Post TX and feeling disconnected from the CF community

[Lex]

Ok, this may seem like a strange topic, but I have to say that ever since the TX, I feel somewhat disconnected from the CF community.

Part of it is that the day to day issues surrounding a typical CFer don't apply to me anymore. Of course I remember very vividly what it was like and I feel like there's a lot I can offer someone with CF--especially someone faced with a TX. But my issues are now all about rejection and infection, and when I can start running outside, and not thinking about every breath I take or breathing treatments or nebulizers...and on and on.

Am I alone here? I mean I still have some small digestive issues to be concerned about, but the major CF issues are a thing of the past for me.

Anyone else feel the same way?

 

[Lex]

Ok, this may seem like a strange topic, but I have to say that ever since the TX, I feel somewhat disconnected from the CF community.

Part of it is that the day to day issues surrounding a typical CFer don't apply to me anymore. Of course I remember very vividly what it was like and I feel like there's a lot I can offer someone with CF--especially someone faced with a TX. But my issues are now all about rejection and infection, and when I can start running outside, and not thinking about every breath I take or breathing treatments or nebulizers...and on and on.

Am I alone here? I mean I still have some small digestive issues to be concerned about, but the major CF issues are a thing of the past for me.

Anyone else feel the same way?

 

[Lex]

Ok, this may seem like a strange topic, but I have to say that ever since the TX, I feel somewhat disconnected from the CF community.

Part of it is that the day to day issues surrounding a typical CFer don't apply to me anymore. Of course I remember very vividly what it was like and I feel like there's a lot I can offer someone with CF--especially someone faced with a TX. But my issues are now all about rejection and infection, and when I can start running outside, and not thinking about every breath I take or breathing treatments or nebulizers...and on and on.

Am I alone here? I mean I still have some small digestive issues to be concerned about, but the major CF issues are a thing of the past for me.

Anyone else feel the same way?

 

[Lex]

Ok, this may seem like a strange topic, but I have to say that ever since the TX, I feel somewhat disconnected from the CF community.

Part of it is that the day to day issues surrounding a typical CFer don't apply to me anymore. Of course I remember very vividly what it was like and I feel like there's a lot I can offer someone with CF--especially someone faced with a TX. But my issues are now all about rejection and infection, and when I can start running outside, and not thinking about every breath I take or breathing treatments or nebulizers...and on and on.

Am I alone here? I mean I still have some small digestive issues to be concerned about, but the major CF issues are a thing of the past for me.

Anyone else feel the same way?

 

[Lex]

Ok, this may seem like a strange topic, but I have to say that ever since the TX, I feel somewhat disconnected from the CF community.
<br />
<br />Part of it is that the day to day issues surrounding a typical CFer don't apply to me anymore. Of course I remember very vividly what it was like and I feel like there's a lot I can offer someone with CF--especially someone faced with a TX. But my issues are now all about rejection and infection, and when I can start running outside, and not thinking about every breath I take or breathing treatments or nebulizers...and on and on.
<br />
<br />Am I alone here? I mean I still have some small digestive issues to be concerned about, but the major CF issues are a thing of the past for me.
<br />
<br />Anyone else feel the same way?

 

[MaksNana]

Hi Lex,
I don't know if I can help or not. But I feel you could be a big help to the CF community . Example,,,, Sharing with us , how are you doing, what it is like now that you have had the TX, how old were you when you recieved the TX , what was your condition before the TX?????
Oh my goodness I could go on and on.... You have alot to share with the CF community.. I won't boggle you down with a million questions right now.....
I just want you to know there's alot I could learn from you..........

Talk to you soon, and I pray you are doing well,,,,,,,, Karla <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[MaksNana]

Hi Lex,
I don't know if I can help or not. But I feel you could be a big help to the CF community . Example,,,, Sharing with us , how are you doing, what it is like now that you have had the TX, how old were you when you recieved the TX , what was your condition before the TX?????
Oh my goodness I could go on and on.... You have alot to share with the CF community.. I won't boggle you down with a million questions right now.....
I just want you to know there's alot I could learn from you..........

Talk to you soon, and I pray you are doing well,,,,,,,, Karla <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[MaksNana]

Hi Lex,
I don't know if I can help or not. But I feel you could be a big help to the CF community . Example,,,, Sharing with us , how are you doing, what it is like now that you have had the TX, how old were you when you recieved the TX , what was your condition before the TX?????
Oh my goodness I could go on and on.... You have alot to share with the CF community.. I won't boggle you down with a million questions right now.....
I just want you to know there's alot I could learn from you..........

Talk to you soon, and I pray you are doing well,,,,,,,, Karla <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[MaksNana]

Hi Lex,
I don't know if I can help or not. But I feel you could be a big help to the CF community . Example,,,, Sharing with us , how are you doing, what it is like now that you have had the TX, how old were you when you recieved the TX , what was your condition before the TX?????
Oh my goodness I could go on and on.... You have alot to share with the CF community.. I won't boggle you down with a million questions right now.....
I just want you to know there's alot I could learn from you..........

Talk to you soon, and I pray you are doing well,,,,,,,, Karla <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[MaksNana]

Hi Lex,
<br />I don't know if I can help or not. But I feel you could be a big help to the CF community . Example,,,, Sharing with us , how are you doing, what it is like now that you have had the TX, how old were you when you recieved the TX , what was your condition before the TX?????
<br />Oh my goodness I could go on and on.... You have alot to share with the CF community.. I won't boggle you down with a million questions right now.....
<br />I just want you to know there's alot I could learn from you..........
<br />
<br />Talk to you soon, and I pray you are doing well,,,,,,,, Karla <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Lex]

Thank you Karla...

I do feel like I can help a lot of people with what I've been through. I think a lot of my success has been luck....but there is some percent that came from my determination to live beyond my CF lungs. Exercise, nutrition, and being proactive helped in ways I can't even calculate.

Please....don't hesitate with any questions you may have. I'm just home now recovering <img src="i/expressions/face-icon-small-smile.gif" border="0">

PS. I'm just past the 1 month mark and I can't tell you guys how great I feel. Not since I was about 12 years old have I felt this good. PS. I'm 32.

 

[Lex]

Thank you Karla...

I do feel like I can help a lot of people with what I've been through. I think a lot of my success has been luck....but there is some percent that came from my determination to live beyond my CF lungs. Exercise, nutrition, and being proactive helped in ways I can't even calculate.

Please....don't hesitate with any questions you may have. I'm just home now recovering <img src="i/expressions/face-icon-small-smile.gif" border="0">

PS. I'm just past the 1 month mark and I can't tell you guys how great I feel. Not since I was about 12 years old have I felt this good. PS. I'm 32.

 

[Lex]

Thank you Karla...

I do feel like I can help a lot of people with what I've been through. I think a lot of my success has been luck....but there is some percent that came from my determination to live beyond my CF lungs. Exercise, nutrition, and being proactive helped in ways I can't even calculate.

Please....don't hesitate with any questions you may have. I'm just home now recovering <img src="i/expressions/face-icon-small-smile.gif" border="0">

PS. I'm just past the 1 month mark and I can't tell you guys how great I feel. Not since I was about 12 years old have I felt this good. PS. I'm 32.

 

[Lex]

Thank you Karla...

I do feel like I can help a lot of people with what I've been through. I think a lot of my success has been luck....but there is some percent that came from my determination to live beyond my CF lungs. Exercise, nutrition, and being proactive helped in ways I can't even calculate.

Please....don't hesitate with any questions you may have. I'm just home now recovering <img src="i/expressions/face-icon-small-smile.gif" border="0">

PS. I'm just past the 1 month mark and I can't tell you guys how great I feel. Not since I was about 12 years old have I felt this good. PS. I'm 32.

 

[Lex]

Thank you Karla...
<br />
<br />I do feel like I can help a lot of people with what I've been through. I think a lot of my success has been luck....but there is some percent that came from my determination to live beyond my CF lungs. Exercise, nutrition, and being proactive helped in ways I can't even calculate.
<br />
<br />Please....don't hesitate with any questions you may have. I'm just home now recovering <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />PS. I'm just past the 1 month mark and I can't tell you guys how great I feel. Not since I was about 12 years old have I felt this good. PS. I'm 32.

 

[NYCLawGirl]

Hey Lex,

Not sure if this will help at all, but there are a few post-tx'ers around here who are INVALUABLE resources to the CF community. Lindsey and Patti and so many more...they all have advice and stuff to share that is so helpful, both about transplant and about other CF issues. After all, just because you don't neb TOBI or do airway clearance daily anymore doesn't mean you can't offer advice about those subjects. And I can tell you already that your tx story has really helped me -- I recently had a dry run and found myself turning on my computer to read your "second chance" thread right after I got word about the possibility of lungs (I wasn't supposed to come in right away). It just helped calm me down and remind me that there's a reason to go through all of this. So thank you, from one cystic to another!

You're still a CFer -- you're still dealing with issues that many of us will face in our lifetime. You've still "been there, done that" when it comes to most of the CF routine. You survived into your early 30s with CF lungs after most of our generation was told we couldn't expect to see 18. And now you're surviving (and thriving, from what I hear) even beyond that. In short, you have SO MUCH to offer.

Maybe make a little trip into the adults section of this forum? People ask questions there daily, and I'm sure you could answer many of them. Or just stay right here and know that you ARE helping, and you ARE part of this community.

Or at least I think so <img src="i/expressions/face-icon-small-wink.gif" border="0">

Piper

 

[NYCLawGirl]

Hey Lex,

Not sure if this will help at all, but there are a few post-tx'ers around here who are INVALUABLE resources to the CF community. Lindsey and Patti and so many more...they all have advice and stuff to share that is so helpful, both about transplant and about other CF issues. After all, just because you don't neb TOBI or do airway clearance daily anymore doesn't mean you can't offer advice about those subjects. And I can tell you already that your tx story has really helped me -- I recently had a dry run and found myself turning on my computer to read your "second chance" thread right after I got word about the possibility of lungs (I wasn't supposed to come in right away). It just helped calm me down and remind me that there's a reason to go through all of this. So thank you, from one cystic to another!

You're still a CFer -- you're still dealing with issues that many of us will face in our lifetime. You've still "been there, done that" when it comes to most of the CF routine. You survived into your early 30s with CF lungs after most of our generation was told we couldn't expect to see 18. And now you're surviving (and thriving, from what I hear) even beyond that. In short, you have SO MUCH to offer.

Maybe make a little trip into the adults section of this forum? People ask questions there daily, and I'm sure you could answer many of them. Or just stay right here and know that you ARE helping, and you ARE part of this community.

Or at least I think so <img src="i/expressions/face-icon-small-wink.gif" border="0">

Piper

 

[NYCLawGirl]

Hey Lex,

Not sure if this will help at all, but there are a few post-tx'ers around here who are INVALUABLE resources to the CF community. Lindsey and Patti and so many more...they all have advice and stuff to share that is so helpful, both about transplant and about other CF issues. After all, just because you don't neb TOBI or do airway clearance daily anymore doesn't mean you can't offer advice about those subjects. And I can tell you already that your tx story has really helped me -- I recently had a dry run and found myself turning on my computer to read your "second chance" thread right after I got word about the possibility of lungs (I wasn't supposed to come in right away). It just helped calm me down and remind me that there's a reason to go through all of this. So thank you, from one cystic to another!

You're still a CFer -- you're still dealing with issues that many of us will face in our lifetime. You've still "been there, done that" when it comes to most of the CF routine. You survived into your early 30s with CF lungs after most of our generation was told we couldn't expect to see 18. And now you're surviving (and thriving, from what I hear) even beyond that. In short, you have SO MUCH to offer.

Maybe make a little trip into the adults section of this forum? People ask questions there daily, and I'm sure you could answer many of them. Or just stay right here and know that you ARE helping, and you ARE part of this community.

Or at least I think so <img src="i/expressions/face-icon-small-wink.gif" border="0">

Piper

 

[NYCLawGirl]

Hey Lex,

Not sure if this will help at all, but there are a few post-tx'ers around here who are INVALUABLE resources to the CF community. Lindsey and Patti and so many more...they all have advice and stuff to share that is so helpful, both about transplant and about other CF issues. After all, just because you don't neb TOBI or do airway clearance daily anymore doesn't mean you can't offer advice about those subjects. And I can tell you already that your tx story has really helped me -- I recently had a dry run and found myself turning on my computer to read your "second chance" thread right after I got word about the possibility of lungs (I wasn't supposed to come in right away). It just helped calm me down and remind me that there's a reason to go through all of this. So thank you, from one cystic to another!

You're still a CFer -- you're still dealing with issues that many of us will face in our lifetime. You've still "been there, done that" when it comes to most of the CF routine. You survived into your early 30s with CF lungs after most of our generation was told we couldn't expect to see 18. And now you're surviving (and thriving, from what I hear) even beyond that. In short, you have SO MUCH to offer.

Maybe make a little trip into the adults section of this forum? People ask questions there daily, and I'm sure you could answer many of them. Or just stay right here and know that you ARE helping, and you ARE part of this community.

Or at least I think so <img src="i/expressions/face-icon-small-wink.gif" border="0">

Piper

 

[NYCLawGirl]

Hey Lex,
<br />
<br />Not sure if this will help at all, but there are a few post-tx'ers around here who are INVALUABLE resources to the CF community. Lindsey and Patti and so many more...they all have advice and stuff to share that is so helpful, both about transplant and about other CF issues. After all, just because you don't neb TOBI or do airway clearance daily anymore doesn't mean you can't offer advice about those subjects. And I can tell you already that your tx story has really helped me -- I recently had a dry run and found myself turning on my computer to read your "second chance" thread right after I got word about the possibility of lungs (I wasn't supposed to come in right away). It just helped calm me down and remind me that there's a reason to go through all of this. So thank you, from one cystic to another!
<br />
<br />You're still a CFer -- you're still dealing with issues that many of us will face in our lifetime. You've still "been there, done that" when it comes to most of the CF routine. You survived into your early 30s with CF lungs after most of our generation was told we couldn't expect to see 18. And now you're surviving (and thriving, from what I hear) even beyond that. In short, you have SO MUCH to offer.
<br />
<br />Maybe make a little trip into the adults section of this forum? People ask questions there daily, and I'm sure you could answer many of them. Or just stay right here and know that you ARE helping, and you ARE part of this community.
<br />
<br />Or at least I think so <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />Piper