Post TX and feeling disconnected from the CF community

dewgirl · Dec 13, 2009

I couldn't have said it any better than Piper. How well you've done with your transplant has given me daily patience and hope as I keep waiting. I tell my husband about each milestone you pass. It makes him laugh. He doesn't understand how someone I've never met can make such a difference in my life.

Not only will you have all the regular CF experiences to share with those who need, you also are the first in a group of 5 of us or so that are going through this transplant stage. I'm positive we'll be messaging each other and asking for others experiences as we each experience post-transplant life. (Notice the positive Oprah thinking <img src="i/expressions/face-icon-small-smile.gif" border="0">)

I read Piper's and Jess's blogs daily hoping their call has come and I look very forward to any new posts you make just because your recovery is simply amazing! Please don't feel disconnected from us. We are here for you and are certainly going to be needing you to be there for us.

On a personal note, I need reach out more and let fellow CFers, as well as personal friends and family, know that I'm thinking of them and they are making a difference in my life. Because I sit home so much, I assume too frequent posting or chatting with complete strangers will come off as...hmmm....a little crazy and lonely?? So, instead, I read in silence. You know what they say about those of us who assume.

dewgirl · Dec 13, 2009

I couldn't have said it any better than Piper. How well you've done with your transplant has given me daily patience and hope as I keep waiting. I tell my husband about each milestone you pass. It makes him laugh. He doesn't understand how someone I've never met can make such a difference in my life.

Not only will you have all the regular CF experiences to share with those who need, you also are the first in a group of 5 of us or so that are going through this transplant stage. I'm positive we'll be messaging each other and asking for others experiences as we each experience post-transplant life. (Notice the positive Oprah thinking <img src="i/expressions/face-icon-small-smile.gif" border="0">)

I read Piper's and Jess's blogs daily hoping their call has come and I look very forward to any new posts you make just because your recovery is simply amazing! Please don't feel disconnected from us. We are here for you and are certainly going to be needing you to be there for us.

On a personal note, I need reach out more and let fellow CFers, as well as personal friends and family, know that I'm thinking of them and they are making a difference in my life. Because I sit home so much, I assume too frequent posting or chatting with complete strangers will come off as...hmmm....a little crazy and lonely?? So, instead, I read in silence. You know what they say about those of us who assume.

dewgirl · Dec 13, 2009

I couldn't have said it any better than Piper. How well you've done with your transplant has given me daily patience and hope as I keep waiting. I tell my husband about each milestone you pass. It makes him laugh. He doesn't understand how someone I've never met can make such a difference in my life.

Not only will you have all the regular CF experiences to share with those who need, you also are the first in a group of 5 of us or so that are going through this transplant stage. I'm positive we'll be messaging each other and asking for others experiences as we each experience post-transplant life. (Notice the positive Oprah thinking <img src="i/expressions/face-icon-small-smile.gif" border="0">)

I read Piper's and Jess's blogs daily hoping their call has come and I look very forward to any new posts you make just because your recovery is simply amazing! Please don't feel disconnected from us. We are here for you and are certainly going to be needing you to be there for us.

On a personal note, I need reach out more and let fellow CFers, as well as personal friends and family, know that I'm thinking of them and they are making a difference in my life. Because I sit home so much, I assume too frequent posting or chatting with complete strangers will come off as...hmmm....a little crazy and lonely?? So, instead, I read in silence. You know what they say about those of us who assume.

dewgirl · Dec 13, 2009

I couldn't have said it any better than Piper. How well you've done with your transplant has given me daily patience and hope as I keep waiting. I tell my husband about each milestone you pass. It makes him laugh. He doesn't understand how someone I've never met can make such a difference in my life.

Not only will you have all the regular CF experiences to share with those who need, you also are the first in a group of 5 of us or so that are going through this transplant stage. I'm positive we'll be messaging each other and asking for others experiences as we each experience post-transplant life. (Notice the positive Oprah thinking <img src="i/expressions/face-icon-small-smile.gif" border="0">)

I read Piper's and Jess's blogs daily hoping their call has come and I look very forward to any new posts you make just because your recovery is simply amazing! Please don't feel disconnected from us. We are here for you and are certainly going to be needing you to be there for us.

On a personal note, I need reach out more and let fellow CFers, as well as personal friends and family, know that I'm thinking of them and they are making a difference in my life. Because I sit home so much, I assume too frequent posting or chatting with complete strangers will come off as...hmmm....a little crazy and lonely?? So, instead, I read in silence. You know what they say about those of us who assume.

dewgirl · Dec 13, 2009

I couldn't have said it any better than Piper. How well you've done with your transplant has given me daily patience and hope as I keep waiting. I tell my husband about each milestone you pass. It makes him laugh. He doesn't understand how someone I've never met can make such a difference in my life.
 
 Not only will you have all the regular CF experiences to share with those who need, you also are the first in a group of 5 of us or so that are going through this transplant stage. I'm positive we'll be messaging each other and asking for others experiences as we each experience post-transplant life. (Notice the positive Oprah thinking <img src="i/expressions/face-icon-small-smile.gif" border="0">)
 
 I read Piper's and Jess's blogs daily hoping their call has come and I look very forward to any new posts you make just because your recovery is simply amazing! Please don't feel disconnected from us. We are here for you and are certainly going to be needing you to be there for us.
 
 On a personal note, I need reach out more and let fellow CFers, as well as personal friends and family, know that I'm thinking of them and they are making a difference in my life. Because I sit home so much, I assume too frequent posting or chatting with complete strangers will come off as...hmmm....a little crazy and lonely?? So, instead, I read in silence. You know what they say about those of us who assume.

nu65 · Dec 13, 2009

I know your story has definetly helped me feel better about what I am go through transplant-wise. Great information about what to concentrate pre-transplant for exercise, those darn leg squats!

I'm not sure how I will feel about the forums afterword. Part of me wants to be so swept away in my new life that I won't have time to time about being on the computer. But I know this won't be the case. Post-transplanters still face challenges, and I hope to be a post-transplant CFer soon, so the community of post-ers is growing, no matter how you look it. We can only hope you'll stick around and we can all continue our journey's together! Thank you for reading my blog guys, I didn't realize how far my blog has spread!

nu65 · Dec 13, 2009

I know your story has definetly helped me feel better about what I am go through transplant-wise. Great information about what to concentrate pre-transplant for exercise, those darn leg squats!

I'm not sure how I will feel about the forums afterword. Part of me wants to be so swept away in my new life that I won't have time to time about being on the computer. But I know this won't be the case. Post-transplanters still face challenges, and I hope to be a post-transplant CFer soon, so the community of post-ers is growing, no matter how you look it. We can only hope you'll stick around and we can all continue our journey's together! Thank you for reading my blog guys, I didn't realize how far my blog has spread!

nu65 · Dec 13, 2009

I know your story has definetly helped me feel better about what I am go through transplant-wise. Great information about what to concentrate pre-transplant for exercise, those darn leg squats!

I'm not sure how I will feel about the forums afterword. Part of me wants to be so swept away in my new life that I won't have time to time about being on the computer. But I know this won't be the case. Post-transplanters still face challenges, and I hope to be a post-transplant CFer soon, so the community of post-ers is growing, no matter how you look it. We can only hope you'll stick around and we can all continue our journey's together! Thank you for reading my blog guys, I didn't realize how far my blog has spread!

nu65 · Dec 13, 2009

I know your story has definetly helped me feel better about what I am go through transplant-wise. Great information about what to concentrate pre-transplant for exercise, those darn leg squats!

I'm not sure how I will feel about the forums afterword. Part of me wants to be so swept away in my new life that I won't have time to time about being on the computer. But I know this won't be the case. Post-transplanters still face challenges, and I hope to be a post-transplant CFer soon, so the community of post-ers is growing, no matter how you look it. We can only hope you'll stick around and we can all continue our journey's together! Thank you for reading my blog guys, I didn't realize how far my blog has spread!

nu65 · Dec 13, 2009

I know your story has definetly helped me feel better about what I am go through transplant-wise. Great information about what to concentrate pre-transplant for exercise, those darn leg squats!
 
 I'm not sure how I will feel about the forums afterword. Part of me wants to be so swept away in my new life that I won't have time to time about being on the computer. But I know this won't be the case. Post-transplanters still face challenges, and I hope to be a post-transplant CFer soon, so the community of post-ers is growing, no matter how you look it. We can only hope you'll stick around and we can all continue our journey's together! Thank you for reading my blog guys, I didn't realize how far my blog has spread!

Lex · Dec 13, 2009

Thanks for the posts...I'm glad that my experience so far has helped. I especially like the comment that it's weird that someone you've never met can have such an impact. I've felt that way so many times on this board.

Piper...as bad as dry runs are, I would gladly do 50 dry runs to end up where I am now. Of course, I didn't have that perspective at the time, but trust me....the light at the end is so beautiful. I think I coughed once a few days ago. -- yep....it's that beautiful.

Lex · Dec 13, 2009

Thanks for the posts...I'm glad that my experience so far has helped. I especially like the comment that it's weird that someone you've never met can have such an impact. I've felt that way so many times on this board.

Piper...as bad as dry runs are, I would gladly do 50 dry runs to end up where I am now. Of course, I didn't have that perspective at the time, but trust me....the light at the end is so beautiful. I think I coughed once a few days ago. -- yep....it's that beautiful.

Lex · Dec 13, 2009

Thanks for the posts...I'm glad that my experience so far has helped. I especially like the comment that it's weird that someone you've never met can have such an impact. I've felt that way so many times on this board.

Piper...as bad as dry runs are, I would gladly do 50 dry runs to end up where I am now. Of course, I didn't have that perspective at the time, but trust me....the light at the end is so beautiful. I think I coughed once a few days ago. -- yep....it's that beautiful.

Lex · Dec 13, 2009

Thanks for the posts...I'm glad that my experience so far has helped. I especially like the comment that it's weird that someone you've never met can have such an impact. I've felt that way so many times on this board.

Piper...as bad as dry runs are, I would gladly do 50 dry runs to end up where I am now. Of course, I didn't have that perspective at the time, but trust me....the light at the end is so beautiful. I think I coughed once a few days ago. -- yep....it's that beautiful.

Lex · Dec 13, 2009

Thanks for the posts...I'm glad that my experience so far has helped. I especially like the comment that it's weird that someone you've never met can have such an impact. I've felt that way so many times on this board.
 
 Piper...as bad as dry runs are, I would gladly do 50 dry runs to end up where I am now. Of course, I didn't have that perspective at the time, but trust me....the light at the end is so beautiful. I think I coughed once a few days ago. -- yep....it's that beautiful.

jfnym · Dec 13, 2009

Hey Lex,
It's funny that you should bring this topic up. I think about that a lot - how appreciative we all should be that you post tx CFers still stick around to help us. As a matter of fact I sent Lindsey a PM this morning thanking her for her insight and sharing her experiences. And I even pointed out that it says a lot about a person that is post tx but still stays active in the online CF community. So please allow me to extend the thank you to you and all the other post tx CFers who are a vital source of info for the rest of us.
Let me rephrase one specific thank you to you though. I am not quite thanking you for the leg squats yet because they are killing me (hahaha) but I know that I owe you a thank you when I am post tx!!! (hahaha) And then you can give me an - I told ya so...
Please continue to keep us posted on your amazing recovery.
Again, thank you very much for sharing your experiences...
Jerry

jfnym · Dec 13, 2009

Hey Lex,
It's funny that you should bring this topic up. I think about that a lot - how appreciative we all should be that you post tx CFers still stick around to help us. As a matter of fact I sent Lindsey a PM this morning thanking her for her insight and sharing her experiences. And I even pointed out that it says a lot about a person that is post tx but still stays active in the online CF community. So please allow me to extend the thank you to you and all the other post tx CFers who are a vital source of info for the rest of us.
Let me rephrase one specific thank you to you though. I am not quite thanking you for the leg squats yet because they are killing me (hahaha) but I know that I owe you a thank you when I am post tx!!! (hahaha) And then you can give me an - I told ya so...
Please continue to keep us posted on your amazing recovery.
Again, thank you very much for sharing your experiences...
Jerry

jfnym · Dec 13, 2009

Hey Lex,
It's funny that you should bring this topic up. I think about that a lot - how appreciative we all should be that you post tx CFers still stick around to help us. As a matter of fact I sent Lindsey a PM this morning thanking her for her insight and sharing her experiences. And I even pointed out that it says a lot about a person that is post tx but still stays active in the online CF community. So please allow me to extend the thank you to you and all the other post tx CFers who are a vital source of info for the rest of us.
Let me rephrase one specific thank you to you though. I am not quite thanking you for the leg squats yet because they are killing me (hahaha) but I know that I owe you a thank you when I am post tx!!! (hahaha) And then you can give me an - I told ya so...
Please continue to keep us posted on your amazing recovery.
Again, thank you very much for sharing your experiences...
Jerry

jfnym · Dec 13, 2009

Hey Lex,
It's funny that you should bring this topic up. I think about that a lot - how appreciative we all should be that you post tx CFers still stick around to help us. As a matter of fact I sent Lindsey a PM this morning thanking her for her insight and sharing her experiences. And I even pointed out that it says a lot about a person that is post tx but still stays active in the online CF community. So please allow me to extend the thank you to you and all the other post tx CFers who are a vital source of info for the rest of us.
Let me rephrase one specific thank you to you though. I am not quite thanking you for the leg squats yet because they are killing me (hahaha) but I know that I owe you a thank you when I am post tx!!! (hahaha) And then you can give me an - I told ya so...
Please continue to keep us posted on your amazing recovery.
Again, thank you very much for sharing your experiences...
Jerry

jfnym · Dec 13, 2009

Hey Lex,
 It's funny that you should bring this topic up. I think about that a lot - how appreciative we all should be that you post tx CFers still stick around to help us. As a matter of fact I sent Lindsey a PM this morning thanking her for her insight and sharing her experiences. And I even pointed out that it says a lot about a person that is post tx but still stays active in the online CF community. So please allow me to extend the thank you to you and all the other post tx CFers who are a vital source of info for the rest of us.
 Let me rephrase one specific thank you to you though. I am not quite thanking you for the leg squats yet because they are killing me (hahaha) but I know that I owe you a thank you when I am post tx!!! (hahaha) And then you can give me an - I told ya so...
 Please continue to keep us posted on your amazing recovery.
 Again, thank you very much for sharing your experiences...
 Jerry

Post TX and feeling disconnected from the CF community

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member