losing friends after tx

[kaylamarie19]

i was just recently transplanted in feb of this year and im having a hard time with my non-cf friends. they were with me through the surgery and after, but now they tell me i had a non complicated surgery and i shouldnt complain about anything anymore. they think im playing a victim but when i ask them to give me an instance when this was true, they tell me they dont have to. i feel like they dont understand how much my life has changed and that because i got tx'd, im not "fixed"; although im very grateful that my life is a million times better. anyone else have similar issues?

 

[kaylamarie19]

i was just recently transplanted in feb of this year and im having a hard time with my non-cf friends. they were with me through the surgery and after, but now they tell me i had a non complicated surgery and i shouldnt complain about anything anymore. they think im playing a victim but when i ask them to give me an instance when this was true, they tell me they dont have to. i feel like they dont understand how much my life has changed and that because i got tx'd, im not "fixed"; although im very grateful that my life is a million times better. anyone else have similar issues?

 

[kaylamarie19]

i was just recently transplanted in feb of this year and im having a hard time with my non-cf friends. they were with me through the surgery and after, but now they tell me i had a non complicated surgery and i shouldnt complain about anything anymore. they think im playing a victim but when i ask them to give me an instance when this was true, they tell me they dont have to. i feel like they dont understand how much my life has changed and that because i got tx'd, im not "fixed"; although im very grateful that my life is a million times better. anyone else have similar issues?

 

[kaylamarie19]

i was just recently transplanted in feb of this year and im having a hard time with my non-cf friends. they were with me through the surgery and after, but now they tell me i had a non complicated surgery and i shouldnt complain about anything anymore. they think im playing a victim but when i ask them to give me an instance when this was true, they tell me they dont have to. i feel like they dont understand how much my life has changed and that because i got tx'd, im not "fixed"; although im very grateful that my life is a million times better. anyone else have similar issues?

 

[kaylamarie19]

i was just recently transplanted in feb of this year and im having a hard time with my non-cf friends. they were with me through the surgery and after, but now they tell me i had a non complicated surgery and i shouldnt complain about anything anymore. they think im playing a victim but when i ask them to give me an instance when this was true, they tell me they dont have to. i feel like they dont understand how much my life has changed and that because i got tx'd, im not "fixed"; although im very grateful that my life is a million times better. anyone else have similar issues?

 

[sheanna]

Hi Kayla, I'm sorry to hear that <img src="i/expressions/face-icon-small-sad.gif" border="0">

I posted a similar thread about CF and people just not getting it, and I think some people really gave good answers.

Like it was mentioned, I wonder how much people w/o CF really understand the inner struggle of it all. Many people see transplants as a permanent thing, just because they are uneducated about it. Tell them that just because you have new lungs, your CF isn't gone! (You'd be surprised how many people wouldn't understand that- I actually had a MICROBIOLOGY professor who asked me once, "And you said you had had CF in the past, right?" Like she thought it was something that went away.

Maybe sit them down and say, yes I am feeling better, but I'm still scared inside. Then they would know you are still emotionally hurting, if not physically. Let them know that as your friends, you would really appreciate their support, and even if you aren't 'complaining', that doesn't make things go away. Some people though, I just never understand.

I'm glad you are feeling better though! Lots of luck with your shiny new lungs <img src="i/expressions/face-icon-small-smile.gif" border="0">

~Shea

 

[sheanna]

Hi Kayla, I'm sorry to hear that <img src="i/expressions/face-icon-small-sad.gif" border="0">

I posted a similar thread about CF and people just not getting it, and I think some people really gave good answers.

Like it was mentioned, I wonder how much people w/o CF really understand the inner struggle of it all. Many people see transplants as a permanent thing, just because they are uneducated about it. Tell them that just because you have new lungs, your CF isn't gone! (You'd be surprised how many people wouldn't understand that- I actually had a MICROBIOLOGY professor who asked me once, "And you said you had had CF in the past, right?" Like she thought it was something that went away.

Maybe sit them down and say, yes I am feeling better, but I'm still scared inside. Then they would know you are still emotionally hurting, if not physically. Let them know that as your friends, you would really appreciate their support, and even if you aren't 'complaining', that doesn't make things go away. Some people though, I just never understand.

I'm glad you are feeling better though! Lots of luck with your shiny new lungs <img src="i/expressions/face-icon-small-smile.gif" border="0">

~Shea

 

[sheanna]

Hi Kayla, I'm sorry to hear that <img src="i/expressions/face-icon-small-sad.gif" border="0">

I posted a similar thread about CF and people just not getting it, and I think some people really gave good answers.

Like it was mentioned, I wonder how much people w/o CF really understand the inner struggle of it all. Many people see transplants as a permanent thing, just because they are uneducated about it. Tell them that just because you have new lungs, your CF isn't gone! (You'd be surprised how many people wouldn't understand that- I actually had a MICROBIOLOGY professor who asked me once, "And you said you had had CF in the past, right?" Like she thought it was something that went away.

Maybe sit them down and say, yes I am feeling better, but I'm still scared inside. Then they would know you are still emotionally hurting, if not physically. Let them know that as your friends, you would really appreciate their support, and even if you aren't 'complaining', that doesn't make things go away. Some people though, I just never understand.

I'm glad you are feeling better though! Lots of luck with your shiny new lungs <img src="i/expressions/face-icon-small-smile.gif" border="0">

~Shea

 

[sheanna]

Hi Kayla, I'm sorry to hear that <img src="i/expressions/face-icon-small-sad.gif" border="0">

I posted a similar thread about CF and people just not getting it, and I think some people really gave good answers.

Like it was mentioned, I wonder how much people w/o CF really understand the inner struggle of it all. Many people see transplants as a permanent thing, just because they are uneducated about it. Tell them that just because you have new lungs, your CF isn't gone! (You'd be surprised how many people wouldn't understand that- I actually had a MICROBIOLOGY professor who asked me once, "And you said you had had CF in the past, right?" Like she thought it was something that went away.

Maybe sit them down and say, yes I am feeling better, but I'm still scared inside. Then they would know you are still emotionally hurting, if not physically. Let them know that as your friends, you would really appreciate their support, and even if you aren't 'complaining', that doesn't make things go away. Some people though, I just never understand.

I'm glad you are feeling better though! Lots of luck with your shiny new lungs <img src="i/expressions/face-icon-small-smile.gif" border="0">

~Shea

 

[sheanna]

Hi Kayla, I'm sorry to hear that <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />I posted a similar thread about CF and people just not getting it, and I think some people really gave good answers.
<br />
<br />Like it was mentioned, I wonder how much people w/o CF really understand the inner struggle of it all. Many people see transplants as a permanent thing, just because they are uneducated about it. Tell them that just because you have new lungs, your CF isn't gone! (You'd be surprised how many people wouldn't understand that- I actually had a MICROBIOLOGY professor who asked me once, "And you said you had had CF in the past, right?" Like she thought it was something that went away.
<br />
<br />Maybe sit them down and say, yes I am feeling better, but I'm still scared inside. Then they would know you are still emotionally hurting, if not physically. Let them know that as your friends, you would really appreciate their support, and even if you aren't 'complaining', that doesn't make things go away. Some people though, I just never understand.
<br />
<br />I'm glad you are feeling better though! Lots of luck with your shiny new lungs <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />~Shea

 

[fr3ak]

Hi Kayla,

Unfortunately no one can possibly understand life post tx unless you live it...

Transplant is a lot like a secret sorority and you don't get your initiation until after you get your transplant and then everyone suddenly can tell you how it is...

Nothing prepares you for the complete upheaval you experience, that you go into hospital dying and wake up alive with even more uncertainty then what you had before...

The road ahead isn't an easy one to walk, it's not a straight path, and it's not without danger...But we walk it proudly none the less!

anyway, I do understand, I've walked the path, and still am walking it!

Good luck and congrats on the new lungs, may they provide you many years to come!

 

[fr3ak]

Hi Kayla,

Unfortunately no one can possibly understand life post tx unless you live it...

Transplant is a lot like a secret sorority and you don't get your initiation until after you get your transplant and then everyone suddenly can tell you how it is...

Nothing prepares you for the complete upheaval you experience, that you go into hospital dying and wake up alive with even more uncertainty then what you had before...

The road ahead isn't an easy one to walk, it's not a straight path, and it's not without danger...But we walk it proudly none the less!

anyway, I do understand, I've walked the path, and still am walking it!

Good luck and congrats on the new lungs, may they provide you many years to come!

 

[fr3ak]

Hi Kayla,

Unfortunately no one can possibly understand life post tx unless you live it...

Transplant is a lot like a secret sorority and you don't get your initiation until after you get your transplant and then everyone suddenly can tell you how it is...

Nothing prepares you for the complete upheaval you experience, that you go into hospital dying and wake up alive with even more uncertainty then what you had before...

The road ahead isn't an easy one to walk, it's not a straight path, and it's not without danger...But we walk it proudly none the less!

anyway, I do understand, I've walked the path, and still am walking it!

Good luck and congrats on the new lungs, may they provide you many years to come!

 

[fr3ak]

Hi Kayla,

Unfortunately no one can possibly understand life post tx unless you live it...

Transplant is a lot like a secret sorority and you don't get your initiation until after you get your transplant and then everyone suddenly can tell you how it is...

Nothing prepares you for the complete upheaval you experience, that you go into hospital dying and wake up alive with even more uncertainty then what you had before...

The road ahead isn't an easy one to walk, it's not a straight path, and it's not without danger...But we walk it proudly none the less!

anyway, I do understand, I've walked the path, and still am walking it!

Good luck and congrats on the new lungs, may they provide you many years to come!

 

[fr3ak]

Hi Kayla,
<br />
<br />Unfortunately no one can possibly understand life post tx unless you live it...
<br />
<br />Transplant is a lot like a secret sorority and you don't get your initiation until after you get your transplant and then everyone suddenly can tell you how it is...
<br />
<br />Nothing prepares you for the complete upheaval you experience, that you go into hospital dying and wake up alive with even more uncertainty then what you had before...
<br />
<br />The road ahead isn't an easy one to walk, it's not a straight path, and it's not without danger...But we walk it proudly none the less!
<br />
<br />anyway, I do understand, I've walked the path, and still am walking it!
<br />
<br />Good luck and congrats on the new lungs, may they provide you many years to come!

 

[rubyroselee]

Kayla,

Sorry your friends are being like that. Having a TX is such a unique and crazy experience, I think it's hard for many people to grasp. You go from being so sickly to virtually perfectly healthy in no time...that's how people see it. They see it like a cure, like you're all fixed now. There are so many more aspects to CF though that people don't outwardly see. You still have the pancreatic issues, the sinus issues, the reproductive issues, etc. So many of my TX'd friends have had multiple problems with their sinuses after TX. And also the problems related to the anti-rejection meds (kidney failure, diabetes, etc). There is a whole new realm of things that continue to happen to your body after TX.

Is there any way you can explain that to them so they can understand?

I think the best thing is to find support for yourself in the people who understand what you have gone through. Talk to others who have had lung TX's. Join "Second Wind" if you want (an online group for lung TX patients). You should have friends who understand what you've been through!

Take care.

 

[rubyroselee]

Kayla,

Sorry your friends are being like that. Having a TX is such a unique and crazy experience, I think it's hard for many people to grasp. You go from being so sickly to virtually perfectly healthy in no time...that's how people see it. They see it like a cure, like you're all fixed now. There are so many more aspects to CF though that people don't outwardly see. You still have the pancreatic issues, the sinus issues, the reproductive issues, etc. So many of my TX'd friends have had multiple problems with their sinuses after TX. And also the problems related to the anti-rejection meds (kidney failure, diabetes, etc). There is a whole new realm of things that continue to happen to your body after TX.

Is there any way you can explain that to them so they can understand?

I think the best thing is to find support for yourself in the people who understand what you have gone through. Talk to others who have had lung TX's. Join "Second Wind" if you want (an online group for lung TX patients). You should have friends who understand what you've been through!

Take care.

 

[rubyroselee]

Kayla,

Sorry your friends are being like that. Having a TX is such a unique and crazy experience, I think it's hard for many people to grasp. You go from being so sickly to virtually perfectly healthy in no time...that's how people see it. They see it like a cure, like you're all fixed now. There are so many more aspects to CF though that people don't outwardly see. You still have the pancreatic issues, the sinus issues, the reproductive issues, etc. So many of my TX'd friends have had multiple problems with their sinuses after TX. And also the problems related to the anti-rejection meds (kidney failure, diabetes, etc). There is a whole new realm of things that continue to happen to your body after TX.

Is there any way you can explain that to them so they can understand?

I think the best thing is to find support for yourself in the people who understand what you have gone through. Talk to others who have had lung TX's. Join "Second Wind" if you want (an online group for lung TX patients). You should have friends who understand what you've been through!

Take care.

 

[rubyroselee]

Kayla,

Sorry your friends are being like that. Having a TX is such a unique and crazy experience, I think it's hard for many people to grasp. You go from being so sickly to virtually perfectly healthy in no time...that's how people see it. They see it like a cure, like you're all fixed now. There are so many more aspects to CF though that people don't outwardly see. You still have the pancreatic issues, the sinus issues, the reproductive issues, etc. So many of my TX'd friends have had multiple problems with their sinuses after TX. And also the problems related to the anti-rejection meds (kidney failure, diabetes, etc). There is a whole new realm of things that continue to happen to your body after TX.

Is there any way you can explain that to them so they can understand?

I think the best thing is to find support for yourself in the people who understand what you have gone through. Talk to others who have had lung TX's. Join "Second Wind" if you want (an online group for lung TX patients). You should have friends who understand what you've been through!

Take care.

 

[rubyroselee]

Kayla,
<br />
<br />Sorry your friends are being like that. Having a TX is such a unique and crazy experience, I think it's hard for many people to grasp. You go from being so sickly to virtually perfectly healthy in no time...that's how people see it. They see it like a cure, like you're all fixed now. There are so many more aspects to CF though that people don't outwardly see. You still have the pancreatic issues, the sinus issues, the reproductive issues, etc. So many of my TX'd friends have had multiple problems with their sinuses after TX. And also the problems related to the anti-rejection meds (kidney failure, diabetes, etc). There is a whole new realm of things that continue to happen to your body after TX.
<br />
<br />Is there any way you can explain that to them so they can understand?
<br />
<br />I think the best thing is to find support for yourself in the people who understand what you have gone through. Talk to others who have had lung TX's. Join "Second Wind" if you want (an online group for lung TX patients). You should have friends who understand what you've been through!
<br />
<br />Take care.