You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
A new word in my vocabulary
- Thread starter b12bc
- Start date
theLostMiler
New member
So you must be Mel then <img src="i/expressions/face-icon-small-wink.gif" border="0">
I remember talking to my tx doc
(I have a tx/cf doctor in my cf team, but he's just barely getting a lung tx center going, so like in 10-15 years where I go might be able to do lung transplants... if that makes sense, so when I say transplant/tx doctor, he's not the one really doing it but he studied them etc)
again, after the initial talk about it, I was in the hospital and very optimistic and hopeful, as was he... at the time it was just to get the idea in my head like I said...
Then came the time to actually send my information and charts out to centers... I started crying though I was trying to be "strong" and he said that a lot of people have this idea that transplant "is the end of your rope" and thats why its scary and sad, but in reality, youre extending you life possibly!
Like I said, I still am in the process of wrapping my mind around it, i still cry b/c I am scared and pissed that I AM facing my own mortality...
anyways, I hope you can eventually see it as a blessing (a scary one) but essentially another chance at having a life...
we're all here, and maybe we'll be doing the process together ?
I remember talking to my tx doc
(I have a tx/cf doctor in my cf team, but he's just barely getting a lung tx center going, so like in 10-15 years where I go might be able to do lung transplants... if that makes sense, so when I say transplant/tx doctor, he's not the one really doing it but he studied them etc)
again, after the initial talk about it, I was in the hospital and very optimistic and hopeful, as was he... at the time it was just to get the idea in my head like I said...
Then came the time to actually send my information and charts out to centers... I started crying though I was trying to be "strong" and he said that a lot of people have this idea that transplant "is the end of your rope" and thats why its scary and sad, but in reality, youre extending you life possibly!
Like I said, I still am in the process of wrapping my mind around it, i still cry b/c I am scared and pissed that I AM facing my own mortality...
anyways, I hope you can eventually see it as a blessing (a scary one) but essentially another chance at having a life...
we're all here, and maybe we'll be doing the process together ?
theLostMiler
New member
So you must be Mel then <img src="i/expressions/face-icon-small-wink.gif" border="0">
I remember talking to my tx doc
(I have a tx/cf doctor in my cf team, but he's just barely getting a lung tx center going, so like in 10-15 years where I go might be able to do lung transplants... if that makes sense, so when I say transplant/tx doctor, he's not the one really doing it but he studied them etc)
again, after the initial talk about it, I was in the hospital and very optimistic and hopeful, as was he... at the time it was just to get the idea in my head like I said...
Then came the time to actually send my information and charts out to centers... I started crying though I was trying to be "strong" and he said that a lot of people have this idea that transplant "is the end of your rope" and thats why its scary and sad, but in reality, youre extending you life possibly!
Like I said, I still am in the process of wrapping my mind around it, i still cry b/c I am scared and pissed that I AM facing my own mortality...
anyways, I hope you can eventually see it as a blessing (a scary one) but essentially another chance at having a life...
we're all here, and maybe we'll be doing the process together ?
I remember talking to my tx doc
(I have a tx/cf doctor in my cf team, but he's just barely getting a lung tx center going, so like in 10-15 years where I go might be able to do lung transplants... if that makes sense, so when I say transplant/tx doctor, he's not the one really doing it but he studied them etc)
again, after the initial talk about it, I was in the hospital and very optimistic and hopeful, as was he... at the time it was just to get the idea in my head like I said...
Then came the time to actually send my information and charts out to centers... I started crying though I was trying to be "strong" and he said that a lot of people have this idea that transplant "is the end of your rope" and thats why its scary and sad, but in reality, youre extending you life possibly!
Like I said, I still am in the process of wrapping my mind around it, i still cry b/c I am scared and pissed that I AM facing my own mortality...
anyways, I hope you can eventually see it as a blessing (a scary one) but essentially another chance at having a life...
we're all here, and maybe we'll be doing the process together ?
theLostMiler
New member
So you must be Mel then <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />I remember talking to my tx doc
<br />(I have a tx/cf doctor in my cf team, but he's just barely getting a lung tx center going, so like in 10-15 years where I go might be able to do lung transplants... if that makes sense, so when I say transplant/tx doctor, he's not the one really doing it but he studied them etc)
<br />
<br />again, after the initial talk about it, I was in the hospital and very optimistic and hopeful, as was he... at the time it was just to get the idea in my head like I said...
<br />
<br />Then came the time to actually send my information and charts out to centers... I started crying though I was trying to be "strong" and he said that a lot of people have this idea that transplant "is the end of your rope" and thats why its scary and sad, but in reality, youre extending you life possibly!
<br />
<br />Like I said, I still am in the process of wrapping my mind around it, i still cry b/c I am scared and pissed that I AM facing my own mortality...
<br />
<br />anyways, I hope you can eventually see it as a blessing (a scary one) but essentially another chance at having a life...
<br />
<br />we're all here, and maybe we'll be doing the process together ?
<br />
<br />I remember talking to my tx doc
<br />(I have a tx/cf doctor in my cf team, but he's just barely getting a lung tx center going, so like in 10-15 years where I go might be able to do lung transplants... if that makes sense, so when I say transplant/tx doctor, he's not the one really doing it but he studied them etc)
<br />
<br />again, after the initial talk about it, I was in the hospital and very optimistic and hopeful, as was he... at the time it was just to get the idea in my head like I said...
<br />
<br />Then came the time to actually send my information and charts out to centers... I started crying though I was trying to be "strong" and he said that a lot of people have this idea that transplant "is the end of your rope" and thats why its scary and sad, but in reality, youre extending you life possibly!
<br />
<br />Like I said, I still am in the process of wrapping my mind around it, i still cry b/c I am scared and pissed that I AM facing my own mortality...
<br />
<br />anyways, I hope you can eventually see it as a blessing (a scary one) but essentially another chance at having a life...
<br />
<br />we're all here, and maybe we'll be doing the process together ?
coltsfan715
New member
Hi there
Just wanted to say I know where you are coming from and can say it is terrifying, scary, upsetting, depressing, aggravating, nerve-racking, numbing, and often leaves you feeling completely helpless. I can also say that coming out the other side will give you a sense of accomplishment, relief, peace, and joy. I had a fairly rapid decline with my health as well. I went for near a decade and had remained very stable at around 60% FEV1 and seemed to be doing "ok". I went out one night played softball with friends and woke up the next day barely able to breathe and coughing up blood. Turned out a had a mucous plug that had caused a partial lung collapse. After that I struggled for a year trying to recover and just didn't. Then I approached my docs about transplant.
I was terrified and wasn't even sure if it was what I wanted. I ultimately decided to go for it and can say I am beyond thankful I did. For me I coped in a way that some people would call denial, but it was what I had to do to deal with it. I had severe anxiety about the whole thing - when do you know it is the right time, the waiting, how sick will I get before I get transplanted and so on. I started making a list of all the things I wanted to do post transplant. I kept it a mental list but each time I would start to panic I would think about my list - and I would read it off in my head and then I would add something to it. It was simple things like post transplant I will be able to laugh without coughing, hug my friends, ride a bike and so on. I gave myself something to look forward too.
I also had one of my surgeons ask me one day (after I had asked him a question) "will the answer change your mind?"I said no and he replied then I don't think you want to know the answer it will just serve to scare you. After that I took that philosophy about all of my transplant stuff. I stopped asking questions because I didn't want to know what all could possibly go wrong, because I was going through with the transplant regardless. I honestly feel this has contributed to my well being post transplant because it is less for me to stress about now.
I will stop for now - but I just wanted to say that Miler is right. You are facing your own mortality - as I told my mom part of the process with transplant is that you are almost mourning yourself. You are slowly saying good bye to the life that you know as it is taken away from you and you are unsure if you are going to get that back. It is completely normal to be scared and worried. If you weren't I would honestly think something was wrong with you.
I wish you the best and if nothing else go to a center and check it out - ask a million questions and try to make the decision for you - YOU are the only one that HAS to deal with this decision for the rest of their life so you need to make sure that you are committed to it. That is really the only advice I can give you - do it for you. Even if you decide not too do what you need to for you otherwise you are doing yourself an injustice because though to me it is beyond worth it - it was one of the hardest things I have done and if I weren't committed it would have been a hell of a trip to take for something I was in half way.
Take care
Lindsey
if you ever just want to talk my email is divawithwings@gmail.com. I don't hit this site all the time so that is the best way to reach me
Just wanted to say I know where you are coming from and can say it is terrifying, scary, upsetting, depressing, aggravating, nerve-racking, numbing, and often leaves you feeling completely helpless. I can also say that coming out the other side will give you a sense of accomplishment, relief, peace, and joy. I had a fairly rapid decline with my health as well. I went for near a decade and had remained very stable at around 60% FEV1 and seemed to be doing "ok". I went out one night played softball with friends and woke up the next day barely able to breathe and coughing up blood. Turned out a had a mucous plug that had caused a partial lung collapse. After that I struggled for a year trying to recover and just didn't. Then I approached my docs about transplant.
I was terrified and wasn't even sure if it was what I wanted. I ultimately decided to go for it and can say I am beyond thankful I did. For me I coped in a way that some people would call denial, but it was what I had to do to deal with it. I had severe anxiety about the whole thing - when do you know it is the right time, the waiting, how sick will I get before I get transplanted and so on. I started making a list of all the things I wanted to do post transplant. I kept it a mental list but each time I would start to panic I would think about my list - and I would read it off in my head and then I would add something to it. It was simple things like post transplant I will be able to laugh without coughing, hug my friends, ride a bike and so on. I gave myself something to look forward too.
I also had one of my surgeons ask me one day (after I had asked him a question) "will the answer change your mind?"I said no and he replied then I don't think you want to know the answer it will just serve to scare you. After that I took that philosophy about all of my transplant stuff. I stopped asking questions because I didn't want to know what all could possibly go wrong, because I was going through with the transplant regardless. I honestly feel this has contributed to my well being post transplant because it is less for me to stress about now.
I will stop for now - but I just wanted to say that Miler is right. You are facing your own mortality - as I told my mom part of the process with transplant is that you are almost mourning yourself. You are slowly saying good bye to the life that you know as it is taken away from you and you are unsure if you are going to get that back. It is completely normal to be scared and worried. If you weren't I would honestly think something was wrong with you.
I wish you the best and if nothing else go to a center and check it out - ask a million questions and try to make the decision for you - YOU are the only one that HAS to deal with this decision for the rest of their life so you need to make sure that you are committed to it. That is really the only advice I can give you - do it for you. Even if you decide not too do what you need to for you otherwise you are doing yourself an injustice because though to me it is beyond worth it - it was one of the hardest things I have done and if I weren't committed it would have been a hell of a trip to take for something I was in half way.
Take care
Lindsey
if you ever just want to talk my email is divawithwings@gmail.com. I don't hit this site all the time so that is the best way to reach me
coltsfan715
New member
Hi there
Just wanted to say I know where you are coming from and can say it is terrifying, scary, upsetting, depressing, aggravating, nerve-racking, numbing, and often leaves you feeling completely helpless. I can also say that coming out the other side will give you a sense of accomplishment, relief, peace, and joy. I had a fairly rapid decline with my health as well. I went for near a decade and had remained very stable at around 60% FEV1 and seemed to be doing "ok". I went out one night played softball with friends and woke up the next day barely able to breathe and coughing up blood. Turned out a had a mucous plug that had caused a partial lung collapse. After that I struggled for a year trying to recover and just didn't. Then I approached my docs about transplant.
I was terrified and wasn't even sure if it was what I wanted. I ultimately decided to go for it and can say I am beyond thankful I did. For me I coped in a way that some people would call denial, but it was what I had to do to deal with it. I had severe anxiety about the whole thing - when do you know it is the right time, the waiting, how sick will I get before I get transplanted and so on. I started making a list of all the things I wanted to do post transplant. I kept it a mental list but each time I would start to panic I would think about my list - and I would read it off in my head and then I would add something to it. It was simple things like post transplant I will be able to laugh without coughing, hug my friends, ride a bike and so on. I gave myself something to look forward too.
I also had one of my surgeons ask me one day (after I had asked him a question) "will the answer change your mind?"I said no and he replied then I don't think you want to know the answer it will just serve to scare you. After that I took that philosophy about all of my transplant stuff. I stopped asking questions because I didn't want to know what all could possibly go wrong, because I was going through with the transplant regardless. I honestly feel this has contributed to my well being post transplant because it is less for me to stress about now.
I will stop for now - but I just wanted to say that Miler is right. You are facing your own mortality - as I told my mom part of the process with transplant is that you are almost mourning yourself. You are slowly saying good bye to the life that you know as it is taken away from you and you are unsure if you are going to get that back. It is completely normal to be scared and worried. If you weren't I would honestly think something was wrong with you.
I wish you the best and if nothing else go to a center and check it out - ask a million questions and try to make the decision for you - YOU are the only one that HAS to deal with this decision for the rest of their life so you need to make sure that you are committed to it. That is really the only advice I can give you - do it for you. Even if you decide not too do what you need to for you otherwise you are doing yourself an injustice because though to me it is beyond worth it - it was one of the hardest things I have done and if I weren't committed it would have been a hell of a trip to take for something I was in half way.
Take care
Lindsey
if you ever just want to talk my email is divawithwings@gmail.com. I don't hit this site all the time so that is the best way to reach me
Just wanted to say I know where you are coming from and can say it is terrifying, scary, upsetting, depressing, aggravating, nerve-racking, numbing, and often leaves you feeling completely helpless. I can also say that coming out the other side will give you a sense of accomplishment, relief, peace, and joy. I had a fairly rapid decline with my health as well. I went for near a decade and had remained very stable at around 60% FEV1 and seemed to be doing "ok". I went out one night played softball with friends and woke up the next day barely able to breathe and coughing up blood. Turned out a had a mucous plug that had caused a partial lung collapse. After that I struggled for a year trying to recover and just didn't. Then I approached my docs about transplant.
I was terrified and wasn't even sure if it was what I wanted. I ultimately decided to go for it and can say I am beyond thankful I did. For me I coped in a way that some people would call denial, but it was what I had to do to deal with it. I had severe anxiety about the whole thing - when do you know it is the right time, the waiting, how sick will I get before I get transplanted and so on. I started making a list of all the things I wanted to do post transplant. I kept it a mental list but each time I would start to panic I would think about my list - and I would read it off in my head and then I would add something to it. It was simple things like post transplant I will be able to laugh without coughing, hug my friends, ride a bike and so on. I gave myself something to look forward too.
I also had one of my surgeons ask me one day (after I had asked him a question) "will the answer change your mind?"I said no and he replied then I don't think you want to know the answer it will just serve to scare you. After that I took that philosophy about all of my transplant stuff. I stopped asking questions because I didn't want to know what all could possibly go wrong, because I was going through with the transplant regardless. I honestly feel this has contributed to my well being post transplant because it is less for me to stress about now.
I will stop for now - but I just wanted to say that Miler is right. You are facing your own mortality - as I told my mom part of the process with transplant is that you are almost mourning yourself. You are slowly saying good bye to the life that you know as it is taken away from you and you are unsure if you are going to get that back. It is completely normal to be scared and worried. If you weren't I would honestly think something was wrong with you.
I wish you the best and if nothing else go to a center and check it out - ask a million questions and try to make the decision for you - YOU are the only one that HAS to deal with this decision for the rest of their life so you need to make sure that you are committed to it. That is really the only advice I can give you - do it for you. Even if you decide not too do what you need to for you otherwise you are doing yourself an injustice because though to me it is beyond worth it - it was one of the hardest things I have done and if I weren't committed it would have been a hell of a trip to take for something I was in half way.
Take care
Lindsey
if you ever just want to talk my email is divawithwings@gmail.com. I don't hit this site all the time so that is the best way to reach me
coltsfan715
New member
Hi there
<br />
<br />Just wanted to say I know where you are coming from and can say it is terrifying, scary, upsetting, depressing, aggravating, nerve-racking, numbing, and often leaves you feeling completely helpless. I can also say that coming out the other side will give you a sense of accomplishment, relief, peace, and joy. I had a fairly rapid decline with my health as well. I went for near a decade and had remained very stable at around 60% FEV1 and seemed to be doing "ok". I went out one night played softball with friends and woke up the next day barely able to breathe and coughing up blood. Turned out a had a mucous plug that had caused a partial lung collapse. After that I struggled for a year trying to recover and just didn't. Then I approached my docs about transplant.
<br />
<br />I was terrified and wasn't even sure if it was what I wanted. I ultimately decided to go for it and can say I am beyond thankful I did. For me I coped in a way that some people would call denial, but it was what I had to do to deal with it. I had severe anxiety about the whole thing - when do you know it is the right time, the waiting, how sick will I get before I get transplanted and so on. I started making a list of all the things I wanted to do post transplant. I kept it a mental list but each time I would start to panic I would think about my list - and I would read it off in my head and then I would add something to it. It was simple things like post transplant I will be able to laugh without coughing, hug my friends, ride a bike and so on. I gave myself something to look forward too.
<br />
<br />I also had one of my surgeons ask me one day (after I had asked him a question) "will the answer change your mind?"I said no and he replied then I don't think you want to know the answer it will just serve to scare you. After that I took that philosophy about all of my transplant stuff. I stopped asking questions because I didn't want to know what all could possibly go wrong, because I was going through with the transplant regardless. I honestly feel this has contributed to my well being post transplant because it is less for me to stress about now.
<br />
<br />I will stop for now - but I just wanted to say that Miler is right. You are facing your own mortality - as I told my mom part of the process with transplant is that you are almost mourning yourself. You are slowly saying good bye to the life that you know as it is taken away from you and you are unsure if you are going to get that back. It is completely normal to be scared and worried. If you weren't I would honestly think something was wrong with you.
<br />
<br />I wish you the best and if nothing else go to a center and check it out - ask a million questions and try to make the decision for you - YOU are the only one that HAS to deal with this decision for the rest of their life so you need to make sure that you are committed to it. That is really the only advice I can give you - do it for you. Even if you decide not too do what you need to for you otherwise you are doing yourself an injustice because though to me it is beyond worth it - it was one of the hardest things I have done and if I weren't committed it would have been a hell of a trip to take for something I was in half way.
<br />
<br />Take care
<br />
<br />Lindsey
<br />
<br />if you ever just want to talk my email is divawithwings@gmail.com. I don't hit this site all the time so that is the best way to reach me
<br />
<br />Just wanted to say I know where you are coming from and can say it is terrifying, scary, upsetting, depressing, aggravating, nerve-racking, numbing, and often leaves you feeling completely helpless. I can also say that coming out the other side will give you a sense of accomplishment, relief, peace, and joy. I had a fairly rapid decline with my health as well. I went for near a decade and had remained very stable at around 60% FEV1 and seemed to be doing "ok". I went out one night played softball with friends and woke up the next day barely able to breathe and coughing up blood. Turned out a had a mucous plug that had caused a partial lung collapse. After that I struggled for a year trying to recover and just didn't. Then I approached my docs about transplant.
<br />
<br />I was terrified and wasn't even sure if it was what I wanted. I ultimately decided to go for it and can say I am beyond thankful I did. For me I coped in a way that some people would call denial, but it was what I had to do to deal with it. I had severe anxiety about the whole thing - when do you know it is the right time, the waiting, how sick will I get before I get transplanted and so on. I started making a list of all the things I wanted to do post transplant. I kept it a mental list but each time I would start to panic I would think about my list - and I would read it off in my head and then I would add something to it. It was simple things like post transplant I will be able to laugh without coughing, hug my friends, ride a bike and so on. I gave myself something to look forward too.
<br />
<br />I also had one of my surgeons ask me one day (after I had asked him a question) "will the answer change your mind?"I said no and he replied then I don't think you want to know the answer it will just serve to scare you. After that I took that philosophy about all of my transplant stuff. I stopped asking questions because I didn't want to know what all could possibly go wrong, because I was going through with the transplant regardless. I honestly feel this has contributed to my well being post transplant because it is less for me to stress about now.
<br />
<br />I will stop for now - but I just wanted to say that Miler is right. You are facing your own mortality - as I told my mom part of the process with transplant is that you are almost mourning yourself. You are slowly saying good bye to the life that you know as it is taken away from you and you are unsure if you are going to get that back. It is completely normal to be scared and worried. If you weren't I would honestly think something was wrong with you.
<br />
<br />I wish you the best and if nothing else go to a center and check it out - ask a million questions and try to make the decision for you - YOU are the only one that HAS to deal with this decision for the rest of their life so you need to make sure that you are committed to it. That is really the only advice I can give you - do it for you. Even if you decide not too do what you need to for you otherwise you are doing yourself an injustice because though to me it is beyond worth it - it was one of the hardest things I have done and if I weren't committed it would have been a hell of a trip to take for something I was in half way.
<br />
<br />Take care
<br />
<br />Lindsey
<br />
<br />if you ever just want to talk my email is divawithwings@gmail.com. I don't hit this site all the time so that is the best way to reach me