Considering the choice of not lising.

[Lex]

I am in the hospital waiting for a donor. That's the course my CF has taken me. I began the evaluation process about a year ago, and I'm glad I did.

That being said, I can't imagine not having the transplant option. I am suffering terribly -- hooked up to high amount of oxygen (which is why I can't be at home). So, to have CF run its course means spending the last 6 months or so in isolation at the hospital, and eventually to ICU, and so on. This is no fun, and if I didn't have TX as an option, I would most likely take my own life rather than die this slow, agonizing death.

I'm not saying your decision is wrong--I'm saying that - for me - I couldn't let CF run its course with or without TX. This is no way to die....

 

[Lex]

I am in the hospital waiting for a donor. That's the course my CF has taken me. I began the evaluation process about a year ago, and I'm glad I did.

That being said, I can't imagine not having the transplant option. I am suffering terribly -- hooked up to high amount of oxygen (which is why I can't be at home). So, to have CF run its course means spending the last 6 months or so in isolation at the hospital, and eventually to ICU, and so on. This is no fun, and if I didn't have TX as an option, I would most likely take my own life rather than die this slow, agonizing death.

I'm not saying your decision is wrong--I'm saying that - for me - I couldn't let CF run its course with or without TX. This is no way to die....

 

[Lex]

I am in the hospital waiting for a donor. That's the course my CF has taken me. I began the evaluation process about a year ago, and I'm glad I did.

That being said, I can't imagine not having the transplant option. I am suffering terribly -- hooked up to high amount of oxygen (which is why I can't be at home). So, to have CF run its course means spending the last 6 months or so in isolation at the hospital, and eventually to ICU, and so on. This is no fun, and if I didn't have TX as an option, I would most likely take my own life rather than die this slow, agonizing death.

I'm not saying your decision is wrong--I'm saying that - for me - I couldn't let CF run its course with or without TX. This is no way to die....

 

[Lex]

I am in the hospital waiting for a donor. That's the course my CF has taken me. I began the evaluation process about a year ago, and I'm glad I did.

That being said, I can't imagine not having the transplant option. I am suffering terribly -- hooked up to high amount of oxygen (which is why I can't be at home). So, to have CF run its course means spending the last 6 months or so in isolation at the hospital, and eventually to ICU, and so on. This is no fun, and if I didn't have TX as an option, I would most likely take my own life rather than die this slow, agonizing death.

I'm not saying your decision is wrong--I'm saying that - for me - I couldn't let CF run its course with or without TX. This is no way to die....

 

[Lex]

I am in the hospital waiting for a donor. That's the course my CF has taken me. I began the evaluation process about a year ago, and I'm glad I did.
<br />
<br />That being said, I can't imagine not having the transplant option. I am suffering terribly -- hooked up to high amount of oxygen (which is why I can't be at home). So, to have CF run its course means spending the last 6 months or so in isolation at the hospital, and eventually to ICU, and so on. This is no fun, and if I didn't have TX as an option, I would most likely take my own life rather than die this slow, agonizing death.
<br />
<br />I'm not saying your decision is wrong--I'm saying that - for me - I couldn't let CF run its course with or without TX. This is no way to die....

 

[coltsfan715]

I chose to have a transplant or to pursue that option and for me thus far (2.5 yrs post) I have had a fantastic experience with it. That being said when I first approached transplant I was opposed. I was unsure and just wanted to get information to make an informed decision for myself and my family and other loved ones. I figured I owed it to my loved ones to make an informed decision rather than just I am done and this is how I want to go out. Not that there is anything wrong with that thinking that is just not how I chose to go.

For me I went through the evaluation and decided that I wasn't done doing the things I wanted and I had a lot left to accomplish with my life. So I went for it. Throughout my decision making process though no one in my family pressured me to choose transplant I actually had all of my family and closest friends tell me obviously we want you to go for it because we love you but if you don't want too we will support you completely.

I have had a few friends that have opted to live it to the end without a transplant and I didn't understand at first but after talking with them and just asking them why not I was fine with it and I supported them. As someone else mentioned you have to do this for YOU and if YOU can not or are not completely committed to the work and the difficulties that the whole process can bring then you don't need to do it. Don't get transplanted for family and friends basically get transplanted for you because you are the one that will have to live with the decision everyday for the rest of your life.

I agree that you should talk to your therapist about how to approach your family and friends about this. I remember just basically sitting with my mom and my ex and telling them that I just needed them to be okay with my being scared or confused or what have you. You could maybe approach it that way. If you have reasons as to why you don't want to pursue a transplant then organize those thoughts because inevitably there will be a why not? I am sure it will be hard for family and friends to accept but if you explain that the decision isn't easy for you and that you just need to know that they will support you I am sure you will get a better or more supportive response than you think. I realized going through my transplant that my fears of peoples reactions were somewhat unfounded. Everyone was concerned about me and just wanted what was best for me and what made me happy, comfortable or at ease.

Best of Luck in this process whatever your ultimate decision.

Lindsey

 

[coltsfan715]

I chose to have a transplant or to pursue that option and for me thus far (2.5 yrs post) I have had a fantastic experience with it. That being said when I first approached transplant I was opposed. I was unsure and just wanted to get information to make an informed decision for myself and my family and other loved ones. I figured I owed it to my loved ones to make an informed decision rather than just I am done and this is how I want to go out. Not that there is anything wrong with that thinking that is just not how I chose to go.

For me I went through the evaluation and decided that I wasn't done doing the things I wanted and I had a lot left to accomplish with my life. So I went for it. Throughout my decision making process though no one in my family pressured me to choose transplant I actually had all of my family and closest friends tell me obviously we want you to go for it because we love you but if you don't want too we will support you completely.

I have had a few friends that have opted to live it to the end without a transplant and I didn't understand at first but after talking with them and just asking them why not I was fine with it and I supported them. As someone else mentioned you have to do this for YOU and if YOU can not or are not completely committed to the work and the difficulties that the whole process can bring then you don't need to do it. Don't get transplanted for family and friends basically get transplanted for you because you are the one that will have to live with the decision everyday for the rest of your life.

I agree that you should talk to your therapist about how to approach your family and friends about this. I remember just basically sitting with my mom and my ex and telling them that I just needed them to be okay with my being scared or confused or what have you. You could maybe approach it that way. If you have reasons as to why you don't want to pursue a transplant then organize those thoughts because inevitably there will be a why not? I am sure it will be hard for family and friends to accept but if you explain that the decision isn't easy for you and that you just need to know that they will support you I am sure you will get a better or more supportive response than you think. I realized going through my transplant that my fears of peoples reactions were somewhat unfounded. Everyone was concerned about me and just wanted what was best for me and what made me happy, comfortable or at ease.

Best of Luck in this process whatever your ultimate decision.

Lindsey

 

[coltsfan715]

I chose to have a transplant or to pursue that option and for me thus far (2.5 yrs post) I have had a fantastic experience with it. That being said when I first approached transplant I was opposed. I was unsure and just wanted to get information to make an informed decision for myself and my family and other loved ones. I figured I owed it to my loved ones to make an informed decision rather than just I am done and this is how I want to go out. Not that there is anything wrong with that thinking that is just not how I chose to go.

For me I went through the evaluation and decided that I wasn't done doing the things I wanted and I had a lot left to accomplish with my life. So I went for it. Throughout my decision making process though no one in my family pressured me to choose transplant I actually had all of my family and closest friends tell me obviously we want you to go for it because we love you but if you don't want too we will support you completely.

I have had a few friends that have opted to live it to the end without a transplant and I didn't understand at first but after talking with them and just asking them why not I was fine with it and I supported them. As someone else mentioned you have to do this for YOU and if YOU can not or are not completely committed to the work and the difficulties that the whole process can bring then you don't need to do it. Don't get transplanted for family and friends basically get transplanted for you because you are the one that will have to live with the decision everyday for the rest of your life.

I agree that you should talk to your therapist about how to approach your family and friends about this. I remember just basically sitting with my mom and my ex and telling them that I just needed them to be okay with my being scared or confused or what have you. You could maybe approach it that way. If you have reasons as to why you don't want to pursue a transplant then organize those thoughts because inevitably there will be a why not? I am sure it will be hard for family and friends to accept but if you explain that the decision isn't easy for you and that you just need to know that they will support you I am sure you will get a better or more supportive response than you think. I realized going through my transplant that my fears of peoples reactions were somewhat unfounded. Everyone was concerned about me and just wanted what was best for me and what made me happy, comfortable or at ease.

Best of Luck in this process whatever your ultimate decision.

Lindsey

 

[coltsfan715]

I chose to have a transplant or to pursue that option and for me thus far (2.5 yrs post) I have had a fantastic experience with it. That being said when I first approached transplant I was opposed. I was unsure and just wanted to get information to make an informed decision for myself and my family and other loved ones. I figured I owed it to my loved ones to make an informed decision rather than just I am done and this is how I want to go out. Not that there is anything wrong with that thinking that is just not how I chose to go.

For me I went through the evaluation and decided that I wasn't done doing the things I wanted and I had a lot left to accomplish with my life. So I went for it. Throughout my decision making process though no one in my family pressured me to choose transplant I actually had all of my family and closest friends tell me obviously we want you to go for it because we love you but if you don't want too we will support you completely.

I have had a few friends that have opted to live it to the end without a transplant and I didn't understand at first but after talking with them and just asking them why not I was fine with it and I supported them. As someone else mentioned you have to do this for YOU and if YOU can not or are not completely committed to the work and the difficulties that the whole process can bring then you don't need to do it. Don't get transplanted for family and friends basically get transplanted for you because you are the one that will have to live with the decision everyday for the rest of your life.

I agree that you should talk to your therapist about how to approach your family and friends about this. I remember just basically sitting with my mom and my ex and telling them that I just needed them to be okay with my being scared or confused or what have you. You could maybe approach it that way. If you have reasons as to why you don't want to pursue a transplant then organize those thoughts because inevitably there will be a why not? I am sure it will be hard for family and friends to accept but if you explain that the decision isn't easy for you and that you just need to know that they will support you I am sure you will get a better or more supportive response than you think. I realized going through my transplant that my fears of peoples reactions were somewhat unfounded. Everyone was concerned about me and just wanted what was best for me and what made me happy, comfortable or at ease.

Best of Luck in this process whatever your ultimate decision.

Lindsey

 

[coltsfan715]

I chose to have a transplant or to pursue that option and for me thus far (2.5 yrs post) I have had a fantastic experience with it. That being said when I first approached transplant I was opposed. I was unsure and just wanted to get information to make an informed decision for myself and my family and other loved ones. I figured I owed it to my loved ones to make an informed decision rather than just I am done and this is how I want to go out. Not that there is anything wrong with that thinking that is just not how I chose to go.
<br />
<br />For me I went through the evaluation and decided that I wasn't done doing the things I wanted and I had a lot left to accomplish with my life. So I went for it. Throughout my decision making process though no one in my family pressured me to choose transplant I actually had all of my family and closest friends tell me obviously we want you to go for it because we love you but if you don't want too we will support you completely.
<br />
<br />I have had a few friends that have opted to live it to the end without a transplant and I didn't understand at first but after talking with them and just asking them why not I was fine with it and I supported them. As someone else mentioned you have to do this for YOU and if YOU can not or are not completely committed to the work and the difficulties that the whole process can bring then you don't need to do it. Don't get transplanted for family and friends basically get transplanted for you because you are the one that will have to live with the decision everyday for the rest of your life.
<br />
<br />I agree that you should talk to your therapist about how to approach your family and friends about this. I remember just basically sitting with my mom and my ex and telling them that I just needed them to be okay with my being scared or confused or what have you. You could maybe approach it that way. If you have reasons as to why you don't want to pursue a transplant then organize those thoughts because inevitably there will be a why not? I am sure it will be hard for family and friends to accept but if you explain that the decision isn't easy for you and that you just need to know that they will support you I am sure you will get a better or more supportive response than you think. I realized going through my transplant that my fears of peoples reactions were somewhat unfounded. Everyone was concerned about me and just wanted what was best for me and what made me happy, comfortable or at ease.
<br />
<br />Best of Luck in this process whatever your ultimate decision.
<br />
<br />Lindsey

 

[Lex]

I'm curious...what are the reasons to not get a transplant?

---not aimed at Beowulf....I'm curious about anyone not wanting TX.

 

[Lex]

I'm curious...what are the reasons to not get a transplant?

---not aimed at Beowulf....I'm curious about anyone not wanting TX.

 

[Lex]

I'm curious...what are the reasons to not get a transplant?

---not aimed at Beowulf....I'm curious about anyone not wanting TX.

 

[Lex]

I'm curious...what are the reasons to not get a transplant?

---not aimed at Beowulf....I'm curious about anyone not wanting TX.

 

[Lex]

I'm curious...what are the reasons to not get a transplant?
<br />
<br /> ---not aimed at Beowulf....I'm curious about anyone not wanting TX.

 

[JazzysMom]

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

I'm curious...what are the reasons to not get a transplant?

---not aimed at Beowulf....I'm curious about anyone not wanting TX.</end quote></div>

<b>WARNING this ?? has caused some major controversy in the past so PLEASE answer respectfully!</b>

I think some of it is religous beliefs, but I also think its the unknown. Up until recently (this year)....I was dead set against it.

I was more worried about possibly relocating my family or being away from them for months or years to see me possibly go through hell & back with surgery/recovery for the what ifs.

I will be honest & say that the biggest thing was my daughter. I didnt want her to associate ANYTHING regarding tx with death & have it stick in her head.

Now that my CF has progressed & that I cant do what I want with her.....it has made me realize that all of THESE things stick in her head also.

I want to see her celebrate her Sweet 16, graduate, go on her first real date etc. I might not due that if I am not willing to consider tx!

So now I have choice to get listed & am kind of relieved. I have heard the horros & the joys of tx. I hope & pray that if/when I get new lungs that its more joy then horror, but I will never know without trying.

There will always be a part of me that understands someone not wantint to do it tho & if I didnt have my daughter....I might not have changed my mind!

 

[JazzysMom]

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

I'm curious...what are the reasons to not get a transplant?

---not aimed at Beowulf....I'm curious about anyone not wanting TX.</end quote></div>

<b>WARNING this ?? has caused some major controversy in the past so PLEASE answer respectfully!</b>

I think some of it is religous beliefs, but I also think its the unknown. Up until recently (this year)....I was dead set against it.

I was more worried about possibly relocating my family or being away from them for months or years to see me possibly go through hell & back with surgery/recovery for the what ifs.

I will be honest & say that the biggest thing was my daughter. I didnt want her to associate ANYTHING regarding tx with death & have it stick in her head.

Now that my CF has progressed & that I cant do what I want with her.....it has made me realize that all of THESE things stick in her head also.

I want to see her celebrate her Sweet 16, graduate, go on her first real date etc. I might not due that if I am not willing to consider tx!

So now I have choice to get listed & am kind of relieved. I have heard the horros & the joys of tx. I hope & pray that if/when I get new lungs that its more joy then horror, but I will never know without trying.

There will always be a part of me that understands someone not wantint to do it tho & if I didnt have my daughter....I might not have changed my mind!

 

[JazzysMom]

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

I'm curious...what are the reasons to not get a transplant?

---not aimed at Beowulf....I'm curious about anyone not wanting TX.</end quote></div>

<b>WARNING this ?? has caused some major controversy in the past so PLEASE answer respectfully!</b>

I think some of it is religous beliefs, but I also think its the unknown. Up until recently (this year)....I was dead set against it.

I was more worried about possibly relocating my family or being away from them for months or years to see me possibly go through hell & back with surgery/recovery for the what ifs.

I will be honest & say that the biggest thing was my daughter. I didnt want her to associate ANYTHING regarding tx with death & have it stick in her head.

Now that my CF has progressed & that I cant do what I want with her.....it has made me realize that all of THESE things stick in her head also.

I want to see her celebrate her Sweet 16, graduate, go on her first real date etc. I might not due that if I am not willing to consider tx!

So now I have choice to get listed & am kind of relieved. I have heard the horros & the joys of tx. I hope & pray that if/when I get new lungs that its more joy then horror, but I will never know without trying.

There will always be a part of me that understands someone not wantint to do it tho & if I didnt have my daughter....I might not have changed my mind!

 

[JazzysMom]

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

I'm curious...what are the reasons to not get a transplant?

---not aimed at Beowulf....I'm curious about anyone not wanting TX.</end quote>

<b>WARNING this ?? has caused some major controversy in the past so PLEASE answer respectfully!</b>

I think some of it is religous beliefs, but I also think its the unknown. Up until recently (this year)....I was dead set against it.

I was more worried about possibly relocating my family or being away from them for months or years to see me possibly go through hell & back with surgery/recovery for the what ifs.

I will be honest & say that the biggest thing was my daughter. I didnt want her to associate ANYTHING regarding tx with death & have it stick in her head.

Now that my CF has progressed & that I cant do what I want with her.....it has made me realize that all of THESE things stick in her head also.

I want to see her celebrate her Sweet 16, graduate, go on her first real date etc. I might not due that if I am not willing to consider tx!

So now I have choice to get listed & am kind of relieved. I have heard the horros & the joys of tx. I hope & pray that if/when I get new lungs that its more joy then horror, but I will never know without trying.

There will always be a part of me that understands someone not wantint to do it tho & if I didnt have my daughter....I might not have changed my mind!

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lex</b></i>
<br />
<br />I'm curious...what are the reasons to not get a transplant?
<br />
<br /> ---not aimed at Beowulf....I'm curious about anyone not wanting TX.</end quote>
<br />
<br /><b>WARNING this ?? has caused some major controversy in the past so PLEASE answer respectfully!</b>
<br />
<br />I think some of it is religous beliefs, but I also think its the unknown. Up until recently (this year)....I was dead set against it.
<br />
<br />I was more worried about possibly relocating my family or being away from them for months or years to see me possibly go through hell & back with surgery/recovery for the what ifs.
<br />
<br />I will be honest & say that the biggest thing was my daughter. I didnt want her to associate ANYTHING regarding tx with death & have it stick in her head.
<br />
<br />Now that my CF has progressed & that I cant do what I want with her.....it has made me realize that all of THESE things stick in her head also.
<br />
<br />I want to see her celebrate her Sweet 16, graduate, go on her first real date etc. I might not due that if I am not willing to consider tx!
<br />
<br />So now I have choice to get listed & am kind of relieved. I have heard the horros & the joys of tx. I hope & pray that if/when I get new lungs that its more joy then horror, but I will never know without trying.
<br />
<br />There will always be a part of me that understands someone not wantint to do it tho & if I didnt have my daughter....I might not have changed my mind!