needs advice with a transplant....

Gingerloveslife · Apr 20, 2009

Hey Nuttzzy!

My fev1 is exactly where yours is and my feelings about transplant are exactly what yours are. Talk of transplant scares the living daylights out of me.

What I have found to help is reading other peoples accounts of it. No, usually they are not perfect stories. Just about everyone encounters unexpected problems which makes transplant that much more scarier. The thing is there are so many people who are so ecstatic that they had a tranplant. Their enthusiasm then makes me think that okay, things may go wrong but what if I did get through it and got to enjoy the new lungs. Would the thought of being able to run and play with my little boy outweigh the fear of transplant? Like you, the fear just makes this answer so unclear. I just don't know.

My response to all this fear of transplant is to get busy with my health. I read the cf forums daily to see what is helping other people. Because of this, I was just started on singulair, have focused on staying away from all irritants, have ordered fizzy NAC, and have started walking 2 miles a day. Trying to work on my health helps me in my mind keep thoughts of transplant away. I know that in the future I will either get a transplant or I won't. I just think that unless something changes for the worse I am going to focus on trying to maintain 43% instead of focusing on getting a transplant.

My doctor suggests waiting untill I get a little closer to 30%, then get evaluated but don't get listed until I can say to myself would it be worth dying to get the chance of a new life. So until I worsen and get to this point, I am going to focus on living and try not to think about transplant at least while I am in the 40's anyway. This is a very personal decision, so just do what is best for you and enjoy the here and now! Ginger

Gingerloveslife · Apr 20, 2009

Hey Nuttzzy!

My fev1 is exactly where yours is and my feelings about transplant are exactly what yours are. Talk of transplant scares the living daylights out of me.

What I have found to help is reading other peoples accounts of it. No, usually they are not perfect stories. Just about everyone encounters unexpected problems which makes transplant that much more scarier. The thing is there are so many people who are so ecstatic that they had a tranplant. Their enthusiasm then makes me think that okay, things may go wrong but what if I did get through it and got to enjoy the new lungs. Would the thought of being able to run and play with my little boy outweigh the fear of transplant? Like you, the fear just makes this answer so unclear. I just don't know.

My response to all this fear of transplant is to get busy with my health. I read the cf forums daily to see what is helping other people. Because of this, I was just started on singulair, have focused on staying away from all irritants, have ordered fizzy NAC, and have started walking 2 miles a day. Trying to work on my health helps me in my mind keep thoughts of transplant away. I know that in the future I will either get a transplant or I won't. I just think that unless something changes for the worse I am going to focus on trying to maintain 43% instead of focusing on getting a transplant.

My doctor suggests waiting untill I get a little closer to 30%, then get evaluated but don't get listed until I can say to myself would it be worth dying to get the chance of a new life. So until I worsen and get to this point, I am going to focus on living and try not to think about transplant at least while I am in the 40's anyway. This is a very personal decision, so just do what is best for you and enjoy the here and now! Ginger

Gingerloveslife · Apr 20, 2009

Hey Nuttzzy!

My fev1 is exactly where yours is and my feelings about transplant are exactly what yours are. Talk of transplant scares the living daylights out of me.

What I have found to help is reading other peoples accounts of it. No, usually they are not perfect stories. Just about everyone encounters unexpected problems which makes transplant that much more scarier. The thing is there are so many people who are so ecstatic that they had a tranplant. Their enthusiasm then makes me think that okay, things may go wrong but what if I did get through it and got to enjoy the new lungs. Would the thought of being able to run and play with my little boy outweigh the fear of transplant? Like you, the fear just makes this answer so unclear. I just don't know.

My response to all this fear of transplant is to get busy with my health. I read the cf forums daily to see what is helping other people. Because of this, I was just started on singulair, have focused on staying away from all irritants, have ordered fizzy NAC, and have started walking 2 miles a day. Trying to work on my health helps me in my mind keep thoughts of transplant away. I know that in the future I will either get a transplant or I won't. I just think that unless something changes for the worse I am going to focus on trying to maintain 43% instead of focusing on getting a transplant.

My doctor suggests waiting untill I get a little closer to 30%, then get evaluated but don't get listed until I can say to myself would it be worth dying to get the chance of a new life. So until I worsen and get to this point, I am going to focus on living and try not to think about transplant at least while I am in the 40's anyway. This is a very personal decision, so just do what is best for you and enjoy the here and now! Ginger

Gingerloveslife · Apr 20, 2009

Hey Nuttzzy!

My fev1 is exactly where yours is and my feelings about transplant are exactly what yours are. Talk of transplant scares the living daylights out of me.

What I have found to help is reading other peoples accounts of it. No, usually they are not perfect stories. Just about everyone encounters unexpected problems which makes transplant that much more scarier. The thing is there are so many people who are so ecstatic that they had a tranplant. Their enthusiasm then makes me think that okay, things may go wrong but what if I did get through it and got to enjoy the new lungs. Would the thought of being able to run and play with my little boy outweigh the fear of transplant? Like you, the fear just makes this answer so unclear. I just don't know.

My response to all this fear of transplant is to get busy with my health. I read the cf forums daily to see what is helping other people. Because of this, I was just started on singulair, have focused on staying away from all irritants, have ordered fizzy NAC, and have started walking 2 miles a day. Trying to work on my health helps me in my mind keep thoughts of transplant away. I know that in the future I will either get a transplant or I won't. I just think that unless something changes for the worse I am going to focus on trying to maintain 43% instead of focusing on getting a transplant.

My doctor suggests waiting untill I get a little closer to 30%, then get evaluated but don't get listed until I can say to myself would it be worth dying to get the chance of a new life. So until I worsen and get to this point, I am going to focus on living and try not to think about transplant at least while I am in the 40's anyway. This is a very personal decision, so just do what is best for you and enjoy the here and now! Ginger

Gingerloveslife · Apr 20, 2009

Hey Nuttzzy!
 
 My fev1 is exactly where yours is and my feelings about transplant are exactly what yours are. Talk of transplant scares the living daylights out of me.
 
 What I have found to help is reading other peoples accounts of it. No, usually they are not perfect stories. Just about everyone encounters unexpected problems which makes transplant that much more scarier. The thing is there are so many people who are so ecstatic that they had a tranplant. Their enthusiasm then makes me think that okay, things may go wrong but what if I did get through it and got to enjoy the new lungs. Would the thought of being able to run and play with my little boy outweigh the fear of transplant? Like you, the fear just makes this answer so unclear. I just don't know.
 
 My response to all this fear of transplant is to get busy with my health. I read the cf forums daily to see what is helping other people. Because of this, I was just started on singulair, have focused on staying away from all irritants, have ordered fizzy NAC, and have started walking 2 miles a day. Trying to work on my health helps me in my mind keep thoughts of transplant away. I know that in the future I will either get a transplant or I won't. I just think that unless something changes for the worse I am going to focus on trying to maintain 43% instead of focusing on getting a transplant.
 
 My doctor suggests waiting untill I get a little closer to 30%, then get evaluated but don't get listed until I can say to myself would it be worth dying to get the chance of a new life. So until I worsen and get to this point, I am going to focus on living and try not to think about transplant at least while I am in the 40's anyway. This is a very personal decision, so just do what is best for you and enjoy the here and now! Ginger

Diane · Apr 20, 2009

I can certainly understand your uneasiness about having a transplant. I myself have said for years i would not get one. I dont currently know what my fev1 is right now but before January and my 3 embolizations i was in the same area as you (low 40's).
The way i see it, (and i know this sounds crazy) having a transplant would force me to be dieing twice. I mean transplant or no transplant you are still going to one day die. I only wish to go thru the dieing process once. If i have a transplant i will have to wait till i am basically dieing from the disease, Since there are no guarantees you will even get the transplant in time, you very well may die. Who wants to go thru that process just to one day be right back in that horrible position....even if it is years later, its still the worst position to be in. Mentally i think i can only face that position once. I've been thru a lot lately and i was in a position where i thought "this is it, Im done" and believe me i dont want to go thru that more than once when it really is the end.
I've heard of people having very successful transplants and i am thrilled for them, i think they are so brave. Then i hear of some who have transplants and never make it out of the hospital, and then theres one who had the transplant only to be killed 5 months later by something else( that was very sad). It truely is a personal decision. You do not have to do it for anyone but you. If you decide against a transplant, it does not mean hope is lost. Some people have fev1's in the 20's for years and function pretty decent. Who knows in a few years what treatment may come about that will help those of us with lower pft's. I am pretty much counting on that. We wont be cured (to me there will never be a cure) but we may be able to save what we have.
Transplant is a hard decision to make whether you decide to go for it or against it. It sounds like you are doing the right thing by giving it a lot of thought and not making any rash decisions.

Diane · Apr 20, 2009

I can certainly understand your uneasiness about having a transplant. I myself have said for years i would not get one. I dont currently know what my fev1 is right now but before January and my 3 embolizations i was in the same area as you (low 40's).
The way i see it, (and i know this sounds crazy) having a transplant would force me to be dieing twice. I mean transplant or no transplant you are still going to one day die. I only wish to go thru the dieing process once. If i have a transplant i will have to wait till i am basically dieing from the disease, Since there are no guarantees you will even get the transplant in time, you very well may die. Who wants to go thru that process just to one day be right back in that horrible position....even if it is years later, its still the worst position to be in. Mentally i think i can only face that position once. I've been thru a lot lately and i was in a position where i thought "this is it, Im done" and believe me i dont want to go thru that more than once when it really is the end.
I've heard of people having very successful transplants and i am thrilled for them, i think they are so brave. Then i hear of some who have transplants and never make it out of the hospital, and then theres one who had the transplant only to be killed 5 months later by something else( that was very sad). It truely is a personal decision. You do not have to do it for anyone but you. If you decide against a transplant, it does not mean hope is lost. Some people have fev1's in the 20's for years and function pretty decent. Who knows in a few years what treatment may come about that will help those of us with lower pft's. I am pretty much counting on that. We wont be cured (to me there will never be a cure) but we may be able to save what we have.
Transplant is a hard decision to make whether you decide to go for it or against it. It sounds like you are doing the right thing by giving it a lot of thought and not making any rash decisions.

Diane · Apr 20, 2009

I can certainly understand your uneasiness about having a transplant. I myself have said for years i would not get one. I dont currently know what my fev1 is right now but before January and my 3 embolizations i was in the same area as you (low 40's).
The way i see it, (and i know this sounds crazy) having a transplant would force me to be dieing twice. I mean transplant or no transplant you are still going to one day die. I only wish to go thru the dieing process once. If i have a transplant i will have to wait till i am basically dieing from the disease, Since there are no guarantees you will even get the transplant in time, you very well may die. Who wants to go thru that process just to one day be right back in that horrible position....even if it is years later, its still the worst position to be in. Mentally i think i can only face that position once. I've been thru a lot lately and i was in a position where i thought "this is it, Im done" and believe me i dont want to go thru that more than once when it really is the end.
I've heard of people having very successful transplants and i am thrilled for them, i think they are so brave. Then i hear of some who have transplants and never make it out of the hospital, and then theres one who had the transplant only to be killed 5 months later by something else( that was very sad). It truely is a personal decision. You do not have to do it for anyone but you. If you decide against a transplant, it does not mean hope is lost. Some people have fev1's in the 20's for years and function pretty decent. Who knows in a few years what treatment may come about that will help those of us with lower pft's. I am pretty much counting on that. We wont be cured (to me there will never be a cure) but we may be able to save what we have.
Transplant is a hard decision to make whether you decide to go for it or against it. It sounds like you are doing the right thing by giving it a lot of thought and not making any rash decisions.

Diane · Apr 20, 2009

I can certainly understand your uneasiness about having a transplant. I myself have said for years i would not get one. I dont currently know what my fev1 is right now but before January and my 3 embolizations i was in the same area as you (low 40's).
The way i see it, (and i know this sounds crazy) having a transplant would force me to be dieing twice. I mean transplant or no transplant you are still going to one day die. I only wish to go thru the dieing process once. If i have a transplant i will have to wait till i am basically dieing from the disease, Since there are no guarantees you will even get the transplant in time, you very well may die. Who wants to go thru that process just to one day be right back in that horrible position....even if it is years later, its still the worst position to be in. Mentally i think i can only face that position once. I've been thru a lot lately and i was in a position where i thought "this is it, Im done" and believe me i dont want to go thru that more than once when it really is the end.
I've heard of people having very successful transplants and i am thrilled for them, i think they are so brave. Then i hear of some who have transplants and never make it out of the hospital, and then theres one who had the transplant only to be killed 5 months later by something else( that was very sad). It truely is a personal decision. You do not have to do it for anyone but you. If you decide against a transplant, it does not mean hope is lost. Some people have fev1's in the 20's for years and function pretty decent. Who knows in a few years what treatment may come about that will help those of us with lower pft's. I am pretty much counting on that. We wont be cured (to me there will never be a cure) but we may be able to save what we have.
Transplant is a hard decision to make whether you decide to go for it or against it. It sounds like you are doing the right thing by giving it a lot of thought and not making any rash decisions.

Diane · Apr 20, 2009

I can certainly understand your uneasiness about having a transplant. I myself have said for years i would not get one. I dont currently know what my fev1 is right now but before January and my 3 embolizations i was in the same area as you (low 40's).
 The way i see it, (and i know this sounds crazy) having a transplant would force me to be dieing twice. I mean transplant or no transplant you are still going to one day die. I only wish to go thru the dieing process once. If i have a transplant i will have to wait till i am basically dieing from the disease, Since there are no guarantees you will even get the transplant in time, you very well may die. Who wants to go thru that process just to one day be right back in that horrible position....even if it is years later, its still the worst position to be in. Mentally i think i can only face that position once. I've been thru a lot lately and i was in a position where i thought "this is it, Im done" and believe me i dont want to go thru that more than once when it really is the end.
 I've heard of people having very successful transplants and i am thrilled for them, i think they are so brave. Then i hear of some who have transplants and never make it out of the hospital, and then theres one who had the transplant only to be killed 5 months later by something else( that was very sad). It truely is a personal decision. You do not have to do it for anyone but you. If you decide against a transplant, it does not mean hope is lost. Some people have fev1's in the 20's for years and function pretty decent. Who knows in a few years what treatment may come about that will help those of us with lower pft's. I am pretty much counting on that. We wont be cured (to me there will never be a cure) but we may be able to save what we have.
 Transplant is a hard decision to make whether you decide to go for it or against it. It sounds like you are doing the right thing by giving it a lot of thought and not making any rash decisions.

vmhoward · Apr 20, 2009

Ok,

So being a parent I can only give you my observations etc.. on This topic. But, that being said, when making the decision to list my son (8 yrs old). We weighed alot of things. We had the same thought as you, "If God says its time, then it is time". But looking into my son's beautiful brown eyes, I wasnt ready to accept death.

We ultimately asked him. Many people said that we shouldnt ask him because he is too young, but it was his body, his choice. And if he had stated that he was ready to go then we were prepared to accept that as well.

He was scared, and we explained everything to him, from where the lungs come from, to what will happen if he doesnt get the tx.

He made the decision to be listed along with us. the hardest part as a parent was the waiting and wondering. Not knowing what would happen the next day.

When he was listed he was below 30% on 24 hour O2, and by the time he had his tx closer to the teens.

When Garran went into surgery, he knew full well that he might not make it out of surgery, and he was ready to die. This is what he told us. He wasnt upset, he was ready either way. And watching this young brave boy smile and laugh minutes before going into the OR, I saw strength at that moment.

Ultimately the decision is yours. Not your parents, not your family or friends. And they will understand what ever decision you make is for you. Tx is not easy, and something you have to do for YOU and not someone else.

And no Tx isnt a cure, but at this point, I would have made the same choice, and I know Garran feels the same.

The last 2 months he has lived a 100 times better quality of life that any of his 7 years prior.

vmhoward · Apr 20, 2009

Ok,

So being a parent I can only give you my observations etc.. on This topic. But, that being said, when making the decision to list my son (8 yrs old). We weighed alot of things. We had the same thought as you, "If God says its time, then it is time". But looking into my son's beautiful brown eyes, I wasnt ready to accept death.

We ultimately asked him. Many people said that we shouldnt ask him because he is too young, but it was his body, his choice. And if he had stated that he was ready to go then we were prepared to accept that as well.

He was scared, and we explained everything to him, from where the lungs come from, to what will happen if he doesnt get the tx.

He made the decision to be listed along with us. the hardest part as a parent was the waiting and wondering. Not knowing what would happen the next day.

When he was listed he was below 30% on 24 hour O2, and by the time he had his tx closer to the teens.

When Garran went into surgery, he knew full well that he might not make it out of surgery, and he was ready to die. This is what he told us. He wasnt upset, he was ready either way. And watching this young brave boy smile and laugh minutes before going into the OR, I saw strength at that moment.

Ultimately the decision is yours. Not your parents, not your family or friends. And they will understand what ever decision you make is for you. Tx is not easy, and something you have to do for YOU and not someone else.

And no Tx isnt a cure, but at this point, I would have made the same choice, and I know Garran feels the same.

The last 2 months he has lived a 100 times better quality of life that any of his 7 years prior.

vmhoward · Apr 20, 2009

Ok,

So being a parent I can only give you my observations etc.. on This topic. But, that being said, when making the decision to list my son (8 yrs old). We weighed alot of things. We had the same thought as you, "If God says its time, then it is time". But looking into my son's beautiful brown eyes, I wasnt ready to accept death.

We ultimately asked him. Many people said that we shouldnt ask him because he is too young, but it was his body, his choice. And if he had stated that he was ready to go then we were prepared to accept that as well.

He was scared, and we explained everything to him, from where the lungs come from, to what will happen if he doesnt get the tx.

He made the decision to be listed along with us. the hardest part as a parent was the waiting and wondering. Not knowing what would happen the next day.

When he was listed he was below 30% on 24 hour O2, and by the time he had his tx closer to the teens.

When Garran went into surgery, he knew full well that he might not make it out of surgery, and he was ready to die. This is what he told us. He wasnt upset, he was ready either way. And watching this young brave boy smile and laugh minutes before going into the OR, I saw strength at that moment.

Ultimately the decision is yours. Not your parents, not your family or friends. And they will understand what ever decision you make is for you. Tx is not easy, and something you have to do for YOU and not someone else.

And no Tx isnt a cure, but at this point, I would have made the same choice, and I know Garran feels the same.

The last 2 months he has lived a 100 times better quality of life that any of his 7 years prior.

vmhoward · Apr 20, 2009

Ok,

So being a parent I can only give you my observations etc.. on This topic. But, that being said, when making the decision to list my son (8 yrs old). We weighed alot of things. We had the same thought as you, "If God says its time, then it is time". But looking into my son's beautiful brown eyes, I wasnt ready to accept death.

We ultimately asked him. Many people said that we shouldnt ask him because he is too young, but it was his body, his choice. And if he had stated that he was ready to go then we were prepared to accept that as well.

He was scared, and we explained everything to him, from where the lungs come from, to what will happen if he doesnt get the tx.

He made the decision to be listed along with us. the hardest part as a parent was the waiting and wondering. Not knowing what would happen the next day.

When he was listed he was below 30% on 24 hour O2, and by the time he had his tx closer to the teens.

When Garran went into surgery, he knew full well that he might not make it out of surgery, and he was ready to die. This is what he told us. He wasnt upset, he was ready either way. And watching this young brave boy smile and laugh minutes before going into the OR, I saw strength at that moment.

Ultimately the decision is yours. Not your parents, not your family or friends. And they will understand what ever decision you make is for you. Tx is not easy, and something you have to do for YOU and not someone else.

And no Tx isnt a cure, but at this point, I would have made the same choice, and I know Garran feels the same.

The last 2 months he has lived a 100 times better quality of life that any of his 7 years prior.

vmhoward · Apr 20, 2009

Ok,
 
 So being a parent I can only give you my observations etc.. on This topic. But, that being said, when making the decision to list my son (8 yrs old). We weighed alot of things. We had the same thought as you, "If God says its time, then it is time". But looking into my son's beautiful brown eyes, I wasnt ready to accept death.
 
 We ultimately asked him. Many people said that we shouldnt ask him because he is too young, but it was his body, his choice. And if he had stated that he was ready to go then we were prepared to accept that as well.
 
 He was scared, and we explained everything to him, from where the lungs come from, to what will happen if he doesnt get the tx.
 
 He made the decision to be listed along with us. the hardest part as a parent was the waiting and wondering. Not knowing what would happen the next day.
 
 When he was listed he was below 30% on 24 hour O2, and by the time he had his tx closer to the teens.
 
 When Garran went into surgery, he knew full well that he might not make it out of surgery, and he was ready to die. This is what he told us. He wasnt upset, he was ready either way. And watching this young brave boy smile and laugh minutes before going into the OR, I saw strength at that moment.
 
 Ultimately the decision is yours. Not your parents, not your family or friends. And they will understand what ever decision you make is for you. Tx is not easy, and something you have to do for YOU and not someone else.
 
 And no Tx isnt a cure, but at this point, I would have made the same choice, and I know Garran feels the same.
 
 The last 2 months he has lived a 100 times better quality of life that any of his 7 years prior.

nuttzzy · Apr 20, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Diane

I can certainly understand your uneasiness about having a transplant. I myself have said for years i would not get one. I dont currently know what my fev1 is right now but before January and my 3 embolizations i was in the same area as you (low 40's).
The way i see it, (and i know this sounds crazy) having a transplant would force me to be dieing twice. I mean transplant or no transplant you are still going to one day die. I only wish to go thru the dieing process once. If i have a transplant i will have to wait till i am basically dieing from the disease, Since there are no guarantees you will even get the transplant in time, you very well may die. Who wants to go thru that process just to one day be right back in that horrible position....even if it is years later, its still the worst position to be in. Mentally i think i can only face that position once. I've been thru a lot lately and i was in a position where i thought "this is it, Im done" and believe me i dont want to go thru that more than once when it really is the end.

I've heard of people having very successful transplants and i am thrilled for them, i think they are so brave. Then i hear of some who have transplants and never make it out of the hospital, and then theres one who had the transplant only to be killed 5 months later by something else( that was very sad). It truely is a personal decision. You do not have to do it for anyone but you. If you decide against a transplant, it does not mean hope is lost. Some people have fev1's in the 20's for years and function pretty decent. Who knows in a few years what treatment may come about that will help those of us with lower pft's. I am pretty much counting on that. We wont be cured (to me there will never be a cure) but we may be able to save what we have.

Transplant is a hard decision to make whether you decide to go for it or against it. It sounds like you are doing the right thing by giving it a lot of thought and not making any rash decisions.</end quote></div>

This is the ONLY thought on my mind I didn't put it in the first post but it is recurring... I've NEVER had a procedure go right without misshap. G tube took a Whole year to get strightend out. dont have a port, dont want one. i guess im a naturalist but i dont like the procedures PERIOD. I Currently Dont have a GF/Wife or a Kid, and Few Friends cause most of my "friends are heavy smokers and drinkers and went on to other things. that i couldnt/ and choose not to follow. SO... this is a big thought on my mind also. Im not Suicidal but its not much to live for you know? ( did that sound greedy?)

nuttzzy · Apr 20, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Diane

I can certainly understand your uneasiness about having a transplant. I myself have said for years i would not get one. I dont currently know what my fev1 is right now but before January and my 3 embolizations i was in the same area as you (low 40's).
The way i see it, (and i know this sounds crazy) having a transplant would force me to be dieing twice. I mean transplant or no transplant you are still going to one day die. I only wish to go thru the dieing process once. If i have a transplant i will have to wait till i am basically dieing from the disease, Since there are no guarantees you will even get the transplant in time, you very well may die. Who wants to go thru that process just to one day be right back in that horrible position....even if it is years later, its still the worst position to be in. Mentally i think i can only face that position once. I've been thru a lot lately and i was in a position where i thought "this is it, Im done" and believe me i dont want to go thru that more than once when it really is the end.

I've heard of people having very successful transplants and i am thrilled for them, i think they are so brave. Then i hear of some who have transplants and never make it out of the hospital, and then theres one who had the transplant only to be killed 5 months later by something else( that was very sad). It truely is a personal decision. You do not have to do it for anyone but you. If you decide against a transplant, it does not mean hope is lost. Some people have fev1's in the 20's for years and function pretty decent. Who knows in a few years what treatment may come about that will help those of us with lower pft's. I am pretty much counting on that. We wont be cured (to me there will never be a cure) but we may be able to save what we have.

Transplant is a hard decision to make whether you decide to go for it or against it. It sounds like you are doing the right thing by giving it a lot of thought and not making any rash decisions.</end quote></div>

This is the ONLY thought on my mind I didn't put it in the first post but it is recurring... I've NEVER had a procedure go right without misshap. G tube took a Whole year to get strightend out. dont have a port, dont want one. i guess im a naturalist but i dont like the procedures PERIOD. I Currently Dont have a GF/Wife or a Kid, and Few Friends cause most of my "friends are heavy smokers and drinkers and went on to other things. that i couldnt/ and choose not to follow. SO... this is a big thought on my mind also. Im not Suicidal but its not much to live for you know? ( did that sound greedy?)

nuttzzy · Apr 20, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Diane

I can certainly understand your uneasiness about having a transplant. I myself have said for years i would not get one. I dont currently know what my fev1 is right now but before January and my 3 embolizations i was in the same area as you (low 40's).
The way i see it, (and i know this sounds crazy) having a transplant would force me to be dieing twice. I mean transplant or no transplant you are still going to one day die. I only wish to go thru the dieing process once. If i have a transplant i will have to wait till i am basically dieing from the disease, Since there are no guarantees you will even get the transplant in time, you very well may die. Who wants to go thru that process just to one day be right back in that horrible position....even if it is years later, its still the worst position to be in. Mentally i think i can only face that position once. I've been thru a lot lately and i was in a position where i thought "this is it, Im done" and believe me i dont want to go thru that more than once when it really is the end.

I've heard of people having very successful transplants and i am thrilled for them, i think they are so brave. Then i hear of some who have transplants and never make it out of the hospital, and then theres one who had the transplant only to be killed 5 months later by something else( that was very sad). It truely is a personal decision. You do not have to do it for anyone but you. If you decide against a transplant, it does not mean hope is lost. Some people have fev1's in the 20's for years and function pretty decent. Who knows in a few years what treatment may come about that will help those of us with lower pft's. I am pretty much counting on that. We wont be cured (to me there will never be a cure) but we may be able to save what we have.

Transplant is a hard decision to make whether you decide to go for it or against it. It sounds like you are doing the right thing by giving it a lot of thought and not making any rash decisions.</end quote></div>

This is the ONLY thought on my mind I didn't put it in the first post but it is recurring... I've NEVER had a procedure go right without misshap. G tube took a Whole year to get strightend out. dont have a port, dont want one. i guess im a naturalist but i dont like the procedures PERIOD. I Currently Dont have a GF/Wife or a Kid, and Few Friends cause most of my "friends are heavy smokers and drinkers and went on to other things. that i couldnt/ and choose not to follow. SO... this is a big thought on my mind also. Im not Suicidal but its not much to live for you know? ( did that sound greedy?)

nuttzzy · Apr 20, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Diane

I can certainly understand your uneasiness about having a transplant. I myself have said for years i would not get one. I dont currently know what my fev1 is right now but before January and my 3 embolizations i was in the same area as you (low 40's).
The way i see it, (and i know this sounds crazy) having a transplant would force me to be dieing twice. I mean transplant or no transplant you are still going to one day die. I only wish to go thru the dieing process once. If i have a transplant i will have to wait till i am basically dieing from the disease, Since there are no guarantees you will even get the transplant in time, you very well may die. Who wants to go thru that process just to one day be right back in that horrible position....even if it is years later, its still the worst position to be in. Mentally i think i can only face that position once. I've been thru a lot lately and i was in a position where i thought "this is it, Im done" and believe me i dont want to go thru that more than once when it really is the end.

I've heard of people having very successful transplants and i am thrilled for them, i think they are so brave. Then i hear of some who have transplants and never make it out of the hospital, and then theres one who had the transplant only to be killed 5 months later by something else( that was very sad). It truely is a personal decision. You do not have to do it for anyone but you. If you decide against a transplant, it does not mean hope is lost. Some people have fev1's in the 20's for years and function pretty decent. Who knows in a few years what treatment may come about that will help those of us with lower pft's. I am pretty much counting on that. We wont be cured (to me there will never be a cure) but we may be able to save what we have.

Transplant is a hard decision to make whether you decide to go for it or against it. It sounds like you are doing the right thing by giving it a lot of thought and not making any rash decisions.</end quote>

This is the ONLY thought on my mind I didn't put it in the first post but it is recurring... I've NEVER had a procedure go right without misshap. G tube took a Whole year to get strightend out. dont have a port, dont want one. i guess im a naturalist but i dont like the procedures PERIOD. I Currently Dont have a GF/Wife or a Kid, and Few Friends cause most of my "friends are heavy smokers and drinkers and went on to other things. that i couldnt/ and choose not to follow. SO... this is a big thought on my mind also. Im not Suicidal but its not much to live for you know? ( did that sound greedy?)

nuttzzy · Apr 20, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: Diane
 
 I can certainly understand your uneasiness about having a transplant. I myself have said for years i would not get one. I dont currently know what my fev1 is right now but before January and my 3 embolizations i was in the same area as you (low 40's).
 The way i see it, (and i know this sounds crazy) having a transplant would force me to be dieing twice. I mean transplant or no transplant you are still going to one day die. I only wish to go thru the dieing process once. If i have a transplant i will have to wait till i am basically dieing from the disease, Since there are no guarantees you will even get the transplant in time, you very well may die. Who wants to go thru that process just to one day be right back in that horrible position....even if it is years later, its still the worst position to be in. Mentally i think i can only face that position once. I've been thru a lot lately and i was in a position where i thought "this is it, Im done" and believe me i dont want to go thru that more than once when it really is the end.
 
 I've heard of people having very successful transplants and i am thrilled for them, i think they are so brave. Then i hear of some who have transplants and never make it out of the hospital, and then theres one who had the transplant only to be killed 5 months later by something else( that was very sad). It truely is a personal decision. You do not have to do it for anyone but you. If you decide against a transplant, it does not mean hope is lost. Some people have fev1's in the 20's for years and function pretty decent. Who knows in a few years what treatment may come about that will help those of us with lower pft's. I am pretty much counting on that. We wont be cured (to me there will never be a cure) but we may be able to save what we have.
 
 Transplant is a hard decision to make whether you decide to go for it or against it. It sounds like you are doing the right thing by giving it a lot of thought and not making any rash decisions.</end quote>
 
 
 This is the ONLY thought on my mind I didn't put it in the first post but it is recurring... I've NEVER had a procedure go right without misshap. G tube took a Whole year to get strightend out. dont have a port, dont want one. i guess im a naturalist but i dont like the procedures PERIOD. I Currently Dont have a GF/Wife or a Kid, and Few Friends cause most of my "friends are heavy smokers and drinkers and went on to other things. that i couldnt/ and choose not to follow. SO... this is a big thought on my mind also. Im not Suicidal but its not much to live for you know? ( did that sound greedy?)

needs advice with a transplant....

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