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Is this how you feel about CF?

M

MargaritaChic

New member
Recently someone posted somthing on their child's CaringBridge site. It is a statement in a book Alex....The life of a Child, by Frank Deford.


Deford has a statement in his book. He is talking about all of the medications and treatments and so on it takes to take care of people with CF.

He says, "In a sense, it isn't accurate to say that we have kept Alex alive-we merely postponed her dying".

<b>I am wondering if this is how you feel as people with CF. Do you feel like life is a constant struggle just to stay alive?
</b>
 
M

MargaritaChic

New member
Recently someone posted somthing on their child's CaringBridge site. It is a statement in a book Alex....The life of a Child, by Frank Deford.


Deford has a statement in his book. He is talking about all of the medications and treatments and so on it takes to take care of people with CF.

He says, "In a sense, it isn't accurate to say that we have kept Alex alive-we merely postponed her dying".

<b>I am wondering if this is how you feel as people with CF. Do you feel like life is a constant struggle just to stay alive?
</b>
 
M

MargaritaChic

New member
Recently someone posted somthing on their child's CaringBridge site. It is a statement in a book Alex....The life of a Child, by Frank Deford.


Deford has a statement in his book. He is talking about all of the medications and treatments and so on it takes to take care of people with CF.

He says, "In a sense, it isn't accurate to say that we have kept Alex alive-we merely postponed her dying".

<b>I am wondering if this is how you feel as people with CF. Do you feel like life is a constant struggle just to stay alive?
</b>
 
M

MargaritaChic

New member
Recently someone posted somthing on their child's CaringBridge site. It is a statement in a book Alex....The life of a Child, by Frank Deford.


Deford has a statement in his book. He is talking about all of the medications and treatments and so on it takes to take care of people with CF.

He says, "In a sense, it isn't accurate to say that we have kept Alex alive-we merely postponed her dying".

<b>I am wondering if this is how you feel as people with CF. Do you feel like life is a constant struggle just to stay alive?
</b>
 
M

MargaritaChic

New member
Recently someone posted somthing on their child's CaringBridge site. It is a statement in a book Alex....The life of a Child, by Frank Deford.
<br />
<br />
<br />Deford has a statement in his book. He is talking about all of the medications and treatments and so on it takes to take care of people with CF.
<br />
<br />He says, "In a sense, it isn't accurate to say that we have kept Alex alive-we merely postponed her dying".
<br />
<br /><b>I am wondering if this is how you feel as people with CF. Do you feel like life is a constant struggle just to stay alive?
<br /></b>
 
T

Transplantmommy

New member
I don't feel that it is a <b>constant</b> struggle....but nevertheless, it is a struggle to stay alive. If I wasn't on all of the medications that I am on, I probably would not be here today.

Since the transplants, I don't feel it's so much a struggle anymore because I don't have to do as much as I did pre-Tx. I just have to take about 35 pills a day and that's it.
 
T

Transplantmommy

New member
I don't feel that it is a <b>constant</b> struggle....but nevertheless, it is a struggle to stay alive. If I wasn't on all of the medications that I am on, I probably would not be here today.

Since the transplants, I don't feel it's so much a struggle anymore because I don't have to do as much as I did pre-Tx. I just have to take about 35 pills a day and that's it.
 
T

Transplantmommy

New member
I don't feel that it is a <b>constant</b> struggle....but nevertheless, it is a struggle to stay alive. If I wasn't on all of the medications that I am on, I probably would not be here today.

Since the transplants, I don't feel it's so much a struggle anymore because I don't have to do as much as I did pre-Tx. I just have to take about 35 pills a day and that's it.
 
T

Transplantmommy

New member
I don't feel that it is a <b>constant</b> struggle....but nevertheless, it is a struggle to stay alive. If I wasn't on all of the medications that I am on, I probably would not be here today.

Since the transplants, I don't feel it's so much a struggle anymore because I don't have to do as much as I did pre-Tx. I just have to take about 35 pills a day and that's it.
 
T

Transplantmommy

New member
I don't feel that it is a <b>constant</b> struggle....but nevertheless, it is a struggle to stay alive. If I wasn't on all of the medications that I am on, I probably would not be here today.
<br />
<br />Since the transplants, I don't feel it's so much a struggle anymore because I don't have to do as much as I did pre-Tx. I just have to take about 35 pills a day and that's it.
 
K

Kelli

New member
Ummm, tough question.

I feel that I do 'fight' to live (exercise, treatments, meds) because my life is soooo worth it and I'm so richly blessed (family, friends, God, pets, etc). I want to be around as long as I possibly can.

I don't feel like I am putting off death, I feel like I am living all the days that are ordained for me. What else am I supposed to do, I will die when God intends for me to.

I read a post yesterday about a CF'er who is not going for transplant (fine) but instead has kind of given up (not good). I will not give up. I will 'fight' till the end, just because that's how I am. Stubborn and bull headed. <img src="i/expressions/face-icon-small-smile.gif" border="0"> And if I am able to get a transplant when the time comes, I'll kick butt at that too!

Kelli
30 f CF
 
K

Kelli

New member
Ummm, tough question.

I feel that I do 'fight' to live (exercise, treatments, meds) because my life is soooo worth it and I'm so richly blessed (family, friends, God, pets, etc). I want to be around as long as I possibly can.

I don't feel like I am putting off death, I feel like I am living all the days that are ordained for me. What else am I supposed to do, I will die when God intends for me to.

I read a post yesterday about a CF'er who is not going for transplant (fine) but instead has kind of given up (not good). I will not give up. I will 'fight' till the end, just because that's how I am. Stubborn and bull headed. <img src="i/expressions/face-icon-small-smile.gif" border="0"> And if I am able to get a transplant when the time comes, I'll kick butt at that too!

Kelli
30 f CF
 
K

Kelli

New member
Ummm, tough question.

I feel that I do 'fight' to live (exercise, treatments, meds) because my life is soooo worth it and I'm so richly blessed (family, friends, God, pets, etc). I want to be around as long as I possibly can.

I don't feel like I am putting off death, I feel like I am living all the days that are ordained for me. What else am I supposed to do, I will die when God intends for me to.

I read a post yesterday about a CF'er who is not going for transplant (fine) but instead has kind of given up (not good). I will not give up. I will 'fight' till the end, just because that's how I am. Stubborn and bull headed. <img src="i/expressions/face-icon-small-smile.gif" border="0"> And if I am able to get a transplant when the time comes, I'll kick butt at that too!

Kelli
30 f CF
 
K

Kelli

New member
Ummm, tough question.

I feel that I do 'fight' to live (exercise, treatments, meds) because my life is soooo worth it and I'm so richly blessed (family, friends, God, pets, etc). I want to be around as long as I possibly can.

I don't feel like I am putting off death, I feel like I am living all the days that are ordained for me. What else am I supposed to do, I will die when God intends for me to.

I read a post yesterday about a CF'er who is not going for transplant (fine) but instead has kind of given up (not good). I will not give up. I will 'fight' till the end, just because that's how I am. Stubborn and bull headed. <img src="i/expressions/face-icon-small-smile.gif" border="0"> And if I am able to get a transplant when the time comes, I'll kick butt at that too!

Kelli
30 f CF
 
K

Kelli

New member
Ummm, tough question.
<br />
<br />I feel that I do 'fight' to live (exercise, treatments, meds) because my life is soooo worth it and I'm so richly blessed (family, friends, God, pets, etc). I want to be around as long as I possibly can.
<br />
<br />I don't feel like I am putting off death, I feel like I am living all the days that are ordained for me. What else am I supposed to do, I will die when God intends for me to.
<br />
<br /> I read a post yesterday about a CF'er who is not going for transplant (fine) but instead has kind of given up (not good). I will not give up. I will 'fight' till the end, just because that's how I am. Stubborn and bull headed. <img src="i/expressions/face-icon-small-smile.gif" border="0"> And if I am able to get a transplant when the time comes, I'll kick butt at that too!
<br />
<br />Kelli
<br />30 f CF
<br />
 
J

JazzysMom

New member
I have to be honest & say that I feel that way. Some people might be shocked at that fact. I love life, but IMHO life is more then just having the body alive.

So as CF Progresses & takes away ones spirit....piece by piece then whether it be the physical death or the emotional/spiritual death for ME its true.

This definitely is something I think for the most part will vary among CFers &/or family members!
 
J

JazzysMom

New member
I have to be honest & say that I feel that way. Some people might be shocked at that fact. I love life, but IMHO life is more then just having the body alive.

So as CF Progresses & takes away ones spirit....piece by piece then whether it be the physical death or the emotional/spiritual death for ME its true.

This definitely is something I think for the most part will vary among CFers &/or family members!
 
J

JazzysMom

New member
I have to be honest & say that I feel that way. Some people might be shocked at that fact. I love life, but IMHO life is more then just having the body alive.

So as CF Progresses & takes away ones spirit....piece by piece then whether it be the physical death or the emotional/spiritual death for ME its true.

This definitely is something I think for the most part will vary among CFers &/or family members!
 
J

JazzysMom

New member
I have to be honest & say that I feel that way. Some people might be shocked at that fact. I love life, but IMHO life is more then just having the body alive.

So as CF Progresses & takes away ones spirit....piece by piece then whether it be the physical death or the emotional/spiritual death for ME its true.

This definitely is something I think for the most part will vary among CFers &/or family members!
 
J

JazzysMom

New member
I have to be honest & say that I feel that way. Some people might be shocked at that fact. I love life, but IMHO life is more then just having the body alive.
<br />
<br />So as CF Progresses & takes away ones spirit....piece by piece then whether it be the physical death or the emotional/spiritual death for ME its true.
<br />
<br />This definitely is something I think for the most part will vary among CFers &/or family members!
 
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