 now and have no plans of dying anytime soon. My health is good, and i work hard to keep it this way. I have an amazing family - a wonderful husband and a beautiful little boy who is adopted. You never know what the Lord has planned for you...my parents were told that I would be dead by the age of 5. Yet, here I am, grateful for my health and my life. I spent my teenage years and through my 20's in denial of CF.I was scarcastic, angry, careless,(and just a brat.) Take care of yourself and realize you may live a long and healthy life <img src="i/expressions/face-icon-small-wink.gif" border="0">. lucie
<br>Bill, I love reading your posts!I have DDF508 and was DX'd at 2 years. I am 32 now and have no plans of dying anytime soon. My health is good, and i work hard to keep it this way. I have an amazing family - a wonderful husband and a beautiful little boy who is adopted. You never know what the Lord has planned for you...my parents were told that I would be dead by the age of 5. Yet, here I am, grateful for my health and my life. I spent my teenage years and through my 20's in denial of CF.I was scarcastic, angry, careless,(and just a brat.) Take care of yourself and realize you may live a long and healthy life <img src="i/expressions/face-icon-small-wink.gif" border="0">. lucie
P
Plonit
Guest
Occasionally I think of this too (5 yr. old son wt CF) though it's irrelevant now and pretty morbid. It's normal for you to be curious about it but truth is we can all die at any time in any way and it's more productive to think about living. We all have to do what we can to stay healthy and safe whether our challenge is obesity, CF, diabetes or skiing. May G-d grant you a long and happy life.
P
Plonit
Guest
Occasionally I think of this too (5 yr. old son wt CF) though it's irrelevant now and pretty morbid. It's normal for you to be curious about it but truth is we can all die at any time in any way and it's more productive to think about living. We all have to do what we can to stay healthy and safe whether our challenge is obesity, CF, diabetes or skiing. May G-d grant you a long and happy life.
P
Plonit
Guest
Occasionally I think of this too (5 yr. old son wt CF) though it's irrelevant now and pretty morbid. It's normal for you to be curious about it but truth is we can all die at any time in any way and it's more productive to think about living. We all have to do what we can to stay healthy and safe whether our challenge is obesity, CF, diabetes or skiing. May G-d grant you a long and happy life.
Read "The Power of Two" it's written by the Anna and Isa Stenzel. They are amazing, they are twins and they both have CF. This book is their autobiography. (Their life story written by themselves.)
This will help give you some insight into life, suffering and even death with CF. It is healthy to wonder especially when your life is filled with daily therapy and drugs and Drs all reminding you that you need them in order to stay healthy and not die a very young age.
I've read the book and I think it is age appropriate for teens and older. See their web site for more info. http://www.thepoweroftwomovie.com/
PS I haven't seen the movie and don't know if it will answer your questions as well as the book. Good luck.
This will help give you some insight into life, suffering and even death with CF. It is healthy to wonder especially when your life is filled with daily therapy and drugs and Drs all reminding you that you need them in order to stay healthy and not die a very young age.
I've read the book and I think it is age appropriate for teens and older. See their web site for more info. http://www.thepoweroftwomovie.com/
PS I haven't seen the movie and don't know if it will answer your questions as well as the book. Good luck.
Read "The Power of Two" it's written by the Anna and Isa Stenzel. They are amazing, they are twins and they both have CF. This book is their autobiography. (Their life story written by themselves.)
This will help give you some insight into life, suffering and even death with CF. It is healthy to wonder especially when your life is filled with daily therapy and drugs and Drs all reminding you that you need them in order to stay healthy and not die a very young age.
I've read the book and I think it is age appropriate for teens and older. See their web site for more info. http://www.thepoweroftwomovie.com/
PS I haven't seen the movie and don't know if it will answer your questions as well as the book. Good luck.
This will help give you some insight into life, suffering and even death with CF. It is healthy to wonder especially when your life is filled with daily therapy and drugs and Drs all reminding you that you need them in order to stay healthy and not die a very young age.
I've read the book and I think it is age appropriate for teens and older. See their web site for more info. http://www.thepoweroftwomovie.com/
PS I haven't seen the movie and don't know if it will answer your questions as well as the book. Good luck.
Read "The Power of Two" it's written by the Anna and Isa Stenzel. They are amazing, they are twins and they both have CF. This book is their autobiography. (Their life story written by themselves.)
This will help give you some insight into life, suffering and even death with CF. It is healthy to wonder especially when your life is filled with daily therapy and drugs and Drs all reminding you that you need them in order to stay healthy and not die a very young age.
I've read the book and I think it is age appropriate for teens and older. See their web site for more info. http://www.thepoweroftwomovie.com/
PS I haven't seen the movie and don't know if it will answer your questions as well as the book. Good luck.
This will help give you some insight into life, suffering and even death with CF. It is healthy to wonder especially when your life is filled with daily therapy and drugs and Drs all reminding you that you need them in order to stay healthy and not die a very young age.
I've read the book and I think it is age appropriate for teens and older. See their web site for more info. http://www.thepoweroftwomovie.com/
PS I haven't seen the movie and don't know if it will answer your questions as well as the book. Good luck.
mea6195 and others:
I was born in January of 1940. At that time there were two names for CF, Celiac Syndrome (a disease of the pancrease) and in the late 1930's it was given the name Cystic Fibrosis. Cystic Fibrosis, at that time, was "caused by a deficiency of Vitamin A". There were NO Doctors who specialised in CF, there were no CF Clinics, there wasn't any CFF, only sickley, skinny, mal nurished kids waiting to die.
I want you to imagine that when you were dx at age 5 there was no CF Doctors, no CF Center, no Tobi, no Pulmizime, no enzymes, no vest, and no hyper sailine and especially NO LUNG TRANSPLANTS. Now think about surviving, that way, to your 47. There is penicillen but nothing else. Certainly no lung treatments.
You say "yea but you weren't dx until you were 47" like I contracted CF at 47 years of age. WRONG!! I was born with it, same as you. It is no small miracle that those of us born before 1970 survived. I, like others, didn't wait until we were adults to start to show symptoms, we had symptoms all of our lives.
If it wasn't for the people who raised money, starting in the 1960's, there would not be the results of years of research that you now benefit from now. CF didn't begin on the day that you were born.
I was born in January of 1940. At that time there were two names for CF, Celiac Syndrome (a disease of the pancrease) and in the late 1930's it was given the name Cystic Fibrosis. Cystic Fibrosis, at that time, was "caused by a deficiency of Vitamin A". There were NO Doctors who specialised in CF, there were no CF Clinics, there wasn't any CFF, only sickley, skinny, mal nurished kids waiting to die.
I want you to imagine that when you were dx at age 5 there was no CF Doctors, no CF Center, no Tobi, no Pulmizime, no enzymes, no vest, and no hyper sailine and especially NO LUNG TRANSPLANTS. Now think about surviving, that way, to your 47. There is penicillen but nothing else. Certainly no lung treatments.
You say "yea but you weren't dx until you were 47" like I contracted CF at 47 years of age. WRONG!! I was born with it, same as you. It is no small miracle that those of us born before 1970 survived. I, like others, didn't wait until we were adults to start to show symptoms, we had symptoms all of our lives.
If it wasn't for the people who raised money, starting in the 1960's, there would not be the results of years of research that you now benefit from now. CF didn't begin on the day that you were born.
mea6195 and others:
I was born in January of 1940. At that time there were two names for CF, Celiac Syndrome (a disease of the pancrease) and in the late 1930's it was given the name Cystic Fibrosis. Cystic Fibrosis, at that time, was "caused by a deficiency of Vitamin A". There were NO Doctors who specialised in CF, there were no CF Clinics, there wasn't any CFF, only sickley, skinny, mal nurished kids waiting to die.
I want you to imagine that when you were dx at age 5 there was no CF Doctors, no CF Center, no Tobi, no Pulmizime, no enzymes, no vest, and no hyper sailine and especially NO LUNG TRANSPLANTS. Now think about surviving, that way, to your 47. There is penicillen but nothing else. Certainly no lung treatments.
You say "yea but you weren't dx until you were 47" like I contracted CF at 47 years of age. WRONG!! I was born with it, same as you. It is no small miracle that those of us born before 1970 survived. I, like others, didn't wait until we were adults to start to show symptoms, we had symptoms all of our lives.
If it wasn't for the people who raised money, starting in the 1960's, there would not be the results of years of research that you now benefit from now. CF didn't begin on the day that you were born.
I was born in January of 1940. At that time there were two names for CF, Celiac Syndrome (a disease of the pancrease) and in the late 1930's it was given the name Cystic Fibrosis. Cystic Fibrosis, at that time, was "caused by a deficiency of Vitamin A". There were NO Doctors who specialised in CF, there were no CF Clinics, there wasn't any CFF, only sickley, skinny, mal nurished kids waiting to die.
I want you to imagine that when you were dx at age 5 there was no CF Doctors, no CF Center, no Tobi, no Pulmizime, no enzymes, no vest, and no hyper sailine and especially NO LUNG TRANSPLANTS. Now think about surviving, that way, to your 47. There is penicillen but nothing else. Certainly no lung treatments.
You say "yea but you weren't dx until you were 47" like I contracted CF at 47 years of age. WRONG!! I was born with it, same as you. It is no small miracle that those of us born before 1970 survived. I, like others, didn't wait until we were adults to start to show symptoms, we had symptoms all of our lives.
If it wasn't for the people who raised money, starting in the 1960's, there would not be the results of years of research that you now benefit from now. CF didn't begin on the day that you were born.
mea6195 and others:
I was born in January of 1940. At that time there were two names for CF, Celiac Syndrome (a disease of the pancrease) and in the late 1930's it was given the name Cystic Fibrosis. Cystic Fibrosis, at that time, was "caused by a deficiency of Vitamin A". There were NO Doctors who specialised in CF, there were no CF Clinics, there wasn't any CFF, only sickley, skinny, mal nurished kids waiting to die.
I want you to imagine that when you were dx at age 5 there was no CF Doctors, no CF Center, no Tobi, no Pulmizime, no enzymes, no vest, and no hyper sailine and especially NO LUNG TRANSPLANTS. Now think about surviving, that way, to your 47. There is penicillen but nothing else. Certainly no lung treatments.
You say "yea but you weren't dx until you were 47" like I contracted CF at 47 years of age. WRONG!! I was born with it, same as you. It is no small miracle that those of us born before 1970 survived. I, like others, didn't wait until we were adults to start to show symptoms, we had symptoms all of our lives.
If it wasn't for the people who raised money, starting in the 1960's, there would not be the results of years of research that you now benefit from now. CF didn't begin on the day that you were born.
I was born in January of 1940. At that time there were two names for CF, Celiac Syndrome (a disease of the pancrease) and in the late 1930's it was given the name Cystic Fibrosis. Cystic Fibrosis, at that time, was "caused by a deficiency of Vitamin A". There were NO Doctors who specialised in CF, there were no CF Clinics, there wasn't any CFF, only sickley, skinny, mal nurished kids waiting to die.
I want you to imagine that when you were dx at age 5 there was no CF Doctors, no CF Center, no Tobi, no Pulmizime, no enzymes, no vest, and no hyper sailine and especially NO LUNG TRANSPLANTS. Now think about surviving, that way, to your 47. There is penicillen but nothing else. Certainly no lung treatments.
You say "yea but you weren't dx until you were 47" like I contracted CF at 47 years of age. WRONG!! I was born with it, same as you. It is no small miracle that those of us born before 1970 survived. I, like others, didn't wait until we were adults to start to show symptoms, we had symptoms all of our lives.
If it wasn't for the people who raised money, starting in the 1960's, there would not be the results of years of research that you now benefit from now. CF didn't begin on the day that you were born.
rubiecakez642
New member
i dont no but that is a scary thought