tough decision

[Ready2Dance]

Here's my take. I am currently seeking my placement on the transplant list (I'll know more Monday- eek!) and I wasn't sure what I wanted to do. Like you, I was tired of being short of breath, but mostly I am scared of the "next infection" because it seems to get harder and harder to regain anything. I currently have an FEV1 at about 25% and was told to not wait on contacting a center when they were at 30%.

It's better to be listed now and have a long wait than to wait and not have a chance to be listed (IMO) but you need to make sure that it's what works with you. I was asked "If you had to get the transplant tomorrow, would you?" 5 months ago I would have told you no. In fact, that's what I did at the clinic. They decided to continue to follow me, but not to list me. Since then, I've decided that yes, I would do it tomorrow. But you need to come to that conclusion on your own. It took a lot of soul searching.

So after much babbling... I just want to say best of luck. It's hard to deal with and if you need someone just to vent to about all of the stuff you're going through, feel free to PM me and I'll give you my email and stuff. I'm right there with you! Take care!!

 

[Ready2Dance]

Here's my take. I am currently seeking my placement on the transplant list (I'll know more Monday- eek!) and I wasn't sure what I wanted to do. Like you, I was tired of being short of breath, but mostly I am scared of the "next infection" because it seems to get harder and harder to regain anything. I currently have an FEV1 at about 25% and was told to not wait on contacting a center when they were at 30%.

It's better to be listed now and have a long wait than to wait and not have a chance to be listed (IMO) but you need to make sure that it's what works with you. I was asked "If you had to get the transplant tomorrow, would you?" 5 months ago I would have told you no. In fact, that's what I did at the clinic. They decided to continue to follow me, but not to list me. Since then, I've decided that yes, I would do it tomorrow. But you need to come to that conclusion on your own. It took a lot of soul searching.

So after much babbling... I just want to say best of luck. It's hard to deal with and if you need someone just to vent to about all of the stuff you're going through, feel free to PM me and I'll give you my email and stuff. I'm right there with you! Take care!!

 

[Ready2Dance]

Here's my take. I am currently seeking my placement on the transplant list (I'll know more Monday- eek!) and I wasn't sure what I wanted to do. Like you, I was tired of being short of breath, but mostly I am scared of the "next infection" because it seems to get harder and harder to regain anything. I currently have an FEV1 at about 25% and was told to not wait on contacting a center when they were at 30%.

It's better to be listed now and have a long wait than to wait and not have a chance to be listed (IMO) but you need to make sure that it's what works with you. I was asked "If you had to get the transplant tomorrow, would you?" 5 months ago I would have told you no. In fact, that's what I did at the clinic. They decided to continue to follow me, but not to list me. Since then, I've decided that yes, I would do it tomorrow. But you need to come to that conclusion on your own. It took a lot of soul searching.

So after much babbling... I just want to say best of luck. It's hard to deal with and if you need someone just to vent to about all of the stuff you're going through, feel free to PM me and I'll give you my email and stuff. I'm right there with you! Take care!!

 

[Ready2Dance]

Here's my take. I am currently seeking my placement on the transplant list (I'll know more Monday- eek!) and I wasn't sure what I wanted to do. Like you, I was tired of being short of breath, but mostly I am scared of the "next infection" because it seems to get harder and harder to regain anything. I currently have an FEV1 at about 25% and was told to not wait on contacting a center when they were at 30%.

It's better to be listed now and have a long wait than to wait and not have a chance to be listed (IMO) but you need to make sure that it's what works with you. I was asked "If you had to get the transplant tomorrow, would you?" 5 months ago I would have told you no. In fact, that's what I did at the clinic. They decided to continue to follow me, but not to list me. Since then, I've decided that yes, I would do it tomorrow. But you need to come to that conclusion on your own. It took a lot of soul searching.

So after much babbling... I just want to say best of luck. It's hard to deal with and if you need someone just to vent to about all of the stuff you're going through, feel free to PM me and I'll give you my email and stuff. I'm right there with you! Take care!!

 

[Ready2Dance]

Here's my take. I am currently seeking my placement on the transplant list (I'll know more Monday- eek!) and I wasn't sure what I wanted to do. Like you, I was tired of being short of breath, but mostly I am scared of the "next infection" because it seems to get harder and harder to regain anything. I currently have an FEV1 at about 25% and was told to not wait on contacting a center when they were at 30%.
<br />
<br />It's better to be listed now and have a long wait than to wait and not have a chance to be listed (IMO) but you need to make sure that it's what works with you. I was asked "If you had to get the transplant tomorrow, would you?" 5 months ago I would have told you no. In fact, that's what I did at the clinic. They decided to continue to follow me, but not to list me. Since then, I've decided that yes, I would do it tomorrow. But you need to come to that conclusion on your own. It took a lot of soul searching.
<br />
<br />So after much babbling... I just want to say best of luck. It's hard to deal with and if you need someone just to vent to about all of the stuff you're going through, feel free to PM me and I'll give you my email and stuff. I'm right there with you! Take care!!
<br />
<br />

 

[Skye]

wow....yes, you do have A LOT to deal with and I respect the fact that you have come here and shared with us. I do think you have answered some of your own questions. I think a big question they ask you is "if we list you today would you be ready to accept lungs tomorrow if they were available". What is your quality of life? Only you know that.

I have been through the whole process and eval. and I can honestly say that even with what may be considered a low lung function I consider my quality of life to be VERY high. I don't get SOB easily and I am not in and out of the hospital. So I CAN NOT say yes to that question. I have experienced the worst of CF though and was able to recover; however, if I had continued in the state I was in a few years ago, my answer would probably be very different.

I will also say that the transplant surgeon I met with a year ago said to me that we never transplant patients for fear of what might happen if we don't. Meaning they don't consider someone for transplant because they are afraid of the next illness or pneumonia. They look at the whole person in their current state with questions like: arterial blood gas, dependance on oxygen, abx resistance, number of hospitalizations, hemoptysis, pulmonary hypertension (how it is affecting your heart), dramatic change in FEV1, overall quality of life. Those are the important things to consider over fear of what may happen IMHO.

Please PM any of us if you need more support or questions answered<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Skye]

wow....yes, you do have A LOT to deal with and I respect the fact that you have come here and shared with us. I do think you have answered some of your own questions. I think a big question they ask you is "if we list you today would you be ready to accept lungs tomorrow if they were available". What is your quality of life? Only you know that.

I have been through the whole process and eval. and I can honestly say that even with what may be considered a low lung function I consider my quality of life to be VERY high. I don't get SOB easily and I am not in and out of the hospital. So I CAN NOT say yes to that question. I have experienced the worst of CF though and was able to recover; however, if I had continued in the state I was in a few years ago, my answer would probably be very different.

I will also say that the transplant surgeon I met with a year ago said to me that we never transplant patients for fear of what might happen if we don't. Meaning they don't consider someone for transplant because they are afraid of the next illness or pneumonia. They look at the whole person in their current state with questions like: arterial blood gas, dependance on oxygen, abx resistance, number of hospitalizations, hemoptysis, pulmonary hypertension (how it is affecting your heart), dramatic change in FEV1, overall quality of life. Those are the important things to consider over fear of what may happen IMHO.

Please PM any of us if you need more support or questions answered<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Skye]

wow....yes, you do have A LOT to deal with and I respect the fact that you have come here and shared with us. I do think you have answered some of your own questions. I think a big question they ask you is "if we list you today would you be ready to accept lungs tomorrow if they were available". What is your quality of life? Only you know that.

I have been through the whole process and eval. and I can honestly say that even with what may be considered a low lung function I consider my quality of life to be VERY high. I don't get SOB easily and I am not in and out of the hospital. So I CAN NOT say yes to that question. I have experienced the worst of CF though and was able to recover; however, if I had continued in the state I was in a few years ago, my answer would probably be very different.

I will also say that the transplant surgeon I met with a year ago said to me that we never transplant patients for fear of what might happen if we don't. Meaning they don't consider someone for transplant because they are afraid of the next illness or pneumonia. They look at the whole person in their current state with questions like: arterial blood gas, dependance on oxygen, abx resistance, number of hospitalizations, hemoptysis, pulmonary hypertension (how it is affecting your heart), dramatic change in FEV1, overall quality of life. Those are the important things to consider over fear of what may happen IMHO.

Please PM any of us if you need more support or questions answered<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Skye]

wow....yes, you do have A LOT to deal with and I respect the fact that you have come here and shared with us. I do think you have answered some of your own questions. I think a big question they ask you is "if we list you today would you be ready to accept lungs tomorrow if they were available". What is your quality of life? Only you know that.

I have been through the whole process and eval. and I can honestly say that even with what may be considered a low lung function I consider my quality of life to be VERY high. I don't get SOB easily and I am not in and out of the hospital. So I CAN NOT say yes to that question. I have experienced the worst of CF though and was able to recover; however, if I had continued in the state I was in a few years ago, my answer would probably be very different.

I will also say that the transplant surgeon I met with a year ago said to me that we never transplant patients for fear of what might happen if we don't. Meaning they don't consider someone for transplant because they are afraid of the next illness or pneumonia. They look at the whole person in their current state with questions like: arterial blood gas, dependance on oxygen, abx resistance, number of hospitalizations, hemoptysis, pulmonary hypertension (how it is affecting your heart), dramatic change in FEV1, overall quality of life. Those are the important things to consider over fear of what may happen IMHO.

Please PM any of us if you need more support or questions answered<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Skye]

wow....yes, you do have A LOT to deal with and I respect the fact that you have come here and shared with us. I do think you have answered some of your own questions. I think a big question they ask you is "if we list you today would you be ready to accept lungs tomorrow if they were available". What is your quality of life? Only you know that.
<br />
<br />I have been through the whole process and eval. and I can honestly say that even with what may be considered a low lung function I consider my quality of life to be VERY high. I don't get SOB easily and I am not in and out of the hospital. So I CAN NOT say yes to that question. I have experienced the worst of CF though and was able to recover; however, if I had continued in the state I was in a few years ago, my answer would probably be very different.
<br />
<br />I will also say that the transplant surgeon I met with a year ago said to me that we never transplant patients for fear of what might happen if we don't. Meaning they don't consider someone for transplant because they are afraid of the next illness or pneumonia. They look at the whole person in their current state with questions like: arterial blood gas, dependance on oxygen, abx resistance, number of hospitalizations, hemoptysis, pulmonary hypertension (how it is affecting your heart), dramatic change in FEV1, overall quality of life. Those are the important things to consider over fear of what may happen IMHO.
<br />
<br />Please PM any of us if you need more support or questions answered<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[gsplover]

Thank you to everyone that commented. I agree I think I did make my own decison. I think I need to type things out to see how I really felt. My quality of life sucks. Though I feel I have a higher FEV1s than when most are listed.I feel like crap all the time. I get SOB doing the littlest things. My day is scheduled around a home health nurse every day. I want to live a normal life again and am ready to do that. The last thing I have to do is have a dental exam and then I can be listed and activated. I have to have faith that my new lungs will come when the time is right!

 

[gsplover]

Thank you to everyone that commented. I agree I think I did make my own decison. I think I need to type things out to see how I really felt. My quality of life sucks. Though I feel I have a higher FEV1s than when most are listed.I feel like crap all the time. I get SOB doing the littlest things. My day is scheduled around a home health nurse every day. I want to live a normal life again and am ready to do that. The last thing I have to do is have a dental exam and then I can be listed and activated. I have to have faith that my new lungs will come when the time is right!

 

[gsplover]

Thank you to everyone that commented. I agree I think I did make my own decison. I think I need to type things out to see how I really felt. My quality of life sucks. Though I feel I have a higher FEV1s than when most are listed.I feel like crap all the time. I get SOB doing the littlest things. My day is scheduled around a home health nurse every day. I want to live a normal life again and am ready to do that. The last thing I have to do is have a dental exam and then I can be listed and activated. I have to have faith that my new lungs will come when the time is right!

 

[gsplover]

Thank you to everyone that commented. I agree I think I did make my own decison. I think I need to type things out to see how I really felt. My quality of life sucks. Though I feel I have a higher FEV1s than when most are listed.I feel like crap all the time. I get SOB doing the littlest things. My day is scheduled around a home health nurse every day. I want to live a normal life again and am ready to do that. The last thing I have to do is have a dental exam and then I can be listed and activated. I have to have faith that my new lungs will come when the time is right!

 

[gsplover]

Thank you to everyone that commented. I agree I think I did make my own decison. I think I need to type things out to see how I really felt. My quality of life sucks. Though I feel I have a higher FEV1s than when most are listed.I feel like crap all the time. I get SOB doing the littlest things. My day is scheduled around a home health nurse every day. I want to live a normal life again and am ready to do that. The last thing I have to do is have a dental exam and then I can be listed and activated. I have to have faith that my new lungs will come when the time is right!

 

[MicheleGazelle]

If it were me, I would go ahead and get listed. Then start working on getting healthier. My wish for you would be that you wind up too healthy to stay listed, but in the mean time you would have assurance that you can get new lungs if you can't get healthier without them.


I know, I know -- I sound like a crazy lady and the idea that you could get healthier again when you are so sick seems like a completely insane thing to say. But I was bedridden the first part of 2001 for about 3 1/2 months and housebound a lot for long periods. I have been gradually getting better for a little over 7 years and have gradually been getting my life back. My sincerest wish is for you to also get your life back, one way or the other.

Peace. And good luck with this.

 

[MicheleGazelle]

If it were me, I would go ahead and get listed. Then start working on getting healthier. My wish for you would be that you wind up too healthy to stay listed, but in the mean time you would have assurance that you can get new lungs if you can't get healthier without them.


I know, I know -- I sound like a crazy lady and the idea that you could get healthier again when you are so sick seems like a completely insane thing to say. But I was bedridden the first part of 2001 for about 3 1/2 months and housebound a lot for long periods. I have been gradually getting better for a little over 7 years and have gradually been getting my life back. My sincerest wish is for you to also get your life back, one way or the other.

Peace. And good luck with this.

 

[MicheleGazelle]

If it were me, I would go ahead and get listed. Then start working on getting healthier. My wish for you would be that you wind up too healthy to stay listed, but in the mean time you would have assurance that you can get new lungs if you can't get healthier without them.


I know, I know -- I sound like a crazy lady and the idea that you could get healthier again when you are so sick seems like a completely insane thing to say. But I was bedridden the first part of 2001 for about 3 1/2 months and housebound a lot for long periods. I have been gradually getting better for a little over 7 years and have gradually been getting my life back. My sincerest wish is for you to also get your life back, one way or the other.

Peace. And good luck with this.

 

[MicheleGazelle]

If it were me, I would go ahead and get listed. Then start working on getting healthier. My wish for you would be that you wind up too healthy to stay listed, but in the mean time you would have assurance that you can get new lungs if you can't get healthier without them.


I know, I know -- I sound like a crazy lady and the idea that you could get healthier again when you are so sick seems like a completely insane thing to say. But I was bedridden the first part of 2001 for about 3 1/2 months and housebound a lot for long periods. I have been gradually getting better for a little over 7 years and have gradually been getting my life back. My sincerest wish is for you to also get your life back, one way or the other.

Peace. And good luck with this.

 

[MicheleGazelle]

If it were me, I would go ahead and get listed. Then start working on getting healthier. My wish for you would be that you wind up too healthy to stay listed, but in the mean time you would have assurance that you can get new lungs if you can't get healthier without them.
<br />
<br />
<br />I know, I know -- I sound like a crazy lady and the idea that you could get healthier again when you are so sick seems like a completely insane thing to say. But I was bedridden the first part of 2001 for about 3 1/2 months and housebound a lot for long periods. I have been gradually getting better for a little over 7 years and have gradually been getting my life back. My sincerest wish is for you to also get your life back, one way or the other.
<br />
<br />Peace. And good luck with this.