Initial Transplant evaluation

NYCLawGirl

New member
Hi there. I don't know if people will be able to help me out here or not, but it can't hurt to ask, right? My doctor recommended a month or so ago that I get an initial evaluation for tx - mostly since my FEV1s have dropped dramatically in the past couple of years. I am still at a 35-45% range, so not quite at the point where I need to get on the "active" list, but she thinks it is a good idea to take that first step now, while I am relatively healthy and independent and able to handle the process. So I agreed, and now today my insurance calls and a nurse with Cigna tells me she will be my "transplant liaison" and that I am approved for evaluation. Great news! Only it means now I have to schedule the actual testing and I am SO nervous! Can anyone tell me what to expect and what the transplant evaluators test for? It seems so weird to me - the whole process of determining who is a "good" candidate and who is not - esp with a disease like CF where we have had it our whole lives.

I am a compliant patient, I try hard to take care of myself, but I also work full time and really value trying to lead as "normal" a life as possible. Will they hold that against me? What about past mistakes (I had a brief noncompliant period as a teen - no smoking or anything really dumb, just didn't want to do my nebs or airway clearance like an idiot). Also I really struggle with my weight and I know that is a consideration. I am so nervous that they will turn me away for no reason or for something I can't control.

Sorry for being a total spazz about all this. It's a lot to handle for someone who's always been pretty healthy (or for anyone, really). I get that they want to make sure people will take care of the organ once they get it, but I also feel really wary of a process of healthy doctors essentially judging whether I should be allowed to get in line for what might someday be the only remaining treatment option for me. Does anyone else feel that way or amy I just being a baby?

Fingers crossed that I don't actually need the TX anytime soon, but still it's very real to me now...
 

NYCLawGirl

New member
Hi there. I don't know if people will be able to help me out here or not, but it can't hurt to ask, right? My doctor recommended a month or so ago that I get an initial evaluation for tx - mostly since my FEV1s have dropped dramatically in the past couple of years. I am still at a 35-45% range, so not quite at the point where I need to get on the "active" list, but she thinks it is a good idea to take that first step now, while I am relatively healthy and independent and able to handle the process. So I agreed, and now today my insurance calls and a nurse with Cigna tells me she will be my "transplant liaison" and that I am approved for evaluation. Great news! Only it means now I have to schedule the actual testing and I am SO nervous! Can anyone tell me what to expect and what the transplant evaluators test for? It seems so weird to me - the whole process of determining who is a "good" candidate and who is not - esp with a disease like CF where we have had it our whole lives.

I am a compliant patient, I try hard to take care of myself, but I also work full time and really value trying to lead as "normal" a life as possible. Will they hold that against me? What about past mistakes (I had a brief noncompliant period as a teen - no smoking or anything really dumb, just didn't want to do my nebs or airway clearance like an idiot). Also I really struggle with my weight and I know that is a consideration. I am so nervous that they will turn me away for no reason or for something I can't control.

Sorry for being a total spazz about all this. It's a lot to handle for someone who's always been pretty healthy (or for anyone, really). I get that they want to make sure people will take care of the organ once they get it, but I also feel really wary of a process of healthy doctors essentially judging whether I should be allowed to get in line for what might someday be the only remaining treatment option for me. Does anyone else feel that way or amy I just being a baby?

Fingers crossed that I don't actually need the TX anytime soon, but still it's very real to me now...
 

NYCLawGirl

New member
Hi there. I don't know if people will be able to help me out here or not, but it can't hurt to ask, right? My doctor recommended a month or so ago that I get an initial evaluation for tx - mostly since my FEV1s have dropped dramatically in the past couple of years. I am still at a 35-45% range, so not quite at the point where I need to get on the "active" list, but she thinks it is a good idea to take that first step now, while I am relatively healthy and independent and able to handle the process. So I agreed, and now today my insurance calls and a nurse with Cigna tells me she will be my "transplant liaison" and that I am approved for evaluation. Great news! Only it means now I have to schedule the actual testing and I am SO nervous! Can anyone tell me what to expect and what the transplant evaluators test for? It seems so weird to me - the whole process of determining who is a "good" candidate and who is not - esp with a disease like CF where we have had it our whole lives.

I am a compliant patient, I try hard to take care of myself, but I also work full time and really value trying to lead as "normal" a life as possible. Will they hold that against me? What about past mistakes (I had a brief noncompliant period as a teen - no smoking or anything really dumb, just didn't want to do my nebs or airway clearance like an idiot). Also I really struggle with my weight and I know that is a consideration. I am so nervous that they will turn me away for no reason or for something I can't control.

Sorry for being a total spazz about all this. It's a lot to handle for someone who's always been pretty healthy (or for anyone, really). I get that they want to make sure people will take care of the organ once they get it, but I also feel really wary of a process of healthy doctors essentially judging whether I should be allowed to get in line for what might someday be the only remaining treatment option for me. Does anyone else feel that way or amy I just being a baby?

Fingers crossed that I don't actually need the TX anytime soon, but still it's very real to me now...
 

NYCLawGirl

New member
Hi there. I don't know if people will be able to help me out here or not, but it can't hurt to ask, right? My doctor recommended a month or so ago that I get an initial evaluation for tx - mostly since my FEV1s have dropped dramatically in the past couple of years. I am still at a 35-45% range, so not quite at the point where I need to get on the "active" list, but she thinks it is a good idea to take that first step now, while I am relatively healthy and independent and able to handle the process. So I agreed, and now today my insurance calls and a nurse with Cigna tells me she will be my "transplant liaison" and that I am approved for evaluation. Great news! Only it means now I have to schedule the actual testing and I am SO nervous! Can anyone tell me what to expect and what the transplant evaluators test for? It seems so weird to me - the whole process of determining who is a "good" candidate and who is not - esp with a disease like CF where we have had it our whole lives.

I am a compliant patient, I try hard to take care of myself, but I also work full time and really value trying to lead as "normal" a life as possible. Will they hold that against me? What about past mistakes (I had a brief noncompliant period as a teen - no smoking or anything really dumb, just didn't want to do my nebs or airway clearance like an idiot). Also I really struggle with my weight and I know that is a consideration. I am so nervous that they will turn me away for no reason or for something I can't control.

Sorry for being a total spazz about all this. It's a lot to handle for someone who's always been pretty healthy (or for anyone, really). I get that they want to make sure people will take care of the organ once they get it, but I also feel really wary of a process of healthy doctors essentially judging whether I should be allowed to get in line for what might someday be the only remaining treatment option for me. Does anyone else feel that way or amy I just being a baby?

Fingers crossed that I don't actually need the TX anytime soon, but still it's very real to me now...
 

NYCLawGirl

New member
Hi there. I don't know if people will be able to help me out here or not, but it can't hurt to ask, right? My doctor recommended a month or so ago that I get an initial evaluation for tx - mostly since my FEV1s have dropped dramatically in the past couple of years. I am still at a 35-45% range, so not quite at the point where I need to get on the "active" list, but she thinks it is a good idea to take that first step now, while I am relatively healthy and independent and able to handle the process. So I agreed, and now today my insurance calls and a nurse with Cigna tells me she will be my "transplant liaison" and that I am approved for evaluation. Great news! Only it means now I have to schedule the actual testing and I am SO nervous! Can anyone tell me what to expect and what the transplant evaluators test for? It seems so weird to me - the whole process of determining who is a "good" candidate and who is not - esp with a disease like CF where we have had it our whole lives.

I am a compliant patient, I try hard to take care of myself, but I also work full time and really value trying to lead as "normal" a life as possible. Will they hold that against me? What about past mistakes (I had a brief noncompliant period as a teen - no smoking or anything really dumb, just didn't want to do my nebs or airway clearance like an idiot). Also I really struggle with my weight and I know that is a consideration. I am so nervous that they will turn me away for no reason or for something I can't control.

Sorry for being a total spazz about all this. It's a lot to handle for someone who's always been pretty healthy (or for anyone, really). I get that they want to make sure people will take care of the organ once they get it, but I also feel really wary of a process of healthy doctors essentially judging whether I should be allowed to get in line for what might someday be the only remaining treatment option for me. Does anyone else feel that way or amy I just being a baby?

Fingers crossed that I don't actually need the TX anytime soon, but still it's very real to me now...
 

ktsmom

New member
Lindsey (coltsfan7153) wrote with incredible detail about her evaluation process. This should be a link to that part of her blog. Best wishes to you.


<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/categories.cfm?catid=1974&flcache=4129312&entercat=y
">http://blogs.cysticfibrosis.co...he=4129312&entercat=y
</a>
 

ktsmom

New member
Lindsey (coltsfan7153) wrote with incredible detail about her evaluation process. This should be a link to that part of her blog. Best wishes to you.


<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/categories.cfm?catid=1974&flcache=4129312&entercat=y
">http://blogs.cysticfibrosis.co...he=4129312&entercat=y
</a>
 

ktsmom

New member
Lindsey (coltsfan7153) wrote with incredible detail about her evaluation process. This should be a link to that part of her blog. Best wishes to you.


<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/categories.cfm?catid=1974&flcache=4129312&entercat=y
">http://blogs.cysticfibrosis.co...he=4129312&entercat=y
</a>
 

ktsmom

New member
Lindsey (coltsfan7153) wrote with incredible detail about her evaluation process. This should be a link to that part of her blog. Best wishes to you.


<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/categories.cfm?catid=1974&flcache=4129312&entercat=y
">http://blogs.cysticfibrosis.co...he=4129312&entercat=y
</a>
 

ktsmom

New member
Lindsey (coltsfan7153) wrote with incredible detail about her evaluation process. This should be a link to that part of her blog. Best wishes to you.


<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/categories.cfm?catid=1974&flcache=4129312&entercat=y
">http://blogs.cysticfibrosis.co...he=4129312&entercat=y
</a>
 

Skye

New member
Piper,
We sound similar in our current situation. I will privately PM you and share my story.
Karen
 

Skye

New member
Piper,
We sound similar in our current situation. I will privately PM you and share my story.
Karen
 

Skye

New member
Piper,
We sound similar in our current situation. I will privately PM you and share my story.
Karen
 

Skye

New member
Piper,
We sound similar in our current situation. I will privately PM you and share my story.
Karen
 

Skye

New member
Piper,
We sound similar in our current situation. I will privately PM you and share my story.
Karen
 

coltsfan715

New member
Hi Piper,

I think the nervousness you have is completely normal - and that is exactly why your doc is reccommending you NOW while you are NOT in dire need of a transplant. You are able to take your time to some extent going into all of this.

I know for me I had the same "non compliant" teen years that I am sure most every CF patient has. I was not even asked about it. They take into account your recent history and whether or not you have shown the ability to take care of yourself consistently - not what you were like at 16 (if you are not 25-26). I would not worry about that.

The test ALOT of things and by my understanding different centers or different transplant regions require or test for different things. I had a Bone Density Scan, Right Heart Catheterization with exercise study, V/Q perfusion Scan, EKG, ECG, 6 minute walk test, labs, labs and more labs, urine collection, stool collection, xraqys, pfts (the mammer jammer PFTs not just the little deep breath and blow ones). I had to have a GYN consult being a female as well.

One thing I would recommend is that you write down EVERY question you have for THEM. Feel free to ask your questions here, but write them down and ask the docs at the trasnsplant center as well. I had my first appointment with the transplant center in Dec 2006 and I spent an hour with the nurse and an hour with the doc asking questions. Then I asked just as many when I went in for me evaluation a few months later.

Don't feel bad about asking questions - they should understand and quite honestly if they give you a hard time I would think about finding a new center, but that is just me personally. You just need to make sure you have a place that is going to care if you have questions and is going to care about helping you understand what is going on. I am 9 months post transplant and I still ask questions everytime I go to the doc. Some of them are random that really don't seem to pertain to me because I am just naturally curious and others are specifically because of concerns that I have.

If you ever want to talk feel free to email me.

My email address is Divawithwings@gmail.com

Best Wishes,
Lindsey
 

coltsfan715

New member
Hi Piper,

I think the nervousness you have is completely normal - and that is exactly why your doc is reccommending you NOW while you are NOT in dire need of a transplant. You are able to take your time to some extent going into all of this.

I know for me I had the same "non compliant" teen years that I am sure most every CF patient has. I was not even asked about it. They take into account your recent history and whether or not you have shown the ability to take care of yourself consistently - not what you were like at 16 (if you are not 25-26). I would not worry about that.

The test ALOT of things and by my understanding different centers or different transplant regions require or test for different things. I had a Bone Density Scan, Right Heart Catheterization with exercise study, V/Q perfusion Scan, EKG, ECG, 6 minute walk test, labs, labs and more labs, urine collection, stool collection, xraqys, pfts (the mammer jammer PFTs not just the little deep breath and blow ones). I had to have a GYN consult being a female as well.

One thing I would recommend is that you write down EVERY question you have for THEM. Feel free to ask your questions here, but write them down and ask the docs at the trasnsplant center as well. I had my first appointment with the transplant center in Dec 2006 and I spent an hour with the nurse and an hour with the doc asking questions. Then I asked just as many when I went in for me evaluation a few months later.

Don't feel bad about asking questions - they should understand and quite honestly if they give you a hard time I would think about finding a new center, but that is just me personally. You just need to make sure you have a place that is going to care if you have questions and is going to care about helping you understand what is going on. I am 9 months post transplant and I still ask questions everytime I go to the doc. Some of them are random that really don't seem to pertain to me because I am just naturally curious and others are specifically because of concerns that I have.

If you ever want to talk feel free to email me.

My email address is Divawithwings@gmail.com

Best Wishes,
Lindsey
 

coltsfan715

New member
Hi Piper,

I think the nervousness you have is completely normal - and that is exactly why your doc is reccommending you NOW while you are NOT in dire need of a transplant. You are able to take your time to some extent going into all of this.

I know for me I had the same "non compliant" teen years that I am sure most every CF patient has. I was not even asked about it. They take into account your recent history and whether or not you have shown the ability to take care of yourself consistently - not what you were like at 16 (if you are not 25-26). I would not worry about that.

The test ALOT of things and by my understanding different centers or different transplant regions require or test for different things. I had a Bone Density Scan, Right Heart Catheterization with exercise study, V/Q perfusion Scan, EKG, ECG, 6 minute walk test, labs, labs and more labs, urine collection, stool collection, xraqys, pfts (the mammer jammer PFTs not just the little deep breath and blow ones). I had to have a GYN consult being a female as well.

One thing I would recommend is that you write down EVERY question you have for THEM. Feel free to ask your questions here, but write them down and ask the docs at the trasnsplant center as well. I had my first appointment with the transplant center in Dec 2006 and I spent an hour with the nurse and an hour with the doc asking questions. Then I asked just as many when I went in for me evaluation a few months later.

Don't feel bad about asking questions - they should understand and quite honestly if they give you a hard time I would think about finding a new center, but that is just me personally. You just need to make sure you have a place that is going to care if you have questions and is going to care about helping you understand what is going on. I am 9 months post transplant and I still ask questions everytime I go to the doc. Some of them are random that really don't seem to pertain to me because I am just naturally curious and others are specifically because of concerns that I have.

If you ever want to talk feel free to email me.

My email address is Divawithwings@gmail.com

Best Wishes,
Lindsey
 

coltsfan715

New member
Hi Piper,

I think the nervousness you have is completely normal - and that is exactly why your doc is reccommending you NOW while you are NOT in dire need of a transplant. You are able to take your time to some extent going into all of this.

I know for me I had the same "non compliant" teen years that I am sure most every CF patient has. I was not even asked about it. They take into account your recent history and whether or not you have shown the ability to take care of yourself consistently - not what you were like at 16 (if you are not 25-26). I would not worry about that.

The test ALOT of things and by my understanding different centers or different transplant regions require or test for different things. I had a Bone Density Scan, Right Heart Catheterization with exercise study, V/Q perfusion Scan, EKG, ECG, 6 minute walk test, labs, labs and more labs, urine collection, stool collection, xraqys, pfts (the mammer jammer PFTs not just the little deep breath and blow ones). I had to have a GYN consult being a female as well.

One thing I would recommend is that you write down EVERY question you have for THEM. Feel free to ask your questions here, but write them down and ask the docs at the trasnsplant center as well. I had my first appointment with the transplant center in Dec 2006 and I spent an hour with the nurse and an hour with the doc asking questions. Then I asked just as many when I went in for me evaluation a few months later.

Don't feel bad about asking questions - they should understand and quite honestly if they give you a hard time I would think about finding a new center, but that is just me personally. You just need to make sure you have a place that is going to care if you have questions and is going to care about helping you understand what is going on. I am 9 months post transplant and I still ask questions everytime I go to the doc. Some of them are random that really don't seem to pertain to me because I am just naturally curious and others are specifically because of concerns that I have.

If you ever want to talk feel free to email me.

My email address is Divawithwings@gmail.com

Best Wishes,
Lindsey
 

coltsfan715

New member
Hi Piper,

I think the nervousness you have is completely normal - and that is exactly why your doc is reccommending you NOW while you are NOT in dire need of a transplant. You are able to take your time to some extent going into all of this.

I know for me I had the same "non compliant" teen years that I am sure most every CF patient has. I was not even asked about it. They take into account your recent history and whether or not you have shown the ability to take care of yourself consistently - not what you were like at 16 (if you are not 25-26). I would not worry about that.

The test ALOT of things and by my understanding different centers or different transplant regions require or test for different things. I had a Bone Density Scan, Right Heart Catheterization with exercise study, V/Q perfusion Scan, EKG, ECG, 6 minute walk test, labs, labs and more labs, urine collection, stool collection, xraqys, pfts (the mammer jammer PFTs not just the little deep breath and blow ones). I had to have a GYN consult being a female as well.

One thing I would recommend is that you write down EVERY question you have for THEM. Feel free to ask your questions here, but write them down and ask the docs at the trasnsplant center as well. I had my first appointment with the transplant center in Dec 2006 and I spent an hour with the nurse and an hour with the doc asking questions. Then I asked just as many when I went in for me evaluation a few months later.

Don't feel bad about asking questions - they should understand and quite honestly if they give you a hard time I would think about finding a new center, but that is just me personally. You just need to make sure you have a place that is going to care if you have questions and is going to care about helping you understand what is going on. I am 9 months post transplant and I still ask questions everytime I go to the doc. Some of them are random that really don't seem to pertain to me because I am just naturally curious and others are specifically because of concerns that I have.

If you ever want to talk feel free to email me.

My email address is Divawithwings@gmail.com

Best Wishes,
Lindsey
 
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