Meeting with the transplant team for the first time...question?

[arche4life]

So I am meeting with my potential transplant team for the first time in October and to say I am a little bit nervous is a rediculous understatement.

I know they are going to ask me tones of questions (especially since I just got an 8 page medical questionaire in the mail from them and it's basically like a body cavity search in paper form) and I'm really worried about their reaction to my responses to their questions.

What I mean is obviously I don't want to come off like a total hypocondriach and act like I am dying but at the same time I am worried that because I am still able to do some basic things, like go to school they won't consider listing me, or they will "keep an eye" on me, like some people say they will. I really really really want to get on the list cause I am sick and I want my life back. Right now I really believe that to a certain extent it is my brain is pushing my body through life, if you know what I mean. Obviously I am going to be completely honest with them about everything cause thats the only thing I can do, I'm just really really worried. I kind of feel like I'm going to be judged negatively cause I still go to school and am not "sick enough"

Any thoughts? What was everyone elses first appointments like? What kind of questions did they ask?

 

[arche4life]

So I am meeting with my potential transplant team for the first time in October and to say I am a little bit nervous is a rediculous understatement.

I know they are going to ask me tones of questions (especially since I just got an 8 page medical questionaire in the mail from them and it's basically like a body cavity search in paper form) and I'm really worried about their reaction to my responses to their questions.

What I mean is obviously I don't want to come off like a total hypocondriach and act like I am dying but at the same time I am worried that because I am still able to do some basic things, like go to school they won't consider listing me, or they will "keep an eye" on me, like some people say they will. I really really really want to get on the list cause I am sick and I want my life back. Right now I really believe that to a certain extent it is my brain is pushing my body through life, if you know what I mean. Obviously I am going to be completely honest with them about everything cause thats the only thing I can do, I'm just really really worried. I kind of feel like I'm going to be judged negatively cause I still go to school and am not "sick enough"

Any thoughts? What was everyone elses first appointments like? What kind of questions did they ask?

 

[arche4life]

So I am meeting with my potential transplant team for the first time in October and to say I am a little bit nervous is a rediculous understatement.

I know they are going to ask me tones of questions (especially since I just got an 8 page medical questionaire in the mail from them and it's basically like a body cavity search in paper form) and I'm really worried about their reaction to my responses to their questions.

What I mean is obviously I don't want to come off like a total hypocondriach and act like I am dying but at the same time I am worried that because I am still able to do some basic things, like go to school they won't consider listing me, or they will "keep an eye" on me, like some people say they will. I really really really want to get on the list cause I am sick and I want my life back. Right now I really believe that to a certain extent it is my brain is pushing my body through life, if you know what I mean. Obviously I am going to be completely honest with them about everything cause thats the only thing I can do, I'm just really really worried. I kind of feel like I'm going to be judged negatively cause I still go to school and am not "sick enough"

Any thoughts? What was everyone elses first appointments like? What kind of questions did they ask?

 

[arche4life]

So I am meeting with my potential transplant team for the first time in October and to say I am a little bit nervous is a rediculous understatement.

I know they are going to ask me tones of questions (especially since I just got an 8 page medical questionaire in the mail from them and it's basically like a body cavity search in paper form) and I'm really worried about their reaction to my responses to their questions.

What I mean is obviously I don't want to come off like a total hypocondriach and act like I am dying but at the same time I am worried that because I am still able to do some basic things, like go to school they won't consider listing me, or they will "keep an eye" on me, like some people say they will. I really really really want to get on the list cause I am sick and I want my life back. Right now I really believe that to a certain extent it is my brain is pushing my body through life, if you know what I mean. Obviously I am going to be completely honest with them about everything cause thats the only thing I can do, I'm just really really worried. I kind of feel like I'm going to be judged negatively cause I still go to school and am not "sick enough"

Any thoughts? What was everyone elses first appointments like? What kind of questions did they ask?

 

[arche4life]

So I am meeting with my potential transplant team for the first time in October and to say I am a little bit nervous is a rediculous understatement.
<br />
<br />I know they are going to ask me tones of questions (especially since I just got an 8 page medical questionaire in the mail from them and it's basically like a body cavity search in paper form) and I'm really worried about their reaction to my responses to their questions.
<br />
<br />What I mean is obviously I don't want to come off like a total hypocondriach and act like I am dying but at the same time I am worried that because I am still able to do some basic things, like go to school they won't consider listing me, or they will "keep an eye" on me, like some people say they will. I really really really want to get on the list cause I am sick and I want my life back. Right now I really believe that to a certain extent it is my brain is pushing my body through life, if you know what I mean. Obviously I am going to be completely honest with them about everything cause thats the only thing I can do, I'm just really really worried. I kind of feel like I'm going to be judged negatively cause I still go to school and am not "sick enough"
<br />
<br />Any thoughts? What was everyone elses first appointments like? What kind of questions did they ask?

 

[coltsfan715]

Don't let that bother you - your going to school. When I first went to my transplant center I wasn't on O2 and I thought I was going to be told I was too healthy. They looked at me and basically told me I was as sick as I could get without being in dire need. I was evaluated about 2 months later and transplanted about 4months later.

They are going to run so many tests that regardless of whether or not you are going to school if you are sick enough to need a transplant you will be listed. If you are not sick enough according to the tests then you may not be listed right away.

Basically their decision isn't going to be based solely on your going to college. There is so much more too it than that.

Just go to the appointment and don't expect anything - I know it is hard but just try to go into it hoping for a good transplant team is all you can do. Hope that you feel comfortable and trust the people you are dealing with but beyond that the decision is out of your hands. It sucks beyond belief that ultimately your life changing experience is going to depend on the opinions of others but that is how it is.

Best of Luck to you and as corny as it sounds just remember that when you are meant to get listed you will get listed and when you are meant to be transplanted you will be transplanted.

Lindsey

 

[coltsfan715]

Don't let that bother you - your going to school. When I first went to my transplant center I wasn't on O2 and I thought I was going to be told I was too healthy. They looked at me and basically told me I was as sick as I could get without being in dire need. I was evaluated about 2 months later and transplanted about 4months later.

They are going to run so many tests that regardless of whether or not you are going to school if you are sick enough to need a transplant you will be listed. If you are not sick enough according to the tests then you may not be listed right away.

Basically their decision isn't going to be based solely on your going to college. There is so much more too it than that.

Just go to the appointment and don't expect anything - I know it is hard but just try to go into it hoping for a good transplant team is all you can do. Hope that you feel comfortable and trust the people you are dealing with but beyond that the decision is out of your hands. It sucks beyond belief that ultimately your life changing experience is going to depend on the opinions of others but that is how it is.

Best of Luck to you and as corny as it sounds just remember that when you are meant to get listed you will get listed and when you are meant to be transplanted you will be transplanted.

Lindsey

 

[coltsfan715]

Don't let that bother you - your going to school. When I first went to my transplant center I wasn't on O2 and I thought I was going to be told I was too healthy. They looked at me and basically told me I was as sick as I could get without being in dire need. I was evaluated about 2 months later and transplanted about 4months later.

They are going to run so many tests that regardless of whether or not you are going to school if you are sick enough to need a transplant you will be listed. If you are not sick enough according to the tests then you may not be listed right away.

Basically their decision isn't going to be based solely on your going to college. There is so much more too it than that.

Just go to the appointment and don't expect anything - I know it is hard but just try to go into it hoping for a good transplant team is all you can do. Hope that you feel comfortable and trust the people you are dealing with but beyond that the decision is out of your hands. It sucks beyond belief that ultimately your life changing experience is going to depend on the opinions of others but that is how it is.

Best of Luck to you and as corny as it sounds just remember that when you are meant to get listed you will get listed and when you are meant to be transplanted you will be transplanted.

Lindsey

 

[coltsfan715]

Don't let that bother you - your going to school. When I first went to my transplant center I wasn't on O2 and I thought I was going to be told I was too healthy. They looked at me and basically told me I was as sick as I could get without being in dire need. I was evaluated about 2 months later and transplanted about 4months later.

They are going to run so many tests that regardless of whether or not you are going to school if you are sick enough to need a transplant you will be listed. If you are not sick enough according to the tests then you may not be listed right away.

Basically their decision isn't going to be based solely on your going to college. There is so much more too it than that.

Just go to the appointment and don't expect anything - I know it is hard but just try to go into it hoping for a good transplant team is all you can do. Hope that you feel comfortable and trust the people you are dealing with but beyond that the decision is out of your hands. It sucks beyond belief that ultimately your life changing experience is going to depend on the opinions of others but that is how it is.

Best of Luck to you and as corny as it sounds just remember that when you are meant to get listed you will get listed and when you are meant to be transplanted you will be transplanted.

Lindsey

 

[coltsfan715]

Don't let that bother you - your going to school. When I first went to my transplant center I wasn't on O2 and I thought I was going to be told I was too healthy. They looked at me and basically told me I was as sick as I could get without being in dire need. I was evaluated about 2 months later and transplanted about 4months later.
<br />
<br />They are going to run so many tests that regardless of whether or not you are going to school if you are sick enough to need a transplant you will be listed. If you are not sick enough according to the tests then you may not be listed right away.
<br />
<br />Basically their decision isn't going to be based solely on your going to college. There is so much more too it than that.
<br />
<br />Just go to the appointment and don't expect anything - I know it is hard but just try to go into it hoping for a good transplant team is all you can do. Hope that you feel comfortable and trust the people you are dealing with but beyond that the decision is out of your hands. It sucks beyond belief that ultimately your life changing experience is going to depend on the opinions of others but that is how it is.
<br />
<br />Best of Luck to you and as corny as it sounds just remember that when you are meant to get listed you will get listed and when you are meant to be transplanted you will be transplanted.
<br />
<br />Lindsey
<br />

 

[Transplantmommy]

I agree with Lindsey, I don't think it will matter. Our bodies get so used to having a decrease in lung function that at some point, we don't really notice it much and keep going on with our lives as normally as possible.

I wasn't going to school when I went to Cleveland Clinic for the first time but I was still working full time and I wasn't on O2 yet. My FEV1 was at 40% when I was first evaluated and yes, I was told that I was likelu too healthy to be put on the transplant list at that time, but overall, it didn't matter to me because I found out almost two months later that I was 9 weeks pregnant.

I had the baby in January 2006 and went right back to the Cleveland Clinic and we started doing all of the testing to get me listed for the transplant. They didn't tell me that I was too healthy for a transplant because I my body endured a pregnancy. They actually told me that they were happy that I went through with the pregnancy because it showed them that I was strong enough to handle a double lung and liver transplant.

There are a lot of people who are still going on with their lives when they are listed and then called for the transplant. That being said, I would say try not to worry too much about it. The docs will do all sorts of tests and take the way your lungs work overall and how they look into consideration.

 

[Transplantmommy]

I agree with Lindsey, I don't think it will matter. Our bodies get so used to having a decrease in lung function that at some point, we don't really notice it much and keep going on with our lives as normally as possible.

I wasn't going to school when I went to Cleveland Clinic for the first time but I was still working full time and I wasn't on O2 yet. My FEV1 was at 40% when I was first evaluated and yes, I was told that I was likelu too healthy to be put on the transplant list at that time, but overall, it didn't matter to me because I found out almost two months later that I was 9 weeks pregnant.

I had the baby in January 2006 and went right back to the Cleveland Clinic and we started doing all of the testing to get me listed for the transplant. They didn't tell me that I was too healthy for a transplant because I my body endured a pregnancy. They actually told me that they were happy that I went through with the pregnancy because it showed them that I was strong enough to handle a double lung and liver transplant.

There are a lot of people who are still going on with their lives when they are listed and then called for the transplant. That being said, I would say try not to worry too much about it. The docs will do all sorts of tests and take the way your lungs work overall and how they look into consideration.

 

[Transplantmommy]

I agree with Lindsey, I don't think it will matter. Our bodies get so used to having a decrease in lung function that at some point, we don't really notice it much and keep going on with our lives as normally as possible.

I wasn't going to school when I went to Cleveland Clinic for the first time but I was still working full time and I wasn't on O2 yet. My FEV1 was at 40% when I was first evaluated and yes, I was told that I was likelu too healthy to be put on the transplant list at that time, but overall, it didn't matter to me because I found out almost two months later that I was 9 weeks pregnant.

I had the baby in January 2006 and went right back to the Cleveland Clinic and we started doing all of the testing to get me listed for the transplant. They didn't tell me that I was too healthy for a transplant because I my body endured a pregnancy. They actually told me that they were happy that I went through with the pregnancy because it showed them that I was strong enough to handle a double lung and liver transplant.

There are a lot of people who are still going on with their lives when they are listed and then called for the transplant. That being said, I would say try not to worry too much about it. The docs will do all sorts of tests and take the way your lungs work overall and how they look into consideration.

 

[Transplantmommy]

I agree with Lindsey, I don't think it will matter. Our bodies get so used to having a decrease in lung function that at some point, we don't really notice it much and keep going on with our lives as normally as possible.

I wasn't going to school when I went to Cleveland Clinic for the first time but I was still working full time and I wasn't on O2 yet. My FEV1 was at 40% when I was first evaluated and yes, I was told that I was likelu too healthy to be put on the transplant list at that time, but overall, it didn't matter to me because I found out almost two months later that I was 9 weeks pregnant.

I had the baby in January 2006 and went right back to the Cleveland Clinic and we started doing all of the testing to get me listed for the transplant. They didn't tell me that I was too healthy for a transplant because I my body endured a pregnancy. They actually told me that they were happy that I went through with the pregnancy because it showed them that I was strong enough to handle a double lung and liver transplant.

There are a lot of people who are still going on with their lives when they are listed and then called for the transplant. That being said, I would say try not to worry too much about it. The docs will do all sorts of tests and take the way your lungs work overall and how they look into consideration.

 

[Transplantmommy]

I agree with Lindsey, I don't think it will matter. Our bodies get so used to having a decrease in lung function that at some point, we don't really notice it much and keep going on with our lives as normally as possible.
<br />
<br />I wasn't going to school when I went to Cleveland Clinic for the first time but I was still working full time and I wasn't on O2 yet. My FEV1 was at 40% when I was first evaluated and yes, I was told that I was likelu too healthy to be put on the transplant list at that time, but overall, it didn't matter to me because I found out almost two months later that I was 9 weeks pregnant.
<br />
<br />I had the baby in January 2006 and went right back to the Cleveland Clinic and we started doing all of the testing to get me listed for the transplant. They didn't tell me that I was too healthy for a transplant because I my body endured a pregnancy. They actually told me that they were happy that I went through with the pregnancy because it showed them that I was strong enough to handle a double lung and liver transplant.
<br />
<br />There are a lot of people who are still going on with their lives when they are listed and then called for the transplant. That being said, I would say try not to worry too much about it. The docs will do all sorts of tests and take the way your lungs work overall and how they look into consideration.