I'm so scared

K

kitomd21

New member
I'm so scared of losing my little girl...I keep reading about young CF individuals dying before they are even 20 years old. Not that the average of late 30s is by any means long enough, but I just don't understand how they are dying so much younger. I'm sick as I type this...the emotions truly come in waves. One day we're strong and "know" that Ellie will do well and then the next day I'm envisioning her dying at 10 years old. Such a horrible ride of emotions. I pray for her every moment I look at her and keep telling myself that all is in God's hands. What a stupid illness. To be healthy in all respects except a stupid ion channel doesn't work properly and causes such horrible effects.

What advice do the parents of CF children have? For those of you with CF, is your life truly as "bad" as I'm leading myself to believe?
 
K

kitomd21

New member
I'm so scared of losing my little girl...I keep reading about young CF individuals dying before they are even 20 years old. Not that the average of late 30s is by any means long enough, but I just don't understand how they are dying so much younger. I'm sick as I type this...the emotions truly come in waves. One day we're strong and "know" that Ellie will do well and then the next day I'm envisioning her dying at 10 years old. Such a horrible ride of emotions. I pray for her every moment I look at her and keep telling myself that all is in God's hands. What a stupid illness. To be healthy in all respects except a stupid ion channel doesn't work properly and causes such horrible effects.

What advice do the parents of CF children have? For those of you with CF, is your life truly as "bad" as I'm leading myself to believe?
 
K

kitomd21

New member
I'm so scared of losing my little girl...I keep reading about young CF individuals dying before they are even 20 years old. Not that the average of late 30s is by any means long enough, but I just don't understand how they are dying so much younger. I'm sick as I type this...the emotions truly come in waves. One day we're strong and "know" that Ellie will do well and then the next day I'm envisioning her dying at 10 years old. Such a horrible ride of emotions. I pray for her every moment I look at her and keep telling myself that all is in God's hands. What a stupid illness. To be healthy in all respects except a stupid ion channel doesn't work properly and causes such horrible effects.

What advice do the parents of CF children have? For those of you with CF, is your life truly as "bad" as I'm leading myself to believe?
 
K

kitomd21

New member
I'm so scared of losing my little girl...I keep reading about young CF individuals dying before they are even 20 years old. Not that the average of late 30s is by any means long enough, but I just don't understand how they are dying so much younger. I'm sick as I type this...the emotions truly come in waves. One day we're strong and "know" that Ellie will do well and then the next day I'm envisioning her dying at 10 years old. Such a horrible ride of emotions. I pray for her every moment I look at her and keep telling myself that all is in God's hands. What a stupid illness. To be healthy in all respects except a stupid ion channel doesn't work properly and causes such horrible effects.

What advice do the parents of CF children have? For those of you with CF, is your life truly as "bad" as I'm leading myself to believe?
 
K

kitomd21

New member
I'm so scared of losing my little girl...I keep reading about young CF individuals dying before they are even 20 years old. Not that the average of late 30s is by any means long enough, but I just don't understand how they are dying so much younger. I'm sick as I type this...the emotions truly come in waves. One day we're strong and "know" that Ellie will do well and then the next day I'm envisioning her dying at 10 years old. Such a horrible ride of emotions. I pray for her every moment I look at her and keep telling myself that all is in God's hands. What a stupid illness. To be healthy in all respects except a stupid ion channel doesn't work properly and causes such horrible effects.
<br />
<br />What advice do the parents of CF children have? For those of you with CF, is your life truly as "bad" as I'm leading myself to believe?
 
R

Ratatosk

Administrator
Staff member
When DS was first diagnosed at just a few days old, I would have waves of fear hit me. And this went on for several months. I'd be fine, but then he'd throw up or run a little fever and I'd PANIC!

With time, I learned to enjoy him, a normal happy baby who just happened to have CF and therefore needed a few little extra things.

That's not to say that I'm totally self confident. There are some days when I'm overwhelmed with worry -- usually it's if he's a little under the weather, if his sputum cultures grow something, or one of us gets sick...
 
R

Ratatosk

Administrator
Staff member
When DS was first diagnosed at just a few days old, I would have waves of fear hit me. And this went on for several months. I'd be fine, but then he'd throw up or run a little fever and I'd PANIC!

With time, I learned to enjoy him, a normal happy baby who just happened to have CF and therefore needed a few little extra things.

That's not to say that I'm totally self confident. There are some days when I'm overwhelmed with worry -- usually it's if he's a little under the weather, if his sputum cultures grow something, or one of us gets sick...
 
R

Ratatosk

Administrator
Staff member
When DS was first diagnosed at just a few days old, I would have waves of fear hit me. And this went on for several months. I'd be fine, but then he'd throw up or run a little fever and I'd PANIC!

With time, I learned to enjoy him, a normal happy baby who just happened to have CF and therefore needed a few little extra things.

That's not to say that I'm totally self confident. There are some days when I'm overwhelmed with worry -- usually it's if he's a little under the weather, if his sputum cultures grow something, or one of us gets sick...
 
R

Ratatosk

Administrator
Staff member
When DS was first diagnosed at just a few days old, I would have waves of fear hit me. And this went on for several months. I'd be fine, but then he'd throw up or run a little fever and I'd PANIC!

With time, I learned to enjoy him, a normal happy baby who just happened to have CF and therefore needed a few little extra things.

That's not to say that I'm totally self confident. There are some days when I'm overwhelmed with worry -- usually it's if he's a little under the weather, if his sputum cultures grow something, or one of us gets sick...
 
R

Ratatosk

Administrator
Staff member
When DS was first diagnosed at just a few days old, I would have waves of fear hit me. And this went on for several months. I'd be fine, but then he'd throw up or run a little fever and I'd PANIC!
<br />
<br />With time, I learned to enjoy him, a normal happy baby who just happened to have CF and therefore needed a few little extra things.
<br />
<br />That's not to say that I'm totally self confident. There are some days when I'm overwhelmed with worry -- usually it's if he's a little under the weather, if his sputum cultures grow something, or one of us gets sick...
<br />
<br />
 
P

PeterC

New member
kitomd21:

The first thing that comes to mind is to stay focused on the present!

Projecting what may or may not happen is a waste of your time and energy and it may well create anxiety for those closest to you.

Read Eckhart Tolle's book "A New Earth, Awakening to Your Life's Purpose". Besides being a great read it will teach you how to be more present. If that book does not appeal to you find one that does. Google "staying present" I am sure you will find some good links that will help you deal with this.

You can miss a lot of what is happening right now, right in front of you if you become consumed by what may happen in the future. It only breeds fear and will tend to keep you frozen if your imagination goes too wild.

Your personal power is in the present!! What you do now is what counts most!! You can do nothing about the future but by being present you will be more able to see what is needed now and that will lay the ground work for a happier healthier life for both you and your child.

Sincerely:

Best wishes!!!

PeterC... soon to be 60 years old on September 8Th with CF diagnosed at age 8.
 
P

PeterC

New member
kitomd21:

The first thing that comes to mind is to stay focused on the present!

Projecting what may or may not happen is a waste of your time and energy and it may well create anxiety for those closest to you.

Read Eckhart Tolle's book "A New Earth, Awakening to Your Life's Purpose". Besides being a great read it will teach you how to be more present. If that book does not appeal to you find one that does. Google "staying present" I am sure you will find some good links that will help you deal with this.

You can miss a lot of what is happening right now, right in front of you if you become consumed by what may happen in the future. It only breeds fear and will tend to keep you frozen if your imagination goes too wild.

Your personal power is in the present!! What you do now is what counts most!! You can do nothing about the future but by being present you will be more able to see what is needed now and that will lay the ground work for a happier healthier life for both you and your child.

Sincerely:

Best wishes!!!

PeterC... soon to be 60 years old on September 8Th with CF diagnosed at age 8.
 
P

PeterC

New member
kitomd21:

The first thing that comes to mind is to stay focused on the present!

Projecting what may or may not happen is a waste of your time and energy and it may well create anxiety for those closest to you.

Read Eckhart Tolle's book "A New Earth, Awakening to Your Life's Purpose". Besides being a great read it will teach you how to be more present. If that book does not appeal to you find one that does. Google "staying present" I am sure you will find some good links that will help you deal with this.

You can miss a lot of what is happening right now, right in front of you if you become consumed by what may happen in the future. It only breeds fear and will tend to keep you frozen if your imagination goes too wild.

Your personal power is in the present!! What you do now is what counts most!! You can do nothing about the future but by being present you will be more able to see what is needed now and that will lay the ground work for a happier healthier life for both you and your child.

Sincerely:

Best wishes!!!

PeterC... soon to be 60 years old on September 8Th with CF diagnosed at age 8.
 
P

PeterC

New member
kitomd21:

The first thing that comes to mind is to stay focused on the present!

Projecting what may or may not happen is a waste of your time and energy and it may well create anxiety for those closest to you.

Read Eckhart Tolle's book "A New Earth, Awakening to Your Life's Purpose". Besides being a great read it will teach you how to be more present. If that book does not appeal to you find one that does. Google "staying present" I am sure you will find some good links that will help you deal with this.

You can miss a lot of what is happening right now, right in front of you if you become consumed by what may happen in the future. It only breeds fear and will tend to keep you frozen if your imagination goes too wild.

Your personal power is in the present!! What you do now is what counts most!! You can do nothing about the future but by being present you will be more able to see what is needed now and that will lay the ground work for a happier healthier life for both you and your child.

Sincerely:

Best wishes!!!

PeterC... soon to be 60 years old on September 8Th with CF diagnosed at age 8.
 
P

PeterC

New member
kitomd21:
<br />
<br /> The first thing that comes to mind is to stay focused on the present!
<br />
<br /> Projecting what may or may not happen is a waste of your time and energy and it may well create anxiety for those closest to you.
<br />
<br /> Read Eckhart Tolle's book "A New Earth, Awakening to Your Life's Purpose". Besides being a great read it will teach you how to be more present. If that book does not appeal to you find one that does. Google "staying present" I am sure you will find some good links that will help you deal with this.
<br />
<br /> You can miss a lot of what is happening right now, right in front of you if you become consumed by what may happen in the future. It only breeds fear and will tend to keep you frozen if your imagination goes too wild.
<br />
<br /> Your personal power is in the present!! What you do now is what counts most!! You can do nothing about the future but by being present you will be more able to see what is needed now and that will lay the ground work for a happier healthier life for both you and your child.
<br />
<br /> Sincerely:
<br />
<br /> Best wishes!!!
<br />
<br /> PeterC... soon to be 60 years old on September 8Th with CF diagnosed at age 8.
 
M

moxie1

Guest
Hello,

I am 33 years old with cf. My FEV1 is still 71% and I live an extremely normal life. I have been married for 11 years, I have a 3 month old foster son, I cook and clean and keep up with my treatments, taking care of a baby and still fit in daily exercise. I can walk 4.2 miles an hour on the treadmill. I can keep up with my husband playing tennis and basketball. I would say this is a normal life.

When I was a baby, my mom was told that I wouldn't live until 18. I was told that I would be in and out of the hospital all my life. My first hospitalization was in my twenties. Twelve years ago, when I started culturing B.Cepacia (Strain III - the worst one), my doctors said that I might go downhill very quickly. I did not.

I guess I'm trying to tell you that it IS in God's hands and that there is alot to be hopeful about. There are alot of exciting new developments coming along and I for one am excited about the future. Yes there are alot that are dying way too young, but there are also quite a few oldies. You cannot compare someone else's disease course to your daughter's case. Even those of us with the same genetic mutations have extremely different cases.

My advice for you would be to trust in the Lord, because His will is perfect, enjoy your little girl, don't have a fearful attitude around her, stay compliant, seek alternatives, keep her active and stay positive.

Becki
 
M

moxie1

Guest
Hello,

I am 33 years old with cf. My FEV1 is still 71% and I live an extremely normal life. I have been married for 11 years, I have a 3 month old foster son, I cook and clean and keep up with my treatments, taking care of a baby and still fit in daily exercise. I can walk 4.2 miles an hour on the treadmill. I can keep up with my husband playing tennis and basketball. I would say this is a normal life.

When I was a baby, my mom was told that I wouldn't live until 18. I was told that I would be in and out of the hospital all my life. My first hospitalization was in my twenties. Twelve years ago, when I started culturing B.Cepacia (Strain III - the worst one), my doctors said that I might go downhill very quickly. I did not.

I guess I'm trying to tell you that it IS in God's hands and that there is alot to be hopeful about. There are alot of exciting new developments coming along and I for one am excited about the future. Yes there are alot that are dying way too young, but there are also quite a few oldies. You cannot compare someone else's disease course to your daughter's case. Even those of us with the same genetic mutations have extremely different cases.

My advice for you would be to trust in the Lord, because His will is perfect, enjoy your little girl, don't have a fearful attitude around her, stay compliant, seek alternatives, keep her active and stay positive.

Becki
 
M

moxie1

Guest
Hello,

I am 33 years old with cf. My FEV1 is still 71% and I live an extremely normal life. I have been married for 11 years, I have a 3 month old foster son, I cook and clean and keep up with my treatments, taking care of a baby and still fit in daily exercise. I can walk 4.2 miles an hour on the treadmill. I can keep up with my husband playing tennis and basketball. I would say this is a normal life.

When I was a baby, my mom was told that I wouldn't live until 18. I was told that I would be in and out of the hospital all my life. My first hospitalization was in my twenties. Twelve years ago, when I started culturing B.Cepacia (Strain III - the worst one), my doctors said that I might go downhill very quickly. I did not.

I guess I'm trying to tell you that it IS in God's hands and that there is alot to be hopeful about. There are alot of exciting new developments coming along and I for one am excited about the future. Yes there are alot that are dying way too young, but there are also quite a few oldies. You cannot compare someone else's disease course to your daughter's case. Even those of us with the same genetic mutations have extremely different cases.

My advice for you would be to trust in the Lord, because His will is perfect, enjoy your little girl, don't have a fearful attitude around her, stay compliant, seek alternatives, keep her active and stay positive.

Becki
 
M

moxie1

Guest
Hello,

I am 33 years old with cf. My FEV1 is still 71% and I live an extremely normal life. I have been married for 11 years, I have a 3 month old foster son, I cook and clean and keep up with my treatments, taking care of a baby and still fit in daily exercise. I can walk 4.2 miles an hour on the treadmill. I can keep up with my husband playing tennis and basketball. I would say this is a normal life.

When I was a baby, my mom was told that I wouldn't live until 18. I was told that I would be in and out of the hospital all my life. My first hospitalization was in my twenties. Twelve years ago, when I started culturing B.Cepacia (Strain III - the worst one), my doctors said that I might go downhill very quickly. I did not.

I guess I'm trying to tell you that it IS in God's hands and that there is alot to be hopeful about. There are alot of exciting new developments coming along and I for one am excited about the future. Yes there are alot that are dying way too young, but there are also quite a few oldies. You cannot compare someone else's disease course to your daughter's case. Even those of us with the same genetic mutations have extremely different cases.

My advice for you would be to trust in the Lord, because His will is perfect, enjoy your little girl, don't have a fearful attitude around her, stay compliant, seek alternatives, keep her active and stay positive.

Becki
 
M

moxie1

Guest
Hello,
<br />
<br />I am 33 years old with cf. My FEV1 is still 71% and I live an extremely normal life. I have been married for 11 years, I have a 3 month old foster son, I cook and clean and keep up with my treatments, taking care of a baby and still fit in daily exercise. I can walk 4.2 miles an hour on the treadmill. I can keep up with my husband playing tennis and basketball. I would say this is a normal life.
<br />
<br />When I was a baby, my mom was told that I wouldn't live until 18. I was told that I would be in and out of the hospital all my life. My first hospitalization was in my twenties. Twelve years ago, when I started culturing B.Cepacia (Strain III - the worst one), my doctors said that I might go downhill very quickly. I did not.
<br />
<br />I guess I'm trying to tell you that it IS in God's hands and that there is alot to be hopeful about. There are alot of exciting new developments coming along and I for one am excited about the future. Yes there are alot that are dying way too young, but there are also quite a few oldies. You cannot compare someone else's disease course to your daughter's case. Even those of us with the same genetic mutations have extremely different cases.
<br />
<br />My advice for you would be to trust in the Lord, because His will is perfect, enjoy your little girl, don't have a fearful attitude around her, stay compliant, seek alternatives, keep her active and stay positive.
<br />
<br />Becki
 
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