How do you feel about all the medications that prolong your life?

[LouLou]

I've spent 18,067.5 hours in my lifetime of 29 years doing treatments to combat my cf. This is 753 days or a little over 2 years. Crazy eh?

I think it is only normal to ask, "Is it worth it?" and other questions like, "What would I have done with that time if I hadn't had to do treatments?" LOL my mom seems to think that I'm not much of a reader because of having to do cf care much of my life.

To say the least, this rigorous care routine has shaped me to be the person I am not just inside (lung wise) but also in such things as my dedication level and organization abilities.

I often wonder about the interaction of the drugs we take and how we are such a small group so there will never be tests done regarding this.

Lisa, Thank you for the prayer. I am going to print it and post it in our bathroom.

 

[LouLou]

I've spent 18,067.5 hours in my lifetime of 29 years doing treatments to combat my cf. This is 753 days or a little over 2 years. Crazy eh?

I think it is only normal to ask, "Is it worth it?" and other questions like, "What would I have done with that time if I hadn't had to do treatments?" LOL my mom seems to think that I'm not much of a reader because of having to do cf care much of my life.

To say the least, this rigorous care routine has shaped me to be the person I am not just inside (lung wise) but also in such things as my dedication level and organization abilities.

I often wonder about the interaction of the drugs we take and how we are such a small group so there will never be tests done regarding this.

Lisa, Thank you for the prayer. I am going to print it and post it in our bathroom.

 

[LouLou]

I've spent 18,067.5 hours in my lifetime of 29 years doing treatments to combat my cf. This is 753 days or a little over 2 years. Crazy eh?

I think it is only normal to ask, "Is it worth it?" and other questions like, "What would I have done with that time if I hadn't had to do treatments?" LOL my mom seems to think that I'm not much of a reader because of having to do cf care much of my life.

To say the least, this rigorous care routine has shaped me to be the person I am not just inside (lung wise) but also in such things as my dedication level and organization abilities.

I often wonder about the interaction of the drugs we take and how we are such a small group so there will never be tests done regarding this.

Lisa, Thank you for the prayer. I am going to print it and post it in our bathroom.

 

[LouLou]

I've spent 18,067.5 hours in my lifetime of 29 years doing treatments to combat my cf. This is 753 days or a little over 2 years. Crazy eh?

I think it is only normal to ask, "Is it worth it?" and other questions like, "What would I have done with that time if I hadn't had to do treatments?" LOL my mom seems to think that I'm not much of a reader because of having to do cf care much of my life.

To say the least, this rigorous care routine has shaped me to be the person I am not just inside (lung wise) but also in such things as my dedication level and organization abilities.

I often wonder about the interaction of the drugs we take and how we are such a small group so there will never be tests done regarding this.

Lisa, Thank you for the prayer. I am going to print it and post it in our bathroom.

 

[LouLou]

I've spent 18,067.5 hours in my lifetime of 29 years doing treatments to combat my cf. This is 753 days or a little over 2 years. Crazy eh?

I think it is only normal to ask, "Is it worth it?" and other questions like, "What would I have done with that time if I hadn't had to do treatments?" LOL my mom seems to think that I'm not much of a reader because of having to do cf care much of my life.

To say the least, this rigorous care routine has shaped me to be the person I am not just inside (lung wise) but also in such things as my dedication level and organization abilities.

I often wonder about the interaction of the drugs we take and how we are such a small group so there will never be tests done regarding this.

Lisa, Thank you for the prayer. I am going to print it and post it in our bathroom.

 

[fondreflections]

Thank you, everyone, for your words of encouragement!

I found it interesting that most of you that responded were older CF'ers or spoke on behalf of an older CF'er. It meant a lot to me to hear those words since I'm getting up there too (less than 2 weeks to 26)!!! LOL! I really don't know anyone else with CF other than my younger sister. This site gives me the opportunity to talk with older CF people for points of view. Thank you so much!

LisaV - I am sorry for your loss. I really appreciated you sharing Rip's points of view and thought. I find myself to be similar with his initial treatment regimen; however, I'm not one to be a guinea pig. I can only begin to understand the level of disappointment that he felt in the end which led him to only do the medications that actually brought him daily relief. Thank you for sharing a significant part of your life with me. <img src="i/expressions/heart.gif" border="0">

Everyone's words were very empowering, and I hope that I wasn't the only one who appreciated them. I will admit that the passing of Lisa really fueled my fire. If I'm correct, she didn't want a transplant. Then, she changed her mind last minute only to pass on in the end. It is so sad. To be honest, it disgusted me. Then, I fell on Melissa's blog.

Well, thank you again for your words, everyone!

 

[fondreflections]

Thank you, everyone, for your words of encouragement!

I found it interesting that most of you that responded were older CF'ers or spoke on behalf of an older CF'er. It meant a lot to me to hear those words since I'm getting up there too (less than 2 weeks to 26)!!! LOL! I really don't know anyone else with CF other than my younger sister. This site gives me the opportunity to talk with older CF people for points of view. Thank you so much!

LisaV - I am sorry for your loss. I really appreciated you sharing Rip's points of view and thought. I find myself to be similar with his initial treatment regimen; however, I'm not one to be a guinea pig. I can only begin to understand the level of disappointment that he felt in the end which led him to only do the medications that actually brought him daily relief. Thank you for sharing a significant part of your life with me. <img src="i/expressions/heart.gif" border="0">

Everyone's words were very empowering, and I hope that I wasn't the only one who appreciated them. I will admit that the passing of Lisa really fueled my fire. If I'm correct, she didn't want a transplant. Then, she changed her mind last minute only to pass on in the end. It is so sad. To be honest, it disgusted me. Then, I fell on Melissa's blog.

Well, thank you again for your words, everyone!

 

[fondreflections]

Thank you, everyone, for your words of encouragement!

I found it interesting that most of you that responded were older CF'ers or spoke on behalf of an older CF'er. It meant a lot to me to hear those words since I'm getting up there too (less than 2 weeks to 26)!!! LOL! I really don't know anyone else with CF other than my younger sister. This site gives me the opportunity to talk with older CF people for points of view. Thank you so much!

LisaV - I am sorry for your loss. I really appreciated you sharing Rip's points of view and thought. I find myself to be similar with his initial treatment regimen; however, I'm not one to be a guinea pig. I can only begin to understand the level of disappointment that he felt in the end which led him to only do the medications that actually brought him daily relief. Thank you for sharing a significant part of your life with me. <img src="i/expressions/heart.gif" border="0">

Everyone's words were very empowering, and I hope that I wasn't the only one who appreciated them. I will admit that the passing of Lisa really fueled my fire. If I'm correct, she didn't want a transplant. Then, she changed her mind last minute only to pass on in the end. It is so sad. To be honest, it disgusted me. Then, I fell on Melissa's blog.

Well, thank you again for your words, everyone!

 

[fondreflections]

Thank you, everyone, for your words of encouragement!

I found it interesting that most of you that responded were older CF'ers or spoke on behalf of an older CF'er. It meant a lot to me to hear those words since I'm getting up there too (less than 2 weeks to 26)!!! LOL! I really don't know anyone else with CF other than my younger sister. This site gives me the opportunity to talk with older CF people for points of view. Thank you so much!

LisaV - I am sorry for your loss. I really appreciated you sharing Rip's points of view and thought. I find myself to be similar with his initial treatment regimen; however, I'm not one to be a guinea pig. I can only begin to understand the level of disappointment that he felt in the end which led him to only do the medications that actually brought him daily relief. Thank you for sharing a significant part of your life with me. <img src="i/expressions/heart.gif" border="0">

Everyone's words were very empowering, and I hope that I wasn't the only one who appreciated them. I will admit that the passing of Lisa really fueled my fire. If I'm correct, she didn't want a transplant. Then, she changed her mind last minute only to pass on in the end. It is so sad. To be honest, it disgusted me. Then, I fell on Melissa's blog.

Well, thank you again for your words, everyone!

 

[fondreflections]

Thank you, everyone, for your words of encouragement!

I found it interesting that most of you that responded were older CF'ers or spoke on behalf of an older CF'er. It meant a lot to me to hear those words since I'm getting up there too (less than 2 weeks to 26)!!! LOL! I really don't know anyone else with CF other than my younger sister. This site gives me the opportunity to talk with older CF people for points of view. Thank you so much!

LisaV - I am sorry for your loss. I really appreciated you sharing Rip's points of view and thought. I find myself to be similar with his initial treatment regimen; however, I'm not one to be a guinea pig. I can only begin to understand the level of disappointment that he felt in the end which led him to only do the medications that actually brought him daily relief. Thank you for sharing a significant part of your life with me. <img src="i/expressions/heart.gif" border="0">

Everyone's words were very empowering, and I hope that I wasn't the only one who appreciated them. I will admit that the passing of Lisa really fueled my fire. If I'm correct, she didn't want a transplant. Then, she changed her mind last minute only to pass on in the end. It is so sad. To be honest, it disgusted me. Then, I fell on Melissa's blog.

Well, thank you again for your words, everyone!

 

[LisaV]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fondreflections</b></i>I can only begin to understand the level of disappointment that he felt in the end which led him to only do the medications that actually brought him daily relief.</end quote></div>

He loved life and so of course was disappointed (but even more frustrated) that he could no longer participate by getting out and helping others, or seeing his youngest daughter marry (she was all grown up, but hadn't even found "the" special person yet), or watching his other two kids' children (his grandchildren) grow up.

But during his 58th year (his last year, and 2 generations beyond what he was originally told would be his life expectency), he expressed much more acceptance than disappointment. He was more concerned that we would be OK after he died than he was about dying himself. Perhaps looking at the Frankl quote, he felt that the last task life set him was to die "well" -- with acceptance and dignity.

Keeping you in my heart...

 

[LisaV]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fondreflections</b></i>I can only begin to understand the level of disappointment that he felt in the end which led him to only do the medications that actually brought him daily relief.</end quote></div>

He loved life and so of course was disappointed (but even more frustrated) that he could no longer participate by getting out and helping others, or seeing his youngest daughter marry (she was all grown up, but hadn't even found "the" special person yet), or watching his other two kids' children (his grandchildren) grow up.

But during his 58th year (his last year, and 2 generations beyond what he was originally told would be his life expectency), he expressed much more acceptance than disappointment. He was more concerned that we would be OK after he died than he was about dying himself. Perhaps looking at the Frankl quote, he felt that the last task life set him was to die "well" -- with acceptance and dignity.

Keeping you in my heart...

 

[LisaV]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fondreflections</b></i>I can only begin to understand the level of disappointment that he felt in the end which led him to only do the medications that actually brought him daily relief.</end quote></div>

He loved life and so of course was disappointed (but even more frustrated) that he could no longer participate by getting out and helping others, or seeing his youngest daughter marry (she was all grown up, but hadn't even found "the" special person yet), or watching his other two kids' children (his grandchildren) grow up.

But during his 58th year (his last year, and 2 generations beyond what he was originally told would be his life expectency), he expressed much more acceptance than disappointment. He was more concerned that we would be OK after he died than he was about dying himself. Perhaps looking at the Frankl quote, he felt that the last task life set him was to die "well" -- with acceptance and dignity.

Keeping you in my heart...

 

[LisaV]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fondreflections</b></i>I can only begin to understand the level of disappointment that he felt in the end which led him to only do the medications that actually brought him daily relief.</end quote>

He loved life and so of course was disappointed (but even more frustrated) that he could no longer participate by getting out and helping others, or seeing his youngest daughter marry (she was all grown up, but hadn't even found "the" special person yet), or watching his other two kids' children (his grandchildren) grow up.

But during his 58th year (his last year, and 2 generations beyond what he was originally told would be his life expectency), he expressed much more acceptance than disappointment. He was more concerned that we would be OK after he died than he was about dying himself. Perhaps looking at the Frankl quote, he felt that the last task life set him was to die "well" -- with acceptance and dignity.

Keeping you in my heart...

 

[LisaV]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fondreflections</b></i>I can only begin to understand the level of disappointment that he felt in the end which led him to only do the medications that actually brought him daily relief.</end quote>

He loved life and so of course was disappointed (but even more frustrated) that he could no longer participate by getting out and helping others, or seeing his youngest daughter marry (she was all grown up, but hadn't even found "the" special person yet), or watching his other two kids' children (his grandchildren) grow up.

But during his 58th year (his last year, and 2 generations beyond what he was originally told would be his life expectency), he expressed much more acceptance than disappointment. He was more concerned that we would be OK after he died than he was about dying himself. Perhaps looking at the Frankl quote, he felt that the last task life set him was to die "well" -- with acceptance and dignity.

Keeping you in my heart...

 

[NoExcuses]

Here's my quick and dirty perspective:

In the 50s and 60s, most CFers didn't make it past 10 or so. That's still probably a generous #.

By no means is that the case today. People don't live normal life expectancies - hardly. However, those that die are rarely below the age of 10.

So are the medications worth it? Sure - we are living longer. But quality of life is up to everyone. I get that. Longer isn't necessarily better.

Reminds me of a quote I heard on the radio. Some overweight 50 year old was saying that his doc told him to stop eating donuts cuz it will make him live 10 years longer than he would if he didn't. The guy goes - live 10 more years? That's another 10 years I won't be able to enjoy these donuts. What's the point?

For me, the meds are worth it. My schedule has never been as insane as it is right now, but it's still worth it. But I can see and appreciate how some can feel that they're just postponing the inevitable. I get that.

I wish our friend from Lebanon (or was it Syria) would chime in on this topic. Or even someone I read on here from Greece. They often doesn't have access to CF drugs. They would give anything to have the ability to do the meds that we have in other countries.

That often keeps me going. I owe it to all those, as corny as it sounds, to take full advantage of all the treatments that I do have. I can't imagine not having a choice - living in a country where Pulmozyme or the Vest or TOBI or the eFLow simply weren't an option.

 

[NoExcuses]

Here's my quick and dirty perspective:

In the 50s and 60s, most CFers didn't make it past 10 or so. That's still probably a generous #.

By no means is that the case today. People don't live normal life expectancies - hardly. However, those that die are rarely below the age of 10.

So are the medications worth it? Sure - we are living longer. But quality of life is up to everyone. I get that. Longer isn't necessarily better.

Reminds me of a quote I heard on the radio. Some overweight 50 year old was saying that his doc told him to stop eating donuts cuz it will make him live 10 years longer than he would if he didn't. The guy goes - live 10 more years? That's another 10 years I won't be able to enjoy these donuts. What's the point?

For me, the meds are worth it. My schedule has never been as insane as it is right now, but it's still worth it. But I can see and appreciate how some can feel that they're just postponing the inevitable. I get that.

I wish our friend from Lebanon (or was it Syria) would chime in on this topic. Or even someone I read on here from Greece. They often doesn't have access to CF drugs. They would give anything to have the ability to do the meds that we have in other countries.

That often keeps me going. I owe it to all those, as corny as it sounds, to take full advantage of all the treatments that I do have. I can't imagine not having a choice - living in a country where Pulmozyme or the Vest or TOBI or the eFLow simply weren't an option.

 

[NoExcuses]

Here's my quick and dirty perspective:

In the 50s and 60s, most CFers didn't make it past 10 or so. That's still probably a generous #.

By no means is that the case today. People don't live normal life expectancies - hardly. However, those that die are rarely below the age of 10.

So are the medications worth it? Sure - we are living longer. But quality of life is up to everyone. I get that. Longer isn't necessarily better.

Reminds me of a quote I heard on the radio. Some overweight 50 year old was saying that his doc told him to stop eating donuts cuz it will make him live 10 years longer than he would if he didn't. The guy goes - live 10 more years? That's another 10 years I won't be able to enjoy these donuts. What's the point?

For me, the meds are worth it. My schedule has never been as insane as it is right now, but it's still worth it. But I can see and appreciate how some can feel that they're just postponing the inevitable. I get that.

I wish our friend from Lebanon (or was it Syria) would chime in on this topic. Or even someone I read on here from Greece. They often doesn't have access to CF drugs. They would give anything to have the ability to do the meds that we have in other countries.

That often keeps me going. I owe it to all those, as corny as it sounds, to take full advantage of all the treatments that I do have. I can't imagine not having a choice - living in a country where Pulmozyme or the Vest or TOBI or the eFLow simply weren't an option.

 

[NoExcuses]

Here's my quick and dirty perspective:

In the 50s and 60s, most CFers didn't make it past 10 or so. That's still probably a generous #.

By no means is that the case today. People don't live normal life expectancies - hardly. However, those that die are rarely below the age of 10.

So are the medications worth it? Sure - we are living longer. But quality of life is up to everyone. I get that. Longer isn't necessarily better.

Reminds me of a quote I heard on the radio. Some overweight 50 year old was saying that his doc told him to stop eating donuts cuz it will make him live 10 years longer than he would if he didn't. The guy goes - live 10 more years? That's another 10 years I won't be able to enjoy these donuts. What's the point?

For me, the meds are worth it. My schedule has never been as insane as it is right now, but it's still worth it. But I can see and appreciate how some can feel that they're just postponing the inevitable. I get that.

I wish our friend from Lebanon (or was it Syria) would chime in on this topic. Or even someone I read on here from Greece. They often doesn't have access to CF drugs. They would give anything to have the ability to do the meds that we have in other countries.

That often keeps me going. I owe it to all those, as corny as it sounds, to take full advantage of all the treatments that I do have. I can't imagine not having a choice - living in a country where Pulmozyme or the Vest or TOBI or the eFLow simply weren't an option.

 

[NoExcuses]

Here's my quick and dirty perspective:

In the 50s and 60s, most CFers didn't make it past 10 or so. That's still probably a generous #.

By no means is that the case today. People don't live normal life expectancies - hardly. However, those that die are rarely below the age of 10.

So are the medications worth it? Sure - we are living longer. But quality of life is up to everyone. I get that. Longer isn't necessarily better.

Reminds me of a quote I heard on the radio. Some overweight 50 year old was saying that his doc told him to stop eating donuts cuz it will make him live 10 years longer than he would if he didn't. The guy goes - live 10 more years? That's another 10 years I won't be able to enjoy these donuts. What's the point?

For me, the meds are worth it. My schedule has never been as insane as it is right now, but it's still worth it. But I can see and appreciate how some can feel that they're just postponing the inevitable. I get that.

I wish our friend from Lebanon (or was it Syria) would chime in on this topic. Or even someone I read on here from Greece. They often doesn't have access to CF drugs. They would give anything to have the ability to do the meds that we have in other countries.

That often keeps me going. I owe it to all those, as corny as it sounds, to take full advantage of all the treatments that I do have. I can't imagine not having a choice - living in a country where Pulmozyme or the Vest or TOBI or the eFLow simply weren't an option.