I decided on transplant....

[twitch]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lex</b></i>
Believe it or not, you do get to a point when you aren't even aware of your breathing. Imagine that?!?!?</end quote></div>

Great point Lex!

That feeling for me was right after transplant. I noticed quickly that I was no longer breathing shallow and my collar bones were nearly still when breathing. For all of us who have had trouble breathing you know what I'm talking about... the upper part of your chest up to you collar bones move a great distance and you still feel like you're suffocating.

Fahrjr - welcome to the "other side" <img src="i/expressions/face-icon-small-wink.gif" border="0">
The decision making process is different for all but it's funny because most usually know it's "that time" to move forward due to experiences as your own.

If you read some of my other posts (there aren't many, I just joined) you'll see that I have said exactly what you feel. Sure you might be living physically but you're certainly not living life to its potential since you're tied down by all of the CF leashes that hold the reign on you. It's a continuous struggle just to physically be alive with nearly ZERO quality of life.

Good call on making the decision to move forward. It's not easy but you are at the point to where you're tired of being held back and I'm happy to see you're going in the right direction. What's the latest on your decision?

For me the decision came down to this. Die @ 17 or take the risk involved with a transplant. It's very hard to believe that this was nearly 15 years ago. I've done things in the past 14.5 years that I would have never imagined I could. Being "free" over the past years and living with an absolutely wonderful quality of life has far surpassed anything that I had in the first 17 years. Specifically toward the end since I couldn't do much of anything.

 

[twitch]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lex</b></i>
Believe it or not, you do get to a point when you aren't even aware of your breathing. Imagine that?!?!?</end quote></div>

Great point Lex!

That feeling for me was right after transplant. I noticed quickly that I was no longer breathing shallow and my collar bones were nearly still when breathing. For all of us who have had trouble breathing you know what I'm talking about... the upper part of your chest up to you collar bones move a great distance and you still feel like you're suffocating.

Fahrjr - welcome to the "other side" <img src="i/expressions/face-icon-small-wink.gif" border="0">
The decision making process is different for all but it's funny because most usually know it's "that time" to move forward due to experiences as your own.

If you read some of my other posts (there aren't many, I just joined) you'll see that I have said exactly what you feel. Sure you might be living physically but you're certainly not living life to its potential since you're tied down by all of the CF leashes that hold the reign on you. It's a continuous struggle just to physically be alive with nearly ZERO quality of life.

Good call on making the decision to move forward. It's not easy but you are at the point to where you're tired of being held back and I'm happy to see you're going in the right direction. What's the latest on your decision?

For me the decision came down to this. Die @ 17 or take the risk involved with a transplant. It's very hard to believe that this was nearly 15 years ago. I've done things in the past 14.5 years that I would have never imagined I could. Being "free" over the past years and living with an absolutely wonderful quality of life has far surpassed anything that I had in the first 17 years. Specifically toward the end since I couldn't do much of anything.

 

[twitch]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lex</b></i>
Believe it or not, you do get to a point when you aren't even aware of your breathing. Imagine that?!?!?</end quote></div>

Great point Lex!

That feeling for me was right after transplant. I noticed quickly that I was no longer breathing shallow and my collar bones were nearly still when breathing. For all of us who have had trouble breathing you know what I'm talking about... the upper part of your chest up to you collar bones move a great distance and you still feel like you're suffocating.

Fahrjr - welcome to the "other side" <img src="i/expressions/face-icon-small-wink.gif" border="0">
The decision making process is different for all but it's funny because most usually know it's "that time" to move forward due to experiences as your own.

If you read some of my other posts (there aren't many, I just joined) you'll see that I have said exactly what you feel. Sure you might be living physically but you're certainly not living life to its potential since you're tied down by all of the CF leashes that hold the reign on you. It's a continuous struggle just to physically be alive with nearly ZERO quality of life.

Good call on making the decision to move forward. It's not easy but you are at the point to where you're tired of being held back and I'm happy to see you're going in the right direction. What's the latest on your decision?

For me the decision came down to this. Die @ 17 or take the risk involved with a transplant. It's very hard to believe that this was nearly 15 years ago. I've done things in the past 14.5 years that I would have never imagined I could. Being "free" over the past years and living with an absolutely wonderful quality of life has far surpassed anything that I had in the first 17 years. Specifically toward the end since I couldn't do much of anything.

 

[twitch]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lex</b></i>
Believe it or not, you do get to a point when you aren't even aware of your breathing. Imagine that?!?!?</end quote>

Great point Lex!

That feeling for me was right after transplant. I noticed quickly that I was no longer breathing shallow and my collar bones were nearly still when breathing. For all of us who have had trouble breathing you know what I'm talking about... the upper part of your chest up to you collar bones move a great distance and you still feel like you're suffocating.

Fahrjr - welcome to the "other side" <img src="i/expressions/face-icon-small-wink.gif" border="0">
The decision making process is different for all but it's funny because most usually know it's "that time" to move forward due to experiences as your own.

If you read some of my other posts (there aren't many, I just joined) you'll see that I have said exactly what you feel. Sure you might be living physically but you're certainly not living life to its potential since you're tied down by all of the CF leashes that hold the reign on you. It's a continuous struggle just to physically be alive with nearly ZERO quality of life.

Good call on making the decision to move forward. It's not easy but you are at the point to where you're tired of being held back and I'm happy to see you're going in the right direction. What's the latest on your decision?

For me the decision came down to this. Die @ 17 or take the risk involved with a transplant. It's very hard to believe that this was nearly 15 years ago. I've done things in the past 14.5 years that I would have never imagined I could. Being "free" over the past years and living with an absolutely wonderful quality of life has far surpassed anything that I had in the first 17 years. Specifically toward the end since I couldn't do much of anything.

 

[twitch]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lex</b></i>
<br />Believe it or not, you do get to a point when you aren't even aware of your breathing. Imagine that?!?!?</end quote>
<br />
<br />Great point Lex!
<br />
<br />That feeling for me was right after transplant. I noticed quickly that I was no longer breathing shallow and my collar bones were nearly still when breathing. For all of us who have had trouble breathing you know what I'm talking about... the upper part of your chest up to you collar bones move a great distance and you still feel like you're suffocating.
<br />
<br />Fahrjr - welcome to the "other side" <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />The decision making process is different for all but it's funny because most usually know it's "that time" to move forward due to experiences as your own.
<br />
<br />If you read some of my other posts (there aren't many, I just joined) you'll see that I have said exactly what you feel. Sure you might be living physically but you're certainly not living life to its potential since you're tied down by all of the CF leashes that hold the reign on you. It's a continuous struggle just to physically be alive with nearly ZERO quality of life.
<br />
<br />Good call on making the decision to move forward. It's not easy but you are at the point to where you're tired of being held back and I'm happy to see you're going in the right direction. What's the latest on your decision?
<br />
<br />For me the decision came down to this. Die @ 17 or take the risk involved with a transplant. It's very hard to believe that this was nearly 15 years ago. I've done things in the past 14.5 years that I would have never imagined I could. Being "free" over the past years and living with an absolutely wonderful quality of life has far surpassed anything that I had in the first 17 years. Specifically toward the end since I couldn't do much of anything.

 

[tarheel]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lex</b></i>

Funny thing is that when you get to that point of saying, "this is no way to live", unless you've been there, no one else really knows what that's like.



Piper....I'm reading what you're saying about just doing the necessities and yearning to do things for fun....hang in there! I'm proof that the good times are ahead. Believe it or not, you do get to a point when you aren't even aware of your breathing. Imagine that?!?!?</end quote></div>

Damn. I read this and thought "when was the last time I did something just for FUN?" I don't know. All my energy has been concentrated on treatments doctors and breathing.

 

[tarheel]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lex</b></i>

Funny thing is that when you get to that point of saying, "this is no way to live", unless you've been there, no one else really knows what that's like.



Piper....I'm reading what you're saying about just doing the necessities and yearning to do things for fun....hang in there! I'm proof that the good times are ahead. Believe it or not, you do get to a point when you aren't even aware of your breathing. Imagine that?!?!?</end quote></div>

Damn. I read this and thought "when was the last time I did something just for FUN?" I don't know. All my energy has been concentrated on treatments doctors and breathing.

 

[tarheel]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lex</b></i>

Funny thing is that when you get to that point of saying, "this is no way to live", unless you've been there, no one else really knows what that's like.



Piper....I'm reading what you're saying about just doing the necessities and yearning to do things for fun....hang in there! I'm proof that the good times are ahead. Believe it or not, you do get to a point when you aren't even aware of your breathing. Imagine that?!?!?</end quote></div>

Damn. I read this and thought "when was the last time I did something just for FUN?" I don't know. All my energy has been concentrated on treatments doctors and breathing.

 

[tarheel]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lex</b></i>

Funny thing is that when you get to that point of saying, "this is no way to live", unless you've been there, no one else really knows what that's like.



Piper....I'm reading what you're saying about just doing the necessities and yearning to do things for fun....hang in there! I'm proof that the good times are ahead. Believe it or not, you do get to a point when you aren't even aware of your breathing. Imagine that?!?!?</end quote>

Damn. I read this and thought "when was the last time I did something just for FUN?" I don't know. All my energy has been concentrated on treatments doctors and breathing.

 

[tarheel]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lex</b></i>
<br />
<br />Funny thing is that when you get to that point of saying, "this is no way to live", unless you've been there, no one else really knows what that's like.
<br />
<br />
<br />
<br />Piper....I'm reading what you're saying about just doing the necessities and yearning to do things for fun....hang in there! I'm proof that the good times are ahead. Believe it or not, you do get to a point when you aren't even aware of your breathing. Imagine that?!?!?</end quote>
<br />
<br />Damn. I read this and thought "when was the last time I did something just for FUN?" I don't know. All my energy has been concentrated on treatments doctors and breathing.

 

[fahrjr]

Yes, trying to find joy and happiness is a stretch....I blogged about that the other day...

<a target=_blank class=ftalternatingbarlinklarge href="http://fahrjr.blogspot.com/">http://fahrjr.blogspot.com/</a>

 

[fahrjr]

Yes, trying to find joy and happiness is a stretch....I blogged about that the other day...

<a target=_blank class=ftalternatingbarlinklarge href="http://fahrjr.blogspot.com/">http://fahrjr.blogspot.com/</a>

 

[fahrjr]

Yes, trying to find joy and happiness is a stretch....I blogged about that the other day...

<a target=_blank class=ftalternatingbarlinklarge href="http://fahrjr.blogspot.com/">http://fahrjr.blogspot.com/</a>

 

[fahrjr]

Yes, trying to find joy and happiness is a stretch....I blogged about that the other day...

<a target=_blank class=ftalternatingbarlinklarge href="http://fahrjr.blogspot.com/">http://fahrjr.blogspot.com/</a>

 

[fahrjr]

Yes, trying to find joy and happiness is a stretch....I blogged about that the other day...
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://fahrjr.blogspot.com/">http://fahrjr.blogspot.com/</a>

 

[twitch]

Sweet M series James... definitely one of my favorite models! I'd prefer a hard top but that's just a personal preference. It sure does look good... imagine washing and polishing that thing while not having to focus on breathing :-o (or just being able to do it at all)

When I look at that list the one thing I would be most concerned with is the Barium... I can't stand having to drink it. The last time I had to drink it I psyched myself up for it that I was going to drink it without an issue. Well that didn't happen... one sip and I was just about dry heaving. I went to the nice receptionist behind the counter and told her "I'm sorry but I've tried (again) and I can't drink this". Then she asked a miracle question... do you like fruit punch, sorta like crystal like. My reply was... um yeah! But you know how it goes... just like Ensure tastes exactly like a milkshake. Well I don't know what kind of milkshake Dr.'s drink, there is no resemblance in taste whatsoever. That stuff is just plain 'ol NASTY! Anyway, she comes back out with one of the same Styrofoam cups and hands it to me. I can see through the lid that it looks just like punch but I was still skeptical. Palms sweaty with nerves I inserted the straw, cringed, and sipped. Low and behold... it tasted fine AND like fruit punch. It was a huge sigh of relief knowing that I will always ask for that kind in the future. She said they don't offer it initially but I will always ask for that one! I guess they enjoy watching people try to down the cup of disgust. And then I sometimes hear them say "you need two cups". Wow.

All of the tests which look scary on paper tend to be the easiest such as the heart catheter. I don't remember being awake for it but do remember just having to lie still for a while. Sure, uncomfortable for a bit but nothing you can't handle. Oh, I'm sure they'll tell you but you might want to remember to shave the insertion area yourself. I don't like the idea of someone else having to shave me if you know what I mean.

Keep us posted and good luck with everything. You're still moving forward which is a huge plus! Keep up the good work.

 

[twitch]

Sweet M series James... definitely one of my favorite models! I'd prefer a hard top but that's just a personal preference. It sure does look good... imagine washing and polishing that thing while not having to focus on breathing :-o (or just being able to do it at all)

When I look at that list the one thing I would be most concerned with is the Barium... I can't stand having to drink it. The last time I had to drink it I psyched myself up for it that I was going to drink it without an issue. Well that didn't happen... one sip and I was just about dry heaving. I went to the nice receptionist behind the counter and told her "I'm sorry but I've tried (again) and I can't drink this". Then she asked a miracle question... do you like fruit punch, sorta like crystal like. My reply was... um yeah! But you know how it goes... just like Ensure tastes exactly like a milkshake. Well I don't know what kind of milkshake Dr.'s drink, there is no resemblance in taste whatsoever. That stuff is just plain 'ol NASTY! Anyway, she comes back out with one of the same Styrofoam cups and hands it to me. I can see through the lid that it looks just like punch but I was still skeptical. Palms sweaty with nerves I inserted the straw, cringed, and sipped. Low and behold... it tasted fine AND like fruit punch. It was a huge sigh of relief knowing that I will always ask for that kind in the future. She said they don't offer it initially but I will always ask for that one! I guess they enjoy watching people try to down the cup of disgust. And then I sometimes hear them say "you need two cups". Wow.

All of the tests which look scary on paper tend to be the easiest such as the heart catheter. I don't remember being awake for it but do remember just having to lie still for a while. Sure, uncomfortable for a bit but nothing you can't handle. Oh, I'm sure they'll tell you but you might want to remember to shave the insertion area yourself. I don't like the idea of someone else having to shave me if you know what I mean.

Keep us posted and good luck with everything. You're still moving forward which is a huge plus! Keep up the good work.

 

[twitch]

Sweet M series James... definitely one of my favorite models! I'd prefer a hard top but that's just a personal preference. It sure does look good... imagine washing and polishing that thing while not having to focus on breathing :-o (or just being able to do it at all)

When I look at that list the one thing I would be most concerned with is the Barium... I can't stand having to drink it. The last time I had to drink it I psyched myself up for it that I was going to drink it without an issue. Well that didn't happen... one sip and I was just about dry heaving. I went to the nice receptionist behind the counter and told her "I'm sorry but I've tried (again) and I can't drink this". Then she asked a miracle question... do you like fruit punch, sorta like crystal like. My reply was... um yeah! But you know how it goes... just like Ensure tastes exactly like a milkshake. Well I don't know what kind of milkshake Dr.'s drink, there is no resemblance in taste whatsoever. That stuff is just plain 'ol NASTY! Anyway, she comes back out with one of the same Styrofoam cups and hands it to me. I can see through the lid that it looks just like punch but I was still skeptical. Palms sweaty with nerves I inserted the straw, cringed, and sipped. Low and behold... it tasted fine AND like fruit punch. It was a huge sigh of relief knowing that I will always ask for that kind in the future. She said they don't offer it initially but I will always ask for that one! I guess they enjoy watching people try to down the cup of disgust. And then I sometimes hear them say "you need two cups". Wow.

All of the tests which look scary on paper tend to be the easiest such as the heart catheter. I don't remember being awake for it but do remember just having to lie still for a while. Sure, uncomfortable for a bit but nothing you can't handle. Oh, I'm sure they'll tell you but you might want to remember to shave the insertion area yourself. I don't like the idea of someone else having to shave me if you know what I mean.

Keep us posted and good luck with everything. You're still moving forward which is a huge plus! Keep up the good work.

 

[twitch]

Sweet M series James... definitely one of my favorite models! I'd prefer a hard top but that's just a personal preference. It sure does look good... imagine washing and polishing that thing while not having to focus on breathing :-o (or just being able to do it at all)

When I look at that list the one thing I would be most concerned with is the Barium... I can't stand having to drink it. The last time I had to drink it I psyched myself up for it that I was going to drink it without an issue. Well that didn't happen... one sip and I was just about dry heaving. I went to the nice receptionist behind the counter and told her "I'm sorry but I've tried (again) and I can't drink this". Then she asked a miracle question... do you like fruit punch, sorta like crystal like. My reply was... um yeah! But you know how it goes... just like Ensure tastes exactly like a milkshake. Well I don't know what kind of milkshake Dr.'s drink, there is no resemblance in taste whatsoever. That stuff is just plain 'ol NASTY! Anyway, she comes back out with one of the same Styrofoam cups and hands it to me. I can see through the lid that it looks just like punch but I was still skeptical. Palms sweaty with nerves I inserted the straw, cringed, and sipped. Low and behold... it tasted fine AND like fruit punch. It was a huge sigh of relief knowing that I will always ask for that kind in the future. She said they don't offer it initially but I will always ask for that one! I guess they enjoy watching people try to down the cup of disgust. And then I sometimes hear them say "you need two cups". Wow.

All of the tests which look scary on paper tend to be the easiest such as the heart catheter. I don't remember being awake for it but do remember just having to lie still for a while. Sure, uncomfortable for a bit but nothing you can't handle. Oh, I'm sure they'll tell you but you might want to remember to shave the insertion area yourself. I don't like the idea of someone else having to shave me if you know what I mean.

Keep us posted and good luck with everything. You're still moving forward which is a huge plus! Keep up the good work.

 

[twitch]

Sweet M series James... definitely one of my favorite models! I'd prefer a hard top but that's just a personal preference. It sure does look good... imagine washing and polishing that thing while not having to focus on breathing :-o (or just being able to do it at all)
<br />
<br />When I look at that list the one thing I would be most concerned with is the Barium... I can't stand having to drink it. The last time I had to drink it I psyched myself up for it that I was going to drink it without an issue. Well that didn't happen... one sip and I was just about dry heaving. I went to the nice receptionist behind the counter and told her "I'm sorry but I've tried (again) and I can't drink this". Then she asked a miracle question... do you like fruit punch, sorta like crystal like. My reply was... um yeah! But you know how it goes... just like Ensure tastes exactly like a milkshake. Well I don't know what kind of milkshake Dr.'s drink, there is no resemblance in taste whatsoever. That stuff is just plain 'ol NASTY! Anyway, she comes back out with one of the same Styrofoam cups and hands it to me. I can see through the lid that it looks just like punch but I was still skeptical. Palms sweaty with nerves I inserted the straw, cringed, and sipped. Low and behold... it tasted fine AND like fruit punch. It was a huge sigh of relief knowing that I will always ask for that kind in the future. She said they don't offer it initially but I will always ask for that one! I guess they enjoy watching people try to down the cup of disgust. And then I sometimes hear them say "you need two cups". Wow.
<br />
<br />All of the tests which look scary on paper tend to be the easiest such as the heart catheter. I don't remember being awake for it but do remember just having to lie still for a while. Sure, uncomfortable for a bit but nothing you can't handle. Oh, I'm sure they'll tell you but you might want to remember to shave the insertion area yourself. I don't like the idea of someone else having to shave me if you know what I mean.
<br />
<br />Keep us posted and good luck with everything. You're still moving forward which is a huge plus! Keep up the good work.