Question For Those Post-Transplant

[Lilith]

Hello, again, everyone. First, I want to thank everyone for their good wishes and support. I was very surprised by that.

My questions here basically go to those that are either on the transplant list or who have already been transplanted. I've only been on the list for about a month, and I find my spirits already slipping. My doctor seemed very confident that I would have new lungs by the end of my last hospital stay, or at the longest, by the end of the month. Yet here I sit, back in my apartment, strapped to O2, still waiting by the phone.

I have never felt so hopeless. The first time I talked to my doctor about getting a transplant, he told me that, as it stands, I have six months left. Am I going to get it in time? Should I be getting my hopes up at all? I'm 5' 2". Is it difficult to find healthy lungs of that size? While I was hospitalized, a pair came available. They would have gone to me, except that they were too big.

My doctor seems to have all this optimism, but I can't tell if he's just blowing sunshine up my butt so I don't get depressed or if he's telling me the truth. Then there's the fact that I may not survive the surgery, that I could reject, etc.

I'm at a loss right now with what to believe and where I should realistically set my sights. So I'm asking those with experience and those who are sharing this hard time with me. How long were you waiting on the list and what did you do to keep yourself from losing hope? Did you distract yourself and force yourself not to think about it, or did you somehow come to terms with things? And did you see this as a new beginning, or did the thought cross your mind that this is the final frontier, that you are coming into the last few years of your life?

Any advice would be DEEPLY appreciated. Take care.

 

[Lilith]

Hello, again, everyone. First, I want to thank everyone for their good wishes and support. I was very surprised by that.

My questions here basically go to those that are either on the transplant list or who have already been transplanted. I've only been on the list for about a month, and I find my spirits already slipping. My doctor seemed very confident that I would have new lungs by the end of my last hospital stay, or at the longest, by the end of the month. Yet here I sit, back in my apartment, strapped to O2, still waiting by the phone.

I have never felt so hopeless. The first time I talked to my doctor about getting a transplant, he told me that, as it stands, I have six months left. Am I going to get it in time? Should I be getting my hopes up at all? I'm 5' 2". Is it difficult to find healthy lungs of that size? While I was hospitalized, a pair came available. They would have gone to me, except that they were too big.

My doctor seems to have all this optimism, but I can't tell if he's just blowing sunshine up my butt so I don't get depressed or if he's telling me the truth. Then there's the fact that I may not survive the surgery, that I could reject, etc.

I'm at a loss right now with what to believe and where I should realistically set my sights. So I'm asking those with experience and those who are sharing this hard time with me. How long were you waiting on the list and what did you do to keep yourself from losing hope? Did you distract yourself and force yourself not to think about it, or did you somehow come to terms with things? And did you see this as a new beginning, or did the thought cross your mind that this is the final frontier, that you are coming into the last few years of your life?

Any advice would be DEEPLY appreciated. Take care.

 

[Lilith]

Hello, again, everyone. First, I want to thank everyone for their good wishes and support. I was very surprised by that.

My questions here basically go to those that are either on the transplant list or who have already been transplanted. I've only been on the list for about a month, and I find my spirits already slipping. My doctor seemed very confident that I would have new lungs by the end of my last hospital stay, or at the longest, by the end of the month. Yet here I sit, back in my apartment, strapped to O2, still waiting by the phone.

I have never felt so hopeless. The first time I talked to my doctor about getting a transplant, he told me that, as it stands, I have six months left. Am I going to get it in time? Should I be getting my hopes up at all? I'm 5' 2". Is it difficult to find healthy lungs of that size? While I was hospitalized, a pair came available. They would have gone to me, except that they were too big.

My doctor seems to have all this optimism, but I can't tell if he's just blowing sunshine up my butt so I don't get depressed or if he's telling me the truth. Then there's the fact that I may not survive the surgery, that I could reject, etc.

I'm at a loss right now with what to believe and where I should realistically set my sights. So I'm asking those with experience and those who are sharing this hard time with me. How long were you waiting on the list and what did you do to keep yourself from losing hope? Did you distract yourself and force yourself not to think about it, or did you somehow come to terms with things? And did you see this as a new beginning, or did the thought cross your mind that this is the final frontier, that you are coming into the last few years of your life?

Any advice would be DEEPLY appreciated. Take care.

 

[Lilith]

Hello, again, everyone. First, I want to thank everyone for their good wishes and support. I was very surprised by that.

My questions here basically go to those that are either on the transplant list or who have already been transplanted. I've only been on the list for about a month, and I find my spirits already slipping. My doctor seemed very confident that I would have new lungs by the end of my last hospital stay, or at the longest, by the end of the month. Yet here I sit, back in my apartment, strapped to O2, still waiting by the phone.

I have never felt so hopeless. The first time I talked to my doctor about getting a transplant, he told me that, as it stands, I have six months left. Am I going to get it in time? Should I be getting my hopes up at all? I'm 5' 2". Is it difficult to find healthy lungs of that size? While I was hospitalized, a pair came available. They would have gone to me, except that they were too big.

My doctor seems to have all this optimism, but I can't tell if he's just blowing sunshine up my butt so I don't get depressed or if he's telling me the truth. Then there's the fact that I may not survive the surgery, that I could reject, etc.

I'm at a loss right now with what to believe and where I should realistically set my sights. So I'm asking those with experience and those who are sharing this hard time with me. How long were you waiting on the list and what did you do to keep yourself from losing hope? Did you distract yourself and force yourself not to think about it, or did you somehow come to terms with things? And did you see this as a new beginning, or did the thought cross your mind that this is the final frontier, that you are coming into the last few years of your life?

Any advice would be DEEPLY appreciated. Take care.

 

[Lilith]

Hello, again, everyone. First, I want to thank everyone for their good wishes and support. I was very surprised by that.

My questions here basically go to those that are either on the transplant list or who have already been transplanted. I've only been on the list for about a month, and I find my spirits already slipping. My doctor seemed very confident that I would have new lungs by the end of my last hospital stay, or at the longest, by the end of the month. Yet here I sit, back in my apartment, strapped to O2, still waiting by the phone.

I have never felt so hopeless. The first time I talked to my doctor about getting a transplant, he told me that, as it stands, I have six months left. Am I going to get it in time? Should I be getting my hopes up at all? I'm 5' 2". Is it difficult to find healthy lungs of that size? While I was hospitalized, a pair came available. They would have gone to me, except that they were too big.

My doctor seems to have all this optimism, but I can't tell if he's just blowing sunshine up my butt so I don't get depressed or if he's telling me the truth. Then there's the fact that I may not survive the surgery, that I could reject, etc.

I'm at a loss right now with what to believe and where I should realistically set my sights. So I'm asking those with experience and those who are sharing this hard time with me. How long were you waiting on the list and what did you do to keep yourself from losing hope? Did you distract yourself and force yourself not to think about it, or did you somehow come to terms with things? And did you see this as a new beginning, or did the thought cross your mind that this is the final frontier, that you are coming into the last few years of your life?

Any advice would be DEEPLY appreciated. Take care.

 

[IG]

that six months to live? Just an estimate by one guy. I've heard of people who have 'less than a year' and after 5 years are still plugging along. I'd take it with a grain of salt. Also i'm 5'1'' and I got lungs.. so it can't be that difficult and I worked my way up the list for my height and size and O- blood type. Remember back then it wasn't on a need basis but a first come first serve. Took about three years but I was far back on the list at that point. So yeah there are people out there that small. Also these docs have dealt with this before so if they believe that yea it's gonna happen soon then yea it might but then again you don't know and neither do they. However they do have experience from dealing with other transplant patients so they might know the situation and circumstances better than you. So I guess what I'm saying is that doctors can be wrong however they do have the experience so you just never know.

As for losing hope? I lived in denial up to transplant time thinking that it was just one more hospitalization and I'd be home soon so I can't tell you how I dealt with waiting because I didn't wait. As for the final years of my life? I'm going on 5 years post tx and have no intention of stopping now. Yeah I could cross the street and get hit by a bus but hey I'm not waiting around for that to happen and i'm certainly not sitting around waiting for the end to come due to lung failure/respiratory failure/whatnot. I'll die when I die however I'm not going out without a fight. And preferably when I'm 80. As for being a new start? A new start to what my life? I can't go back to the beginning but I'm going to continue on with it a little more healthy than what I was before. Yeah I view life a little differently, and yeah i'm probably a little less b*tchy but why change who I am ultimately because I've got a 'new lease on life.' I can't change who I am and if I was that unhappy with myself beforehand that I felt that I needed to change everything about my life then I think I have problems deeper than just lung issues. However I can see making positive changes with your life because you have longer to live (like a healthier diet, more community service because you have the energy nowadays) But that's just me and not everybody views life in the same way that I do. (read that as: if you disagree with my outlook I really don't care you can only live life as how you see fit and nobody can tell you how to do that differently)

 

[IG]

that six months to live? Just an estimate by one guy. I've heard of people who have 'less than a year' and after 5 years are still plugging along. I'd take it with a grain of salt. Also i'm 5'1'' and I got lungs.. so it can't be that difficult and I worked my way up the list for my height and size and O- blood type. Remember back then it wasn't on a need basis but a first come first serve. Took about three years but I was far back on the list at that point. So yeah there are people out there that small. Also these docs have dealt with this before so if they believe that yea it's gonna happen soon then yea it might but then again you don't know and neither do they. However they do have experience from dealing with other transplant patients so they might know the situation and circumstances better than you. So I guess what I'm saying is that doctors can be wrong however they do have the experience so you just never know.

As for losing hope? I lived in denial up to transplant time thinking that it was just one more hospitalization and I'd be home soon so I can't tell you how I dealt with waiting because I didn't wait. As for the final years of my life? I'm going on 5 years post tx and have no intention of stopping now. Yeah I could cross the street and get hit by a bus but hey I'm not waiting around for that to happen and i'm certainly not sitting around waiting for the end to come due to lung failure/respiratory failure/whatnot. I'll die when I die however I'm not going out without a fight. And preferably when I'm 80. As for being a new start? A new start to what my life? I can't go back to the beginning but I'm going to continue on with it a little more healthy than what I was before. Yeah I view life a little differently, and yeah i'm probably a little less b*tchy but why change who I am ultimately because I've got a 'new lease on life.' I can't change who I am and if I was that unhappy with myself beforehand that I felt that I needed to change everything about my life then I think I have problems deeper than just lung issues. However I can see making positive changes with your life because you have longer to live (like a healthier diet, more community service because you have the energy nowadays) But that's just me and not everybody views life in the same way that I do. (read that as: if you disagree with my outlook I really don't care you can only live life as how you see fit and nobody can tell you how to do that differently)

 

[IG]

that six months to live? Just an estimate by one guy. I've heard of people who have 'less than a year' and after 5 years are still plugging along. I'd take it with a grain of salt. Also i'm 5'1'' and I got lungs.. so it can't be that difficult and I worked my way up the list for my height and size and O- blood type. Remember back then it wasn't on a need basis but a first come first serve. Took about three years but I was far back on the list at that point. So yeah there are people out there that small. Also these docs have dealt with this before so if they believe that yea it's gonna happen soon then yea it might but then again you don't know and neither do they. However they do have experience from dealing with other transplant patients so they might know the situation and circumstances better than you. So I guess what I'm saying is that doctors can be wrong however they do have the experience so you just never know.

As for losing hope? I lived in denial up to transplant time thinking that it was just one more hospitalization and I'd be home soon so I can't tell you how I dealt with waiting because I didn't wait. As for the final years of my life? I'm going on 5 years post tx and have no intention of stopping now. Yeah I could cross the street and get hit by a bus but hey I'm not waiting around for that to happen and i'm certainly not sitting around waiting for the end to come due to lung failure/respiratory failure/whatnot. I'll die when I die however I'm not going out without a fight. And preferably when I'm 80. As for being a new start? A new start to what my life? I can't go back to the beginning but I'm going to continue on with it a little more healthy than what I was before. Yeah I view life a little differently, and yeah i'm probably a little less b*tchy but why change who I am ultimately because I've got a 'new lease on life.' I can't change who I am and if I was that unhappy with myself beforehand that I felt that I needed to change everything about my life then I think I have problems deeper than just lung issues. However I can see making positive changes with your life because you have longer to live (like a healthier diet, more community service because you have the energy nowadays) But that's just me and not everybody views life in the same way that I do. (read that as: if you disagree with my outlook I really don't care you can only live life as how you see fit and nobody can tell you how to do that differently)

 

[IG]

that six months to live? Just an estimate by one guy. I've heard of people who have 'less than a year' and after 5 years are still plugging along. I'd take it with a grain of salt. Also i'm 5'1'' and I got lungs.. so it can't be that difficult and I worked my way up the list for my height and size and O- blood type. Remember back then it wasn't on a need basis but a first come first serve. Took about three years but I was far back on the list at that point. So yeah there are people out there that small. Also these docs have dealt with this before so if they believe that yea it's gonna happen soon then yea it might but then again you don't know and neither do they. However they do have experience from dealing with other transplant patients so they might know the situation and circumstances better than you. So I guess what I'm saying is that doctors can be wrong however they do have the experience so you just never know.

As for losing hope? I lived in denial up to transplant time thinking that it was just one more hospitalization and I'd be home soon so I can't tell you how I dealt with waiting because I didn't wait. As for the final years of my life? I'm going on 5 years post tx and have no intention of stopping now. Yeah I could cross the street and get hit by a bus but hey I'm not waiting around for that to happen and i'm certainly not sitting around waiting for the end to come due to lung failure/respiratory failure/whatnot. I'll die when I die however I'm not going out without a fight. And preferably when I'm 80. As for being a new start? A new start to what my life? I can't go back to the beginning but I'm going to continue on with it a little more healthy than what I was before. Yeah I view life a little differently, and yeah i'm probably a little less b*tchy but why change who I am ultimately because I've got a 'new lease on life.' I can't change who I am and if I was that unhappy with myself beforehand that I felt that I needed to change everything about my life then I think I have problems deeper than just lung issues. However I can see making positive changes with your life because you have longer to live (like a healthier diet, more community service because you have the energy nowadays) But that's just me and not everybody views life in the same way that I do. (read that as: if you disagree with my outlook I really don't care you can only live life as how you see fit and nobody can tell you how to do that differently)

 

[IG]

that six months to live? Just an estimate by one guy. I've heard of people who have 'less than a year' and after 5 years are still plugging along. I'd take it with a grain of salt. Also i'm 5'1'' and I got lungs.. so it can't be that difficult and I worked my way up the list for my height and size and O- blood type. Remember back then it wasn't on a need basis but a first come first serve. Took about three years but I was far back on the list at that point. So yeah there are people out there that small. Also these docs have dealt with this before so if they believe that yea it's gonna happen soon then yea it might but then again you don't know and neither do they. However they do have experience from dealing with other transplant patients so they might know the situation and circumstances better than you. So I guess what I'm saying is that doctors can be wrong however they do have the experience so you just never know.

As for losing hope? I lived in denial up to transplant time thinking that it was just one more hospitalization and I'd be home soon so I can't tell you how I dealt with waiting because I didn't wait. As for the final years of my life? I'm going on 5 years post tx and have no intention of stopping now. Yeah I could cross the street and get hit by a bus but hey I'm not waiting around for that to happen and i'm certainly not sitting around waiting for the end to come due to lung failure/respiratory failure/whatnot. I'll die when I die however I'm not going out without a fight. And preferably when I'm 80. As for being a new start? A new start to what my life? I can't go back to the beginning but I'm going to continue on with it a little more healthy than what I was before. Yeah I view life a little differently, and yeah i'm probably a little less b*tchy but why change who I am ultimately because I've got a 'new lease on life.' I can't change who I am and if I was that unhappy with myself beforehand that I felt that I needed to change everything about my life then I think I have problems deeper than just lung issues. However I can see making positive changes with your life because you have longer to live (like a healthier diet, more community service because you have the energy nowadays) But that's just me and not everybody views life in the same way that I do. (read that as: if you disagree with my outlook I really don't care you can only live life as how you see fit and nobody can tell you how to do that differently)

 

[Emily65Roses]

I'm no use here. I just wanted you to know that my thoughts are with you. I'll be sending some hope and some smartass thoughts to help pass the time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0">

 

[Emily65Roses]

I'm no use here. I just wanted you to know that my thoughts are with you. I'll be sending some hope and some smartass thoughts to help pass the time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0">

 

[Emily65Roses]

I'm no use here. I just wanted you to know that my thoughts are with you. I'll be sending some hope and some smartass thoughts to help pass the time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0">

 

[Emily65Roses]

I'm no use here. I just wanted you to know that my thoughts are with you. I'll be sending some hope and some smartass thoughts to help pass the time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0">

 

[Emily65Roses]

I'm no use here. I just wanted you to know that my thoughts are with you. I'll be sending some hope and some smartass thoughts to help pass the time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/heart.gif" border="0">

 

[summer732]

Don't count yourself out because you are small! I'm 4'11", with a rare blood type, CMV Negative, please the list against me goes on and I managed to get transplanted. So yes yes yes it is possible.

Stay positive. I can honestly say that yes, I was probably in denial and did everything I could to distract myself from what is going on! My friends came to visit me in New Orleans (I relocated from Jersey) so that was a distraction. I did ask a lot of transplant questions, read a lot of books, watched a lot of movies, and did so many paint by numbers that I was just begging my family to take them once i was finished!

The thought that went through my head, was hell i'm going to have fun during this wait! If this is the last however long of my life that I have left i want to go out on top! So looking back, it was a very difficult and trying time, but there were great memories and a lot of laughs. If it would have went the other way (and believe me I'm so happy it didn't and it worked out how it did) I would have said, well I laughed a lot the last few months and that's all that matters.

 

[summer732]

Don't count yourself out because you are small! I'm 4'11", with a rare blood type, CMV Negative, please the list against me goes on and I managed to get transplanted. So yes yes yes it is possible.

Stay positive. I can honestly say that yes, I was probably in denial and did everything I could to distract myself from what is going on! My friends came to visit me in New Orleans (I relocated from Jersey) so that was a distraction. I did ask a lot of transplant questions, read a lot of books, watched a lot of movies, and did so many paint by numbers that I was just begging my family to take them once i was finished!

The thought that went through my head, was hell i'm going to have fun during this wait! If this is the last however long of my life that I have left i want to go out on top! So looking back, it was a very difficult and trying time, but there were great memories and a lot of laughs. If it would have went the other way (and believe me I'm so happy it didn't and it worked out how it did) I would have said, well I laughed a lot the last few months and that's all that matters.

 

[summer732]

Don't count yourself out because you are small! I'm 4'11", with a rare blood type, CMV Negative, please the list against me goes on and I managed to get transplanted. So yes yes yes it is possible.

Stay positive. I can honestly say that yes, I was probably in denial and did everything I could to distract myself from what is going on! My friends came to visit me in New Orleans (I relocated from Jersey) so that was a distraction. I did ask a lot of transplant questions, read a lot of books, watched a lot of movies, and did so many paint by numbers that I was just begging my family to take them once i was finished!

The thought that went through my head, was hell i'm going to have fun during this wait! If this is the last however long of my life that I have left i want to go out on top! So looking back, it was a very difficult and trying time, but there were great memories and a lot of laughs. If it would have went the other way (and believe me I'm so happy it didn't and it worked out how it did) I would have said, well I laughed a lot the last few months and that's all that matters.

 

[summer732]

Don't count yourself out because you are small! I'm 4'11", with a rare blood type, CMV Negative, please the list against me goes on and I managed to get transplanted. So yes yes yes it is possible.

Stay positive. I can honestly say that yes, I was probably in denial and did everything I could to distract myself from what is going on! My friends came to visit me in New Orleans (I relocated from Jersey) so that was a distraction. I did ask a lot of transplant questions, read a lot of books, watched a lot of movies, and did so many paint by numbers that I was just begging my family to take them once i was finished!

The thought that went through my head, was hell i'm going to have fun during this wait! If this is the last however long of my life that I have left i want to go out on top! So looking back, it was a very difficult and trying time, but there were great memories and a lot of laughs. If it would have went the other way (and believe me I'm so happy it didn't and it worked out how it did) I would have said, well I laughed a lot the last few months and that's all that matters.

 

[summer732]

Don't count yourself out because you are small! I'm 4'11", with a rare blood type, CMV Negative, please the list against me goes on and I managed to get transplanted. So yes yes yes it is possible.

Stay positive. I can honestly say that yes, I was probably in denial and did everything I could to distract myself from what is going on! My friends came to visit me in New Orleans (I relocated from Jersey) so that was a distraction. I did ask a lot of transplant questions, read a lot of books, watched a lot of movies, and did so many paint by numbers that I was just begging my family to take them once i was finished!

The thought that went through my head, was hell i'm going to have fun during this wait! If this is the last however long of my life that I have left i want to go out on top! So looking back, it was a very difficult and trying time, but there were great memories and a lot of laughs. If it would have went the other way (and believe me I'm so happy it didn't and it worked out how it did) I would have said, well I laughed a lot the last few months and that's all that matters.