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transplant
- Thread starter jfarel
- Start date
C
Cutecurlz
Guest
I'm not sure really....but my brother only had 10% of his lung capacity and he had his double lung transplant 1 week b4 Christmas last year (2006)...
C
Cutecurlz
Guest
I'm not sure really....but my brother only had 10% of his lung capacity and he had his double lung transplant 1 week b4 Christmas last year (2006)...
C
Cutecurlz
Guest
I'm not sure really....but my brother only had 10% of his lung capacity and he had his double lung transplant 1 week b4 Christmas last year (2006)...
TwistedTanya
New member
I've heard that the thing about waiting till you get sicker is that the sicker you are going in, the harder the recuperation is. What if you had a sudden drop and couldn't recover from it and needed a lung transplant right away. There's that possibility they couldn't find you the right pair in time. People do die waiting on the list b/c they wait too long to be evaluated and their body can't keep up. I think it's best to start taking steps when you get into the 30's% range. That's when they should give you info on it and give you time to really think about it as something you'll need in the future and do some research and talking to other's who've gone through it. At first I was WAY too scared b/c a lot is that it's something different we aren't used to. The fear of the unknown. After lots of talks, research, and being tired of not having much of a life anymore, I finally got to the point where I am SOOOO ready for it! I got listed recently and I'm at 29%. I've been hovering between 31% to 27% and down to 25% when I was sick. My 02 is around 94% give or take a point. So I'm not as bad as some people on the list but my quality of life has gone downhill and I'm tired of not being able to go out and have fun. My biggest problem is I get frequent low grade fevers and infections. I'm just tired of all this! But, I had my period where I went through feeling too well for transplant yet. It just kinda hit me one day that I was ready! It's better to get listed and be on inactive then to wait too long and miss your chance. Best of luck!!!
TwistedTanya
New member
I've heard that the thing about waiting till you get sicker is that the sicker you are going in, the harder the recuperation is. What if you had a sudden drop and couldn't recover from it and needed a lung transplant right away. There's that possibility they couldn't find you the right pair in time. People do die waiting on the list b/c they wait too long to be evaluated and their body can't keep up. I think it's best to start taking steps when you get into the 30's% range. That's when they should give you info on it and give you time to really think about it as something you'll need in the future and do some research and talking to other's who've gone through it. At first I was WAY too scared b/c a lot is that it's something different we aren't used to. The fear of the unknown. After lots of talks, research, and being tired of not having much of a life anymore, I finally got to the point where I am SOOOO ready for it! I got listed recently and I'm at 29%. I've been hovering between 31% to 27% and down to 25% when I was sick. My 02 is around 94% give or take a point. So I'm not as bad as some people on the list but my quality of life has gone downhill and I'm tired of not being able to go out and have fun. My biggest problem is I get frequent low grade fevers and infections. I'm just tired of all this! But, I had my period where I went through feeling too well for transplant yet. It just kinda hit me one day that I was ready! It's better to get listed and be on inactive then to wait too long and miss your chance. Best of luck!!!
TwistedTanya
New member
I've heard that the thing about waiting till you get sicker is that the sicker you are going in, the harder the recuperation is. What if you had a sudden drop and couldn't recover from it and needed a lung transplant right away. There's that possibility they couldn't find you the right pair in time. People do die waiting on the list b/c they wait too long to be evaluated and their body can't keep up. I think it's best to start taking steps when you get into the 30's% range. That's when they should give you info on it and give you time to really think about it as something you'll need in the future and do some research and talking to other's who've gone through it. At first I was WAY too scared b/c a lot is that it's something different we aren't used to. The fear of the unknown. After lots of talks, research, and being tired of not having much of a life anymore, I finally got to the point where I am SOOOO ready for it! I got listed recently and I'm at 29%. I've been hovering between 31% to 27% and down to 25% when I was sick. My 02 is around 94% give or take a point. So I'm not as bad as some people on the list but my quality of life has gone downhill and I'm tired of not being able to go out and have fun. My biggest problem is I get frequent low grade fevers and infections. I'm just tired of all this! But, I had my period where I went through feeling too well for transplant yet. It just kinda hit me one day that I was ready! It's better to get listed and be on inactive then to wait too long and miss your chance. Best of luck!!!
TwistedTanya
New member
I've heard that the thing about waiting till you get sicker is that the sicker you are going in, the harder the recuperation is. What if you had a sudden drop and couldn't recover from it and needed a lung transplant right away. There's that possibility they couldn't find you the right pair in time. People do die waiting on the list b/c they wait too long to be evaluated and their body can't keep up. I think it's best to start taking steps when you get into the 30's% range. That's when they should give you info on it and give you time to really think about it as something you'll need in the future and do some research and talking to other's who've gone through it. At first I was WAY too scared b/c a lot is that it's something different we aren't used to. The fear of the unknown. After lots of talks, research, and being tired of not having much of a life anymore, I finally got to the point where I am SOOOO ready for it! I got listed recently and I'm at 29%. I've been hovering between 31% to 27% and down to 25% when I was sick. My 02 is around 94% give or take a point. So I'm not as bad as some people on the list but my quality of life has gone downhill and I'm tired of not being able to go out and have fun. My biggest problem is I get frequent low grade fevers and infections. I'm just tired of all this! But, I had my period where I went through feeling too well for transplant yet. It just kinda hit me one day that I was ready! It's better to get listed and be on inactive then to wait too long and miss your chance. Best of luck!!!
TwistedTanya
New member
I've heard that the thing about waiting till you get sicker is that the sicker you are going in, the harder the recuperation is. What if you had a sudden drop and couldn't recover from it and needed a lung transplant right away. There's that possibility they couldn't find you the right pair in time. People do die waiting on the list b/c they wait too long to be evaluated and their body can't keep up. I think it's best to start taking steps when you get into the 30's% range. That's when they should give you info on it and give you time to really think about it as something you'll need in the future and do some research and talking to other's who've gone through it. At first I was WAY too scared b/c a lot is that it's something different we aren't used to. The fear of the unknown. After lots of talks, research, and being tired of not having much of a life anymore, I finally got to the point where I am SOOOO ready for it! I got listed recently and I'm at 29%. I've been hovering between 31% to 27% and down to 25% when I was sick. My 02 is around 94% give or take a point. So I'm not as bad as some people on the list but my quality of life has gone downhill and I'm tired of not being able to go out and have fun. My biggest problem is I get frequent low grade fevers and infections. I'm just tired of all this! But, I had my period where I went through feeling too well for transplant yet. It just kinda hit me one day that I was ready! It's better to get listed and be on inactive then to wait too long and miss your chance. Best of luck!!!
coltsfan715
New member
I was listed when my PFTs were at around 29% and transplanted 6 weeks later... when my PFTs were at 22%. That being said they had my information showing 29% I would imagine because I had not had any updated PFTs through my transplant center when I was called. I only know that was my PFT level because I was on IVs and my CF clinic had done my PFTs the day before I was called to make sure that I was or was not ready to come off IVs.
I think most people - regardless of diagnosis - do NOT want to believe that they are in need of a transplant. There body is good enough at least right now to sustain them or that they have years left in them. I felt like I would go to my first transplant appt and be told I was too healthy. lol obviously that did not happen. Due to that experience and me finally being honest with myself I know for me that I was sick and just didn't want to admit it... call it denial whatever I was in it.
I think alot of us do that whether or not we want to admit it. I think if all of us are honest with ourselves when we are presented with the transplant question then it would make the decision easier. I had to admit to myself I was at a point where it was completely possible I was going to die. No one wants to admit that - no one wants those words to have to be said especially be themselves. That is completely normal.
For me I figured I wanted to do more with my life so that was enough for me to want to have a transplant. Then I figured I could handle being called so long as more of my days were bad then good.
I think if the right match comes along for you regardless of solely your PFTs then you will be called. I was still pretty functional when I was called. Things were extremely hard but 1 month before I was called I went to Walt Disney World with my friends. Yes I was toting Oxygen ...and lots of it but I went and enjoyed myself. So just because you are functional doesn't mean you aren't in need of a transplant. I would just take into account the opinion of your docs, your test results .. ALL of them not just PFTs ... AND how you feel. Be honest with yourself about the situation and then make the decision.
As for whether or not it is worth it ....um yeah .. I am 2 years out now and have plenty of fight left in me. I have had relatively few problems since my transplant as well. So yes it is true that life span MAY only be increased a few years it is also true that you could get another decade or 2 out of it. There is a man at my center that had a lung transplant.. though yes it was a single... about 18 years ago. That and I have already told my docs that I am going to live forever so there ya have it. Alot of your success post transplant depends on how you take care of yourself the rest of it is luck. Cause lets be honest sometimes the worst stuff happens to the most deserving people.
Alot of that was for the poster questioning whether or not transplant was worth it and for you John.
Also to add I feel like I have missed something because I thought you were already listed somewhere j.
Best Wishes,
Lindsey
I think most people - regardless of diagnosis - do NOT want to believe that they are in need of a transplant. There body is good enough at least right now to sustain them or that they have years left in them. I felt like I would go to my first transplant appt and be told I was too healthy. lol obviously that did not happen. Due to that experience and me finally being honest with myself I know for me that I was sick and just didn't want to admit it... call it denial whatever I was in it.
I think alot of us do that whether or not we want to admit it. I think if all of us are honest with ourselves when we are presented with the transplant question then it would make the decision easier. I had to admit to myself I was at a point where it was completely possible I was going to die. No one wants to admit that - no one wants those words to have to be said especially be themselves. That is completely normal.
For me I figured I wanted to do more with my life so that was enough for me to want to have a transplant. Then I figured I could handle being called so long as more of my days were bad then good.
I think if the right match comes along for you regardless of solely your PFTs then you will be called. I was still pretty functional when I was called. Things were extremely hard but 1 month before I was called I went to Walt Disney World with my friends. Yes I was toting Oxygen ...and lots of it but I went and enjoyed myself. So just because you are functional doesn't mean you aren't in need of a transplant. I would just take into account the opinion of your docs, your test results .. ALL of them not just PFTs ... AND how you feel. Be honest with yourself about the situation and then make the decision.
As for whether or not it is worth it ....um yeah .. I am 2 years out now and have plenty of fight left in me. I have had relatively few problems since my transplant as well. So yes it is true that life span MAY only be increased a few years it is also true that you could get another decade or 2 out of it. There is a man at my center that had a lung transplant.. though yes it was a single... about 18 years ago. That and I have already told my docs that I am going to live forever so there ya have it. Alot of your success post transplant depends on how you take care of yourself the rest of it is luck. Cause lets be honest sometimes the worst stuff happens to the most deserving people.
Alot of that was for the poster questioning whether or not transplant was worth it and for you John.
Also to add I feel like I have missed something because I thought you were already listed somewhere j.
Best Wishes,
Lindsey
coltsfan715
New member
I was listed when my PFTs were at around 29% and transplanted 6 weeks later... when my PFTs were at 22%. That being said they had my information showing 29% I would imagine because I had not had any updated PFTs through my transplant center when I was called. I only know that was my PFT level because I was on IVs and my CF clinic had done my PFTs the day before I was called to make sure that I was or was not ready to come off IVs.
I think most people - regardless of diagnosis - do NOT want to believe that they are in need of a transplant. There body is good enough at least right now to sustain them or that they have years left in them. I felt like I would go to my first transplant appt and be told I was too healthy. lol obviously that did not happen. Due to that experience and me finally being honest with myself I know for me that I was sick and just didn't want to admit it... call it denial whatever I was in it.
I think alot of us do that whether or not we want to admit it. I think if all of us are honest with ourselves when we are presented with the transplant question then it would make the decision easier. I had to admit to myself I was at a point where it was completely possible I was going to die. No one wants to admit that - no one wants those words to have to be said especially be themselves. That is completely normal.
For me I figured I wanted to do more with my life so that was enough for me to want to have a transplant. Then I figured I could handle being called so long as more of my days were bad then good.
I think if the right match comes along for you regardless of solely your PFTs then you will be called. I was still pretty functional when I was called. Things were extremely hard but 1 month before I was called I went to Walt Disney World with my friends. Yes I was toting Oxygen ...and lots of it but I went and enjoyed myself. So just because you are functional doesn't mean you aren't in need of a transplant. I would just take into account the opinion of your docs, your test results .. ALL of them not just PFTs ... AND how you feel. Be honest with yourself about the situation and then make the decision.
As for whether or not it is worth it ....um yeah .. I am 2 years out now and have plenty of fight left in me. I have had relatively few problems since my transplant as well. So yes it is true that life span MAY only be increased a few years it is also true that you could get another decade or 2 out of it. There is a man at my center that had a lung transplant.. though yes it was a single... about 18 years ago. That and I have already told my docs that I am going to live forever so there ya have it. Alot of your success post transplant depends on how you take care of yourself the rest of it is luck. Cause lets be honest sometimes the worst stuff happens to the most deserving people.
Alot of that was for the poster questioning whether or not transplant was worth it and for you John.
Also to add I feel like I have missed something because I thought you were already listed somewhere j.
Best Wishes,
Lindsey
I think most people - regardless of diagnosis - do NOT want to believe that they are in need of a transplant. There body is good enough at least right now to sustain them or that they have years left in them. I felt like I would go to my first transplant appt and be told I was too healthy. lol obviously that did not happen. Due to that experience and me finally being honest with myself I know for me that I was sick and just didn't want to admit it... call it denial whatever I was in it.
I think alot of us do that whether or not we want to admit it. I think if all of us are honest with ourselves when we are presented with the transplant question then it would make the decision easier. I had to admit to myself I was at a point where it was completely possible I was going to die. No one wants to admit that - no one wants those words to have to be said especially be themselves. That is completely normal.
For me I figured I wanted to do more with my life so that was enough for me to want to have a transplant. Then I figured I could handle being called so long as more of my days were bad then good.
I think if the right match comes along for you regardless of solely your PFTs then you will be called. I was still pretty functional when I was called. Things were extremely hard but 1 month before I was called I went to Walt Disney World with my friends. Yes I was toting Oxygen ...and lots of it but I went and enjoyed myself. So just because you are functional doesn't mean you aren't in need of a transplant. I would just take into account the opinion of your docs, your test results .. ALL of them not just PFTs ... AND how you feel. Be honest with yourself about the situation and then make the decision.
As for whether or not it is worth it ....um yeah .. I am 2 years out now and have plenty of fight left in me. I have had relatively few problems since my transplant as well. So yes it is true that life span MAY only be increased a few years it is also true that you could get another decade or 2 out of it. There is a man at my center that had a lung transplant.. though yes it was a single... about 18 years ago. That and I have already told my docs that I am going to live forever so there ya have it. Alot of your success post transplant depends on how you take care of yourself the rest of it is luck. Cause lets be honest sometimes the worst stuff happens to the most deserving people.
Alot of that was for the poster questioning whether or not transplant was worth it and for you John.
Also to add I feel like I have missed something because I thought you were already listed somewhere j.
Best Wishes,
Lindsey
coltsfan715
New member
I was listed when my PFTs were at around 29% and transplanted 6 weeks later... when my PFTs were at 22%. That being said they had my information showing 29% I would imagine because I had not had any updated PFTs through my transplant center when I was called. I only know that was my PFT level because I was on IVs and my CF clinic had done my PFTs the day before I was called to make sure that I was or was not ready to come off IVs.
I think most people - regardless of diagnosis - do NOT want to believe that they are in need of a transplant. There body is good enough at least right now to sustain them or that they have years left in them. I felt like I would go to my first transplant appt and be told I was too healthy. lol obviously that did not happen. Due to that experience and me finally being honest with myself I know for me that I was sick and just didn't want to admit it... call it denial whatever I was in it.
I think alot of us do that whether or not we want to admit it. I think if all of us are honest with ourselves when we are presented with the transplant question then it would make the decision easier. I had to admit to myself I was at a point where it was completely possible I was going to die. No one wants to admit that - no one wants those words to have to be said especially be themselves. That is completely normal.
For me I figured I wanted to do more with my life so that was enough for me to want to have a transplant. Then I figured I could handle being called so long as more of my days were bad then good.
I think if the right match comes along for you regardless of solely your PFTs then you will be called. I was still pretty functional when I was called. Things were extremely hard but 1 month before I was called I went to Walt Disney World with my friends. Yes I was toting Oxygen ...and lots of it but I went and enjoyed myself. So just because you are functional doesn't mean you aren't in need of a transplant. I would just take into account the opinion of your docs, your test results .. ALL of them not just PFTs ... AND how you feel. Be honest with yourself about the situation and then make the decision.
As for whether or not it is worth it ....um yeah .. I am 2 years out now and have plenty of fight left in me. I have had relatively few problems since my transplant as well. So yes it is true that life span MAY only be increased a few years it is also true that you could get another decade or 2 out of it. There is a man at my center that had a lung transplant.. though yes it was a single... about 18 years ago. That and I have already told my docs that I am going to live forever so there ya have it. Alot of your success post transplant depends on how you take care of yourself the rest of it is luck. Cause lets be honest sometimes the worst stuff happens to the most deserving people.
Alot of that was for the poster questioning whether or not transplant was worth it and for you John.
Also to add I feel like I have missed something because I thought you were already listed somewhere j.
Best Wishes,
Lindsey
I think most people - regardless of diagnosis - do NOT want to believe that they are in need of a transplant. There body is good enough at least right now to sustain them or that they have years left in them. I felt like I would go to my first transplant appt and be told I was too healthy. lol obviously that did not happen. Due to that experience and me finally being honest with myself I know for me that I was sick and just didn't want to admit it... call it denial whatever I was in it.
I think alot of us do that whether or not we want to admit it. I think if all of us are honest with ourselves when we are presented with the transplant question then it would make the decision easier. I had to admit to myself I was at a point where it was completely possible I was going to die. No one wants to admit that - no one wants those words to have to be said especially be themselves. That is completely normal.
For me I figured I wanted to do more with my life so that was enough for me to want to have a transplant. Then I figured I could handle being called so long as more of my days were bad then good.
I think if the right match comes along for you regardless of solely your PFTs then you will be called. I was still pretty functional when I was called. Things were extremely hard but 1 month before I was called I went to Walt Disney World with my friends. Yes I was toting Oxygen ...and lots of it but I went and enjoyed myself. So just because you are functional doesn't mean you aren't in need of a transplant. I would just take into account the opinion of your docs, your test results .. ALL of them not just PFTs ... AND how you feel. Be honest with yourself about the situation and then make the decision.
As for whether or not it is worth it ....um yeah .. I am 2 years out now and have plenty of fight left in me. I have had relatively few problems since my transplant as well. So yes it is true that life span MAY only be increased a few years it is also true that you could get another decade or 2 out of it. There is a man at my center that had a lung transplant.. though yes it was a single... about 18 years ago. That and I have already told my docs that I am going to live forever so there ya have it. Alot of your success post transplant depends on how you take care of yourself the rest of it is luck. Cause lets be honest sometimes the worst stuff happens to the most deserving people.
Alot of that was for the poster questioning whether or not transplant was worth it and for you John.
Also to add I feel like I have missed something because I thought you were already listed somewhere j.
Best Wishes,
Lindsey
coltsfan715
New member
I was listed when my PFTs were at around 29% and transplanted 6 weeks later... when my PFTs were at 22%. That being said they had my information showing 29% I would imagine because I had not had any updated PFTs through my transplant center when I was called. I only know that was my PFT level because I was on IVs and my CF clinic had done my PFTs the day before I was called to make sure that I was or was not ready to come off IVs.
I think most people - regardless of diagnosis - do NOT want to believe that they are in need of a transplant. There body is good enough at least right now to sustain them or that they have years left in them. I felt like I would go to my first transplant appt and be told I was too healthy. lol obviously that did not happen. Due to that experience and me finally being honest with myself I know for me that I was sick and just didn't want to admit it... call it denial whatever I was in it.
I think alot of us do that whether or not we want to admit it. I think if all of us are honest with ourselves when we are presented with the transplant question then it would make the decision easier. I had to admit to myself I was at a point where it was completely possible I was going to die. No one wants to admit that - no one wants those words to have to be said especially be themselves. That is completely normal.
For me I figured I wanted to do more with my life so that was enough for me to want to have a transplant. Then I figured I could handle being called so long as more of my days were bad then good.
I think if the right match comes along for you regardless of solely your PFTs then you will be called. I was still pretty functional when I was called. Things were extremely hard but 1 month before I was called I went to Walt Disney World with my friends. Yes I was toting Oxygen ...and lots of it but I went and enjoyed myself. So just because you are functional doesn't mean you aren't in need of a transplant. I would just take into account the opinion of your docs, your test results .. ALL of them not just PFTs ... AND how you feel. Be honest with yourself about the situation and then make the decision.
As for whether or not it is worth it ....um yeah .. I am 2 years out now and have plenty of fight left in me. I have had relatively few problems since my transplant as well. So yes it is true that life span MAY only be increased a few years it is also true that you could get another decade or 2 out of it. There is a man at my center that had a lung transplant.. though yes it was a single... about 18 years ago. That and I have already told my docs that I am going to live forever so there ya have it. Alot of your success post transplant depends on how you take care of yourself the rest of it is luck. Cause lets be honest sometimes the worst stuff happens to the most deserving people.
Alot of that was for the poster questioning whether or not transplant was worth it and for you John.
Also to add I feel like I have missed something because I thought you were already listed somewhere j.
Best Wishes,
Lindsey
I think most people - regardless of diagnosis - do NOT want to believe that they are in need of a transplant. There body is good enough at least right now to sustain them or that they have years left in them. I felt like I would go to my first transplant appt and be told I was too healthy. lol obviously that did not happen. Due to that experience and me finally being honest with myself I know for me that I was sick and just didn't want to admit it... call it denial whatever I was in it.
I think alot of us do that whether or not we want to admit it. I think if all of us are honest with ourselves when we are presented with the transplant question then it would make the decision easier. I had to admit to myself I was at a point where it was completely possible I was going to die. No one wants to admit that - no one wants those words to have to be said especially be themselves. That is completely normal.
For me I figured I wanted to do more with my life so that was enough for me to want to have a transplant. Then I figured I could handle being called so long as more of my days were bad then good.
I think if the right match comes along for you regardless of solely your PFTs then you will be called. I was still pretty functional when I was called. Things were extremely hard but 1 month before I was called I went to Walt Disney World with my friends. Yes I was toting Oxygen ...and lots of it but I went and enjoyed myself. So just because you are functional doesn't mean you aren't in need of a transplant. I would just take into account the opinion of your docs, your test results .. ALL of them not just PFTs ... AND how you feel. Be honest with yourself about the situation and then make the decision.
As for whether or not it is worth it ....um yeah .. I am 2 years out now and have plenty of fight left in me. I have had relatively few problems since my transplant as well. So yes it is true that life span MAY only be increased a few years it is also true that you could get another decade or 2 out of it. There is a man at my center that had a lung transplant.. though yes it was a single... about 18 years ago. That and I have already told my docs that I am going to live forever so there ya have it. Alot of your success post transplant depends on how you take care of yourself the rest of it is luck. Cause lets be honest sometimes the worst stuff happens to the most deserving people.
Alot of that was for the poster questioning whether or not transplant was worth it and for you John.
Also to add I feel like I have missed something because I thought you were already listed somewhere j.
Best Wishes,
Lindsey
coltsfan715
New member
I was listed when my PFTs were at around 29% and transplanted 6 weeks later... when my PFTs were at 22%. That being said they had my information showing 29% I would imagine because I had not had any updated PFTs through my transplant center when I was called. I only know that was my PFT level because I was on IVs and my CF clinic had done my PFTs the day before I was called to make sure that I was or was not ready to come off IVs.
<br />
<br />I think most people - regardless of diagnosis - do NOT want to believe that they are in need of a transplant. There body is good enough at least right now to sustain them or that they have years left in them. I felt like I would go to my first transplant appt and be told I was too healthy. lol obviously that did not happen. Due to that experience and me finally being honest with myself I know for me that I was sick and just didn't want to admit it... call it denial whatever I was in it.
<br />
<br />I think alot of us do that whether or not we want to admit it. I think if all of us are honest with ourselves when we are presented with the transplant question then it would make the decision easier. I had to admit to myself I was at a point where it was completely possible I was going to die. No one wants to admit that - no one wants those words to have to be said especially be themselves. That is completely normal.
<br />
<br />For me I figured I wanted to do more with my life so that was enough for me to want to have a transplant. Then I figured I could handle being called so long as more of my days were bad then good.
<br />
<br />I think if the right match comes along for you regardless of solely your PFTs then you will be called. I was still pretty functional when I was called. Things were extremely hard but 1 month before I was called I went to Walt Disney World with my friends. Yes I was toting Oxygen ...and lots of it but I went and enjoyed myself. So just because you are functional doesn't mean you aren't in need of a transplant. I would just take into account the opinion of your docs, your test results .. ALL of them not just PFTs ... AND how you feel. Be honest with yourself about the situation and then make the decision.
<br />
<br />As for whether or not it is worth it ....um yeah .. I am 2 years out now and have plenty of fight left in me. I have had relatively few problems since my transplant as well. So yes it is true that life span MAY only be increased a few years it is also true that you could get another decade or 2 out of it. There is a man at my center that had a lung transplant.. though yes it was a single... about 18 years ago. That and I have already told my docs that I am going to live forever so there ya have it. Alot of your success post transplant depends on how you take care of yourself the rest of it is luck. Cause lets be honest sometimes the worst stuff happens to the most deserving people.
<br />
<br />Alot of that was for the poster questioning whether or not transplant was worth it and for you John.
<br />
<br />Also to add I feel like I have missed something because I thought you were already listed somewhere j.
<br />
<br />Best Wishes,
<br />Lindsey
<br />
<br />I think most people - regardless of diagnosis - do NOT want to believe that they are in need of a transplant. There body is good enough at least right now to sustain them or that they have years left in them. I felt like I would go to my first transplant appt and be told I was too healthy. lol obviously that did not happen. Due to that experience and me finally being honest with myself I know for me that I was sick and just didn't want to admit it... call it denial whatever I was in it.
<br />
<br />I think alot of us do that whether or not we want to admit it. I think if all of us are honest with ourselves when we are presented with the transplant question then it would make the decision easier. I had to admit to myself I was at a point where it was completely possible I was going to die. No one wants to admit that - no one wants those words to have to be said especially be themselves. That is completely normal.
<br />
<br />For me I figured I wanted to do more with my life so that was enough for me to want to have a transplant. Then I figured I could handle being called so long as more of my days were bad then good.
<br />
<br />I think if the right match comes along for you regardless of solely your PFTs then you will be called. I was still pretty functional when I was called. Things were extremely hard but 1 month before I was called I went to Walt Disney World with my friends. Yes I was toting Oxygen ...and lots of it but I went and enjoyed myself. So just because you are functional doesn't mean you aren't in need of a transplant. I would just take into account the opinion of your docs, your test results .. ALL of them not just PFTs ... AND how you feel. Be honest with yourself about the situation and then make the decision.
<br />
<br />As for whether or not it is worth it ....um yeah .. I am 2 years out now and have plenty of fight left in me. I have had relatively few problems since my transplant as well. So yes it is true that life span MAY only be increased a few years it is also true that you could get another decade or 2 out of it. There is a man at my center that had a lung transplant.. though yes it was a single... about 18 years ago. That and I have already told my docs that I am going to live forever so there ya have it. Alot of your success post transplant depends on how you take care of yourself the rest of it is luck. Cause lets be honest sometimes the worst stuff happens to the most deserving people.
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<br />Alot of that was for the poster questioning whether or not transplant was worth it and for you John.
<br />
<br />Also to add I feel like I have missed something because I thought you were already listed somewhere j.
<br />
<br />Best Wishes,
<br />Lindsey
cfboy,
I am not sure what sites you are reading about lung transplant for CF people, but lunb transplant works nearly the best for those with CF. Could be that we are younger than others getting new lungs, they may have additional health issues, ex smokers have heart problems and other side effects of smoking.
Coming up on Sept 12th, I will be 12 years post lung tx.
I have many friends in that 10 year range of post lung tx.
If you have any questions I can help with, please email me.
luckylungsforjo@aol.com
Joanne
I am not sure what sites you are reading about lung transplant for CF people, but lunb transplant works nearly the best for those with CF. Could be that we are younger than others getting new lungs, they may have additional health issues, ex smokers have heart problems and other side effects of smoking.
Coming up on Sept 12th, I will be 12 years post lung tx.
I have many friends in that 10 year range of post lung tx.
If you have any questions I can help with, please email me.
luckylungsforjo@aol.com
Joanne
cfboy,
I am not sure what sites you are reading about lung transplant for CF people, but lunb transplant works nearly the best for those with CF. Could be that we are younger than others getting new lungs, they may have additional health issues, ex smokers have heart problems and other side effects of smoking.
Coming up on Sept 12th, I will be 12 years post lung tx.
I have many friends in that 10 year range of post lung tx.
If you have any questions I can help with, please email me.
luckylungsforjo@aol.com
Joanne
I am not sure what sites you are reading about lung transplant for CF people, but lunb transplant works nearly the best for those with CF. Could be that we are younger than others getting new lungs, they may have additional health issues, ex smokers have heart problems and other side effects of smoking.
Coming up on Sept 12th, I will be 12 years post lung tx.
I have many friends in that 10 year range of post lung tx.
If you have any questions I can help with, please email me.
luckylungsforjo@aol.com
Joanne
cfboy,
I am not sure what sites you are reading about lung transplant for CF people, but lunb transplant works nearly the best for those with CF. Could be that we are younger than others getting new lungs, they may have additional health issues, ex smokers have heart problems and other side effects of smoking.
Coming up on Sept 12th, I will be 12 years post lung tx.
I have many friends in that 10 year range of post lung tx.
If you have any questions I can help with, please email me.
luckylungsforjo@aol.com
Joanne
I am not sure what sites you are reading about lung transplant for CF people, but lunb transplant works nearly the best for those with CF. Could be that we are younger than others getting new lungs, they may have additional health issues, ex smokers have heart problems and other side effects of smoking.
Coming up on Sept 12th, I will be 12 years post lung tx.
I have many friends in that 10 year range of post lung tx.
If you have any questions I can help with, please email me.
luckylungsforjo@aol.com
Joanne
cfboy,
I am not sure what sites you are reading about lung transplant for CF people, but lunb transplant works nearly the best for those with CF. Could be that we are younger than others getting new lungs, they may have additional health issues, ex smokers have heart problems and other side effects of smoking.
Coming up on Sept 12th, I will be 12 years post lung tx.
I have many friends in that 10 year range of post lung tx.
If you have any questions I can help with, please email me.
luckylungsforjo@aol.com
Joanne
I am not sure what sites you are reading about lung transplant for CF people, but lunb transplant works nearly the best for those with CF. Could be that we are younger than others getting new lungs, they may have additional health issues, ex smokers have heart problems and other side effects of smoking.
Coming up on Sept 12th, I will be 12 years post lung tx.
I have many friends in that 10 year range of post lung tx.
If you have any questions I can help with, please email me.
luckylungsforjo@aol.com
Joanne
cfboy,
<br />
<br />I am not sure what sites you are reading about lung transplant for CF people, but lunb transplant works nearly the best for those with CF. Could be that we are younger than others getting new lungs, they may have additional health issues, ex smokers have heart problems and other side effects of smoking.
<br />
<br />Coming up on Sept 12th, I will be 12 years post lung tx.
<br />I have many friends in that 10 year range of post lung tx.
<br />
<br />If you have any questions I can help with, please email me.
<br />luckylungsforjo@aol.com
<br />
<br />Joanne
<br />
<br />I am not sure what sites you are reading about lung transplant for CF people, but lunb transplant works nearly the best for those with CF. Could be that we are younger than others getting new lungs, they may have additional health issues, ex smokers have heart problems and other side effects of smoking.
<br />
<br />Coming up on Sept 12th, I will be 12 years post lung tx.
<br />I have many friends in that 10 year range of post lung tx.
<br />
<br />If you have any questions I can help with, please email me.
<br />luckylungsforjo@aol.com
<br />
<br />Joanne
jfarel,
You have many great questions. There is a book out there on lung transplantation, and you can buy it at the 2nd Wind site. Called Lung Transplantation.
Everyone has to have an allocation score. The higher the score, the closer you are to tx. They do not want to tx someone who has somewhat good lung functions, because there are risks with lung tx, you don't want them until it is truly time.
Lungs must be tx'd with 4-8 hours after they are recovered. You will not get lungs from all over the country. The country is divided into regions and they ideally want them from the region you are listed in.
As far as you anyone feeling like "I don't need lungs, why is the doc saying I do". You have acclimated, adjusted to your life. You truly do not know what healthy lungs feel like, it has been awile since you had good function and abilities. I had the same feeling. But my health said otherwise.
Email me if I can be of help.
I am almost 12 years post lung tx.
Joanne
You have many great questions. There is a book out there on lung transplantation, and you can buy it at the 2nd Wind site. Called Lung Transplantation.
Everyone has to have an allocation score. The higher the score, the closer you are to tx. They do not want to tx someone who has somewhat good lung functions, because there are risks with lung tx, you don't want them until it is truly time.
Lungs must be tx'd with 4-8 hours after they are recovered. You will not get lungs from all over the country. The country is divided into regions and they ideally want them from the region you are listed in.
As far as you anyone feeling like "I don't need lungs, why is the doc saying I do". You have acclimated, adjusted to your life. You truly do not know what healthy lungs feel like, it has been awile since you had good function and abilities. I had the same feeling. But my health said otherwise.
Email me if I can be of help.
I am almost 12 years post lung tx.
Joanne