Considering the choice of not lising.

[coltsfan715]

I agree with Mel a lot of it is the unknown.

For me I read a book when I was younger ... Breathing for a Living ... and to me that book is the worst possible book to read if you have any interest in a transplant at all. When I read that book I was determined NOT to put myself through the horror of all that she went through.

I have talked to friends - one in particular that many here knew before she passed (LittleDebbie)and for her she made her choice not on religion but on her body. She didn't feel she would make it through the surgery. She had told me any time she had a surgery in the past she had severe difficulties and had almost died several times. Due to that and how she felt going through the evaluation she opted not to go for transplant. She wanted to go out on her terms and know when it was coming. She didn't want to go into surgery and never come out and never see her family again without knowing that was going to happen.

I ultimately changed my mind because I figured well worst case scenario without transplant I WILL die. Worst case scenario with transplant I will die. Either way the worst case scenario was death and one way I was gauranteed to die the other I at least had a chance at more of a life.

I think religion can affect people as well as inner feelings. Just like people get gut feelings about other people some people just get gut feelings about the transplant process and aren't comfortable with it.

As said before it is a VERY personal choice and honestly I look at people that opt to NOT have a transplant with a different kind of respect. They are accepting of their situation and of death - for me I was terrified of dying and wanted to do everything in my power to stop that from happening and honestly I didn't want to go through the process leading up to death with CF.

I will stop but again there are so many reasons that people may opt to not have a transplant.

Linds

 

[coltsfan715]

I agree with Mel a lot of it is the unknown.

For me I read a book when I was younger ... Breathing for a Living ... and to me that book is the worst possible book to read if you have any interest in a transplant at all. When I read that book I was determined NOT to put myself through the horror of all that she went through.

I have talked to friends - one in particular that many here knew before she passed (LittleDebbie)and for her she made her choice not on religion but on her body. She didn't feel she would make it through the surgery. She had told me any time she had a surgery in the past she had severe difficulties and had almost died several times. Due to that and how she felt going through the evaluation she opted not to go for transplant. She wanted to go out on her terms and know when it was coming. She didn't want to go into surgery and never come out and never see her family again without knowing that was going to happen.

I ultimately changed my mind because I figured well worst case scenario without transplant I WILL die. Worst case scenario with transplant I will die. Either way the worst case scenario was death and one way I was gauranteed to die the other I at least had a chance at more of a life.

I think religion can affect people as well as inner feelings. Just like people get gut feelings about other people some people just get gut feelings about the transplant process and aren't comfortable with it.

As said before it is a VERY personal choice and honestly I look at people that opt to NOT have a transplant with a different kind of respect. They are accepting of their situation and of death - for me I was terrified of dying and wanted to do everything in my power to stop that from happening and honestly I didn't want to go through the process leading up to death with CF.

I will stop but again there are so many reasons that people may opt to not have a transplant.

Linds

 

[coltsfan715]

I agree with Mel a lot of it is the unknown.

For me I read a book when I was younger ... Breathing for a Living ... and to me that book is the worst possible book to read if you have any interest in a transplant at all. When I read that book I was determined NOT to put myself through the horror of all that she went through.

I have talked to friends - one in particular that many here knew before she passed (LittleDebbie)and for her she made her choice not on religion but on her body. She didn't feel she would make it through the surgery. She had told me any time she had a surgery in the past she had severe difficulties and had almost died several times. Due to that and how she felt going through the evaluation she opted not to go for transplant. She wanted to go out on her terms and know when it was coming. She didn't want to go into surgery and never come out and never see her family again without knowing that was going to happen.

I ultimately changed my mind because I figured well worst case scenario without transplant I WILL die. Worst case scenario with transplant I will die. Either way the worst case scenario was death and one way I was gauranteed to die the other I at least had a chance at more of a life.

I think religion can affect people as well as inner feelings. Just like people get gut feelings about other people some people just get gut feelings about the transplant process and aren't comfortable with it.

As said before it is a VERY personal choice and honestly I look at people that opt to NOT have a transplant with a different kind of respect. They are accepting of their situation and of death - for me I was terrified of dying and wanted to do everything in my power to stop that from happening and honestly I didn't want to go through the process leading up to death with CF.

I will stop but again there are so many reasons that people may opt to not have a transplant.

Linds

 

[coltsfan715]

I agree with Mel a lot of it is the unknown.

For me I read a book when I was younger ... Breathing for a Living ... and to me that book is the worst possible book to read if you have any interest in a transplant at all. When I read that book I was determined NOT to put myself through the horror of all that she went through.

I have talked to friends - one in particular that many here knew before she passed (LittleDebbie)and for her she made her choice not on religion but on her body. She didn't feel she would make it through the surgery. She had told me any time she had a surgery in the past she had severe difficulties and had almost died several times. Due to that and how she felt going through the evaluation she opted not to go for transplant. She wanted to go out on her terms and know when it was coming. She didn't want to go into surgery and never come out and never see her family again without knowing that was going to happen.

I ultimately changed my mind because I figured well worst case scenario without transplant I WILL die. Worst case scenario with transplant I will die. Either way the worst case scenario was death and one way I was gauranteed to die the other I at least had a chance at more of a life.

I think religion can affect people as well as inner feelings. Just like people get gut feelings about other people some people just get gut feelings about the transplant process and aren't comfortable with it.

As said before it is a VERY personal choice and honestly I look at people that opt to NOT have a transplant with a different kind of respect. They are accepting of their situation and of death - for me I was terrified of dying and wanted to do everything in my power to stop that from happening and honestly I didn't want to go through the process leading up to death with CF.

I will stop but again there are so many reasons that people may opt to not have a transplant.

Linds

 

[coltsfan715]

I agree with Mel a lot of it is the unknown.
<br />
<br />For me I read a book when I was younger ... Breathing for a Living ... and to me that book is the worst possible book to read if you have any interest in a transplant at all. When I read that book I was determined NOT to put myself through the horror of all that she went through.
<br />
<br />I have talked to friends - one in particular that many here knew before she passed (LittleDebbie)and for her she made her choice not on religion but on her body. She didn't feel she would make it through the surgery. She had told me any time she had a surgery in the past she had severe difficulties and had almost died several times. Due to that and how she felt going through the evaluation she opted not to go for transplant. She wanted to go out on her terms and know when it was coming. She didn't want to go into surgery and never come out and never see her family again without knowing that was going to happen.
<br />
<br />I ultimately changed my mind because I figured well worst case scenario without transplant I WILL die. Worst case scenario with transplant I will die. Either way the worst case scenario was death and one way I was gauranteed to die the other I at least had a chance at more of a life.
<br />
<br />I think religion can affect people as well as inner feelings. Just like people get gut feelings about other people some people just get gut feelings about the transplant process and aren't comfortable with it.
<br />
<br />As said before it is a VERY personal choice and honestly I look at people that opt to NOT have a transplant with a different kind of respect. They are accepting of their situation and of death - for me I was terrified of dying and wanted to do everything in my power to stop that from happening and honestly I didn't want to go through the process leading up to death with CF.
<br />
<br />I will stop but again there are so many reasons that people may opt to not have a transplant.
<br />
<br />Linds

 

[dewgirl]

This is a little off topic but I wanted to thank you all for being here, (especially Lindsey for me). I don't know any other cystics irl and to be able to ask about everyone's transplant experience on these forums have immensely helped me make the transplant decision.

Do it, don't do it, whichever way people decide, it is wonderful that you all are there for people to talk out their thoughts and fears. And unlike therapy, you are free!

CFer's rock!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[dewgirl]

This is a little off topic but I wanted to thank you all for being here, (especially Lindsey for me). I don't know any other cystics irl and to be able to ask about everyone's transplant experience on these forums have immensely helped me make the transplant decision.

Do it, don't do it, whichever way people decide, it is wonderful that you all are there for people to talk out their thoughts and fears. And unlike therapy, you are free!

CFer's rock!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[dewgirl]

This is a little off topic but I wanted to thank you all for being here, (especially Lindsey for me). I don't know any other cystics irl and to be able to ask about everyone's transplant experience on these forums have immensely helped me make the transplant decision.

Do it, don't do it, whichever way people decide, it is wonderful that you all are there for people to talk out their thoughts and fears. And unlike therapy, you are free!

CFer's rock!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[dewgirl]

This is a little off topic but I wanted to thank you all for being here, (especially Lindsey for me). I don't know any other cystics irl and to be able to ask about everyone's transplant experience on these forums have immensely helped me make the transplant decision.

Do it, don't do it, whichever way people decide, it is wonderful that you all are there for people to talk out their thoughts and fears. And unlike therapy, you are free!

CFer's rock!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[dewgirl]

This is a little off topic but I wanted to thank you all for being here, (especially Lindsey for me). I don't know any other cystics irl and to be able to ask about everyone's transplant experience on these forums have immensely helped me make the transplant decision.
<br />
<br />Do it, don't do it, whichever way people decide, it is wonderful that you all are there for people to talk out their thoughts and fears. And unlike therapy, you are free!
<br />
<br />CFer's rock!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Ready2Dance]

I was opposed, like Lindsey, until I went for evaluation. I was only going to the evaluation for my family. I had some friends die following their transplant and just didn't want to have to go through the surgery only to live a couple weeks. After a lot of soul searching I made the decision to go through with it, and I am SOOO happy that I did. Even with all of the struggles I've had with it over the last 9 months, I've done more living than I have been able to do in years!

Just know that most likely your family and friends with initially fight your decision to not be transplanted. Mine sure did. They love you and want you to give a fight to be around. Eventually most families I've heard of learn to respect the decision though. Best of luck with your decision and letting people know what your choice is <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ready2Dance]

I was opposed, like Lindsey, until I went for evaluation. I was only going to the evaluation for my family. I had some friends die following their transplant and just didn't want to have to go through the surgery only to live a couple weeks. After a lot of soul searching I made the decision to go through with it, and I am SOOO happy that I did. Even with all of the struggles I've had with it over the last 9 months, I've done more living than I have been able to do in years!

Just know that most likely your family and friends with initially fight your decision to not be transplanted. Mine sure did. They love you and want you to give a fight to be around. Eventually most families I've heard of learn to respect the decision though. Best of luck with your decision and letting people know what your choice is <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ready2Dance]

I was opposed, like Lindsey, until I went for evaluation. I was only going to the evaluation for my family. I had some friends die following their transplant and just didn't want to have to go through the surgery only to live a couple weeks. After a lot of soul searching I made the decision to go through with it, and I am SOOO happy that I did. Even with all of the struggles I've had with it over the last 9 months, I've done more living than I have been able to do in years!

Just know that most likely your family and friends with initially fight your decision to not be transplanted. Mine sure did. They love you and want you to give a fight to be around. Eventually most families I've heard of learn to respect the decision though. Best of luck with your decision and letting people know what your choice is <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ready2Dance]

I was opposed, like Lindsey, until I went for evaluation. I was only going to the evaluation for my family. I had some friends die following their transplant and just didn't want to have to go through the surgery only to live a couple weeks. After a lot of soul searching I made the decision to go through with it, and I am SOOO happy that I did. Even with all of the struggles I've had with it over the last 9 months, I've done more living than I have been able to do in years!

Just know that most likely your family and friends with initially fight your decision to not be transplanted. Mine sure did. They love you and want you to give a fight to be around. Eventually most families I've heard of learn to respect the decision though. Best of luck with your decision and letting people know what your choice is <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ready2Dance]

I was opposed, like Lindsey, until I went for evaluation. I was only going to the evaluation for my family. I had some friends die following their transplant and just didn't want to have to go through the surgery only to live a couple weeks. After a lot of soul searching I made the decision to go through with it, and I am SOOO happy that I did. Even with all of the struggles I've had with it over the last 9 months, I've done more living than I have been able to do in years!
<br />
<br />Just know that most likely your family and friends with initially fight your decision to not be transplanted. Mine sure did. They love you and want you to give a fight to be around. Eventually most families I've heard of learn to respect the decision though. Best of luck with your decision and letting people know what your choice is <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Transplantmommy]

I guess that I am not the typical CFer in that I had no questions as to if I wanted transplant or not. I was originally faced with the idea when I was about 14 when the docs sent me for liver transplant evaluations because that's when my cirrhosis was discovered. Maybe facing that is what made me ask "where do I sign up?" when I was told in November 2004 that I was going to need double lung and liver transplant. I was married to Nate but we didn't have any children at that time, so that wasn't even a thought. Maybe I just knew that there was more for me to do when transplant was brought to my attention.

I started the evaluations in June 2005 and right off the bat, the docs at Cleveland Clinic weren't sure if they could do double lung and liver because they had never done it before, but I stayed right with them and continued to go through the evaluations, not know which way they were going to go. I found out on August 1, 2005 that I was 9 weeks pregnant and when the docs told me to terminate the pregnancy and move along with the transplant, I couldn't do it. I knew that I had to fight for the baby first and then go through the transplant....if I was that lucky.

I do believe that after I had Brady, he was the reason that I fought so hard for the transplant even when I only had 7% lung function left. I didn't want to leave Brady behind, I didn't want to leave Nate behind...I had reasons to stay and I am not leaving until I am ready. I think that's what my driving force is...my family and my strong will to get my story out there and give other patients hope.

I can understand people not wanting to go through the transplant process. It's not easy...probably one of the hardest things that a CFer will ever have to do. My transplant process was easier than others, but I still had my bumps in the road. I have had rejection twice and I got a bad infection in my large intestine and had to have it removed and had a colostomy bag for 9 months...but I'm still here!! Life has been great since the transplant and I'm glad that I chose this course.

Just think about the pros and cons of being listed or not. In the end, the decision that you make will be right for you and your family/friends will understand. I have a double lung and liver transplant buddy whose brother chose not to have transplant and he passed in January of this year. The whole family is at peace with his decision and they know why he chose what he did.

Everyone is different even though we all have the same disease...you will choose what is right for you.

 

[Transplantmommy]

I guess that I am not the typical CFer in that I had no questions as to if I wanted transplant or not. I was originally faced with the idea when I was about 14 when the docs sent me for liver transplant evaluations because that's when my cirrhosis was discovered. Maybe facing that is what made me ask "where do I sign up?" when I was told in November 2004 that I was going to need double lung and liver transplant. I was married to Nate but we didn't have any children at that time, so that wasn't even a thought. Maybe I just knew that there was more for me to do when transplant was brought to my attention.

I started the evaluations in June 2005 and right off the bat, the docs at Cleveland Clinic weren't sure if they could do double lung and liver because they had never done it before, but I stayed right with them and continued to go through the evaluations, not know which way they were going to go. I found out on August 1, 2005 that I was 9 weeks pregnant and when the docs told me to terminate the pregnancy and move along with the transplant, I couldn't do it. I knew that I had to fight for the baby first and then go through the transplant....if I was that lucky.

I do believe that after I had Brady, he was the reason that I fought so hard for the transplant even when I only had 7% lung function left. I didn't want to leave Brady behind, I didn't want to leave Nate behind...I had reasons to stay and I am not leaving until I am ready. I think that's what my driving force is...my family and my strong will to get my story out there and give other patients hope.

I can understand people not wanting to go through the transplant process. It's not easy...probably one of the hardest things that a CFer will ever have to do. My transplant process was easier than others, but I still had my bumps in the road. I have had rejection twice and I got a bad infection in my large intestine and had to have it removed and had a colostomy bag for 9 months...but I'm still here!! Life has been great since the transplant and I'm glad that I chose this course.

Just think about the pros and cons of being listed or not. In the end, the decision that you make will be right for you and your family/friends will understand. I have a double lung and liver transplant buddy whose brother chose not to have transplant and he passed in January of this year. The whole family is at peace with his decision and they know why he chose what he did.

Everyone is different even though we all have the same disease...you will choose what is right for you.

 

[Transplantmommy]

I guess that I am not the typical CFer in that I had no questions as to if I wanted transplant or not. I was originally faced with the idea when I was about 14 when the docs sent me for liver transplant evaluations because that's when my cirrhosis was discovered. Maybe facing that is what made me ask "where do I sign up?" when I was told in November 2004 that I was going to need double lung and liver transplant. I was married to Nate but we didn't have any children at that time, so that wasn't even a thought. Maybe I just knew that there was more for me to do when transplant was brought to my attention.

I started the evaluations in June 2005 and right off the bat, the docs at Cleveland Clinic weren't sure if they could do double lung and liver because they had never done it before, but I stayed right with them and continued to go through the evaluations, not know which way they were going to go. I found out on August 1, 2005 that I was 9 weeks pregnant and when the docs told me to terminate the pregnancy and move along with the transplant, I couldn't do it. I knew that I had to fight for the baby first and then go through the transplant....if I was that lucky.

I do believe that after I had Brady, he was the reason that I fought so hard for the transplant even when I only had 7% lung function left. I didn't want to leave Brady behind, I didn't want to leave Nate behind...I had reasons to stay and I am not leaving until I am ready. I think that's what my driving force is...my family and my strong will to get my story out there and give other patients hope.

I can understand people not wanting to go through the transplant process. It's not easy...probably one of the hardest things that a CFer will ever have to do. My transplant process was easier than others, but I still had my bumps in the road. I have had rejection twice and I got a bad infection in my large intestine and had to have it removed and had a colostomy bag for 9 months...but I'm still here!! Life has been great since the transplant and I'm glad that I chose this course.

Just think about the pros and cons of being listed or not. In the end, the decision that you make will be right for you and your family/friends will understand. I have a double lung and liver transplant buddy whose brother chose not to have transplant and he passed in January of this year. The whole family is at peace with his decision and they know why he chose what he did.

Everyone is different even though we all have the same disease...you will choose what is right for you.

 

[Transplantmommy]

I guess that I am not the typical CFer in that I had no questions as to if I wanted transplant or not. I was originally faced with the idea when I was about 14 when the docs sent me for liver transplant evaluations because that's when my cirrhosis was discovered. Maybe facing that is what made me ask "where do I sign up?" when I was told in November 2004 that I was going to need double lung and liver transplant. I was married to Nate but we didn't have any children at that time, so that wasn't even a thought. Maybe I just knew that there was more for me to do when transplant was brought to my attention.

I started the evaluations in June 2005 and right off the bat, the docs at Cleveland Clinic weren't sure if they could do double lung and liver because they had never done it before, but I stayed right with them and continued to go through the evaluations, not know which way they were going to go. I found out on August 1, 2005 that I was 9 weeks pregnant and when the docs told me to terminate the pregnancy and move along with the transplant, I couldn't do it. I knew that I had to fight for the baby first and then go through the transplant....if I was that lucky.

I do believe that after I had Brady, he was the reason that I fought so hard for the transplant even when I only had 7% lung function left. I didn't want to leave Brady behind, I didn't want to leave Nate behind...I had reasons to stay and I am not leaving until I am ready. I think that's what my driving force is...my family and my strong will to get my story out there and give other patients hope.

I can understand people not wanting to go through the transplant process. It's not easy...probably one of the hardest things that a CFer will ever have to do. My transplant process was easier than others, but I still had my bumps in the road. I have had rejection twice and I got a bad infection in my large intestine and had to have it removed and had a colostomy bag for 9 months...but I'm still here!! Life has been great since the transplant and I'm glad that I chose this course.

Just think about the pros and cons of being listed or not. In the end, the decision that you make will be right for you and your family/friends will understand. I have a double lung and liver transplant buddy whose brother chose not to have transplant and he passed in January of this year. The whole family is at peace with his decision and they know why he chose what he did.

Everyone is different even though we all have the same disease...you will choose what is right for you.

 

[Transplantmommy]

I guess that I am not the typical CFer in that I had no questions as to if I wanted transplant or not. I was originally faced with the idea when I was about 14 when the docs sent me for liver transplant evaluations because that's when my cirrhosis was discovered. Maybe facing that is what made me ask "where do I sign up?" when I was told in November 2004 that I was going to need double lung and liver transplant. I was married to Nate but we didn't have any children at that time, so that wasn't even a thought. Maybe I just knew that there was more for me to do when transplant was brought to my attention.
<br />
<br />I started the evaluations in June 2005 and right off the bat, the docs at Cleveland Clinic weren't sure if they could do double lung and liver because they had never done it before, but I stayed right with them and continued to go through the evaluations, not know which way they were going to go. I found out on August 1, 2005 that I was 9 weeks pregnant and when the docs told me to terminate the pregnancy and move along with the transplant, I couldn't do it. I knew that I had to fight for the baby first and then go through the transplant....if I was that lucky.
<br />
<br />I do believe that after I had Brady, he was the reason that I fought so hard for the transplant even when I only had 7% lung function left. I didn't want to leave Brady behind, I didn't want to leave Nate behind...I had reasons to stay and I am not leaving until I am ready. I think that's what my driving force is...my family and my strong will to get my story out there and give other patients hope.
<br />
<br />I can understand people not wanting to go through the transplant process. It's not easy...probably one of the hardest things that a CFer will ever have to do. My transplant process was easier than others, but I still had my bumps in the road. I have had rejection twice and I got a bad infection in my large intestine and had to have it removed and had a colostomy bag for 9 months...but I'm still here!! Life has been great since the transplant and I'm glad that I chose this course.
<br />
<br />Just think about the pros and cons of being listed or not. In the end, the decision that you make will be right for you and your family/friends will understand. I have a double lung and liver transplant buddy whose brother chose not to have transplant and he passed in January of this year. The whole family is at peace with his decision and they know why he chose what he did.
<br />
<br />Everyone is different even though we all have the same disease...you will choose what is right for you.