Transplant and FEV1

Grendel · Mar 16, 2008

My question is specific in that since the new Tx selection process what are the statistics of when a CFer gets a Tx. Usually at what FEV1 level, has it been observed, does a CF patient get a Tx? Is it usually at FEV1 levels of 8%, 15%, 22%? I am well aware that at around 30% you get vetted to be on the Transplant List, though as the list works you can't get a Tx till your lungs get bad enough that you get pushed to the top of the recipient list. I am not interested in how long it takes once you are on the list, just what the average FEV1 is upon getting the Tx-surgery.

Thanks.
Grendel

Grendel · Mar 16, 2008

My question is specific in that since the new Tx selection process what are the statistics of when a CFer gets a Tx. Usually at what FEV1 level, has it been observed, does a CF patient get a Tx? Is it usually at FEV1 levels of 8%, 15%, 22%? I am well aware that at around 30% you get vetted to be on the Transplant List, though as the list works you can't get a Tx till your lungs get bad enough that you get pushed to the top of the recipient list. I am not interested in how long it takes once you are on the list, just what the average FEV1 is upon getting the Tx-surgery.

Thanks.
Grendel

Grendel · Mar 16, 2008

My question is specific in that since the new Tx selection process what are the statistics of when a CFer gets a Tx. Usually at what FEV1 level, has it been observed, does a CF patient get a Tx? Is it usually at FEV1 levels of 8%, 15%, 22%? I am well aware that at around 30% you get vetted to be on the Transplant List, though as the list works you can't get a Tx till your lungs get bad enough that you get pushed to the top of the recipient list. I am not interested in how long it takes once you are on the list, just what the average FEV1 is upon getting the Tx-surgery.

Thanks.
Grendel

Grendel · Mar 16, 2008

My question is specific in that since the new Tx selection process what are the statistics of when a CFer gets a Tx. Usually at what FEV1 level, has it been observed, does a CF patient get a Tx? Is it usually at FEV1 levels of 8%, 15%, 22%? I am well aware that at around 30% you get vetted to be on the Transplant List, though as the list works you can't get a Tx till your lungs get bad enough that you get pushed to the top of the recipient list. I am not interested in how long it takes once you are on the list, just what the average FEV1 is upon getting the Tx-surgery.

Thanks.
Grendel

Grendel · Mar 16, 2008

My question is specific in that since the new Tx selection process what are the statistics of when a CFer gets a Tx. Usually at what FEV1 level, has it been observed, does a CF patient get a Tx? Is it usually at FEV1 levels of 8%, 15%, 22%? I am well aware that at around 30% you get vetted to be on the Transplant List, though as the list works you can't get a Tx till your lungs get bad enough that you get pushed to the top of the recipient list. I am not interested in how long it takes once you are on the list, just what the average FEV1 is upon getting the Tx-surgery.
 
 Thanks.
 Grendel

coltsfan715 · Mar 16, 2008

You can't really say as it depends on more than just the FEV1 of a patient as to whether or not they are moved up the list.

I know for my I was transplanted at 22%. I was listed when I was at 29% FEV1. THat being said I also know of others at my center that were vented when they were called or in their teens when they were called.

There are things that they consider like heart functionality - meaning do you have pulmonary hypertension and if so the severity. Also they may choose to wait a bit longer for some patients if it is possible to get a better match for them in regards to viral status - meaning if the recipient is negative for CMV (Cytomegalovirus) and EBV (Epstein Barr Virus) then they may try and wait longer to find a donor that is negative for both.

There is no clearcut you are going to be transplanted around this FEV1 thing that is in place. I know from talking to my docs that they LIKE and PREFER to transplant patients when they are in the 15-25% range because you are sick enough to be in dire need but not so sick that recovery will be excessively hard on you.

I know that is alot of stuff but I just wanted to put that out there because the way your question was worded seemed that you just wanted an FEV1 but there is more to it than that. Also something that can move a person up is how resistant their bugs are to treatment and how often or long they are needing IV treatment for - at least that is what I was told by some coordinators at my center.

Take Care,
Lindsey

coltsfan715 · Mar 16, 2008

You can't really say as it depends on more than just the FEV1 of a patient as to whether or not they are moved up the list.

I know for my I was transplanted at 22%. I was listed when I was at 29% FEV1. THat being said I also know of others at my center that were vented when they were called or in their teens when they were called.

There are things that they consider like heart functionality - meaning do you have pulmonary hypertension and if so the severity. Also they may choose to wait a bit longer for some patients if it is possible to get a better match for them in regards to viral status - meaning if the recipient is negative for CMV (Cytomegalovirus) and EBV (Epstein Barr Virus) then they may try and wait longer to find a donor that is negative for both.

There is no clearcut you are going to be transplanted around this FEV1 thing that is in place. I know from talking to my docs that they LIKE and PREFER to transplant patients when they are in the 15-25% range because you are sick enough to be in dire need but not so sick that recovery will be excessively hard on you.

I know that is alot of stuff but I just wanted to put that out there because the way your question was worded seemed that you just wanted an FEV1 but there is more to it than that. Also something that can move a person up is how resistant their bugs are to treatment and how often or long they are needing IV treatment for - at least that is what I was told by some coordinators at my center.

Take Care,
Lindsey

coltsfan715 · Mar 16, 2008

You can't really say as it depends on more than just the FEV1 of a patient as to whether or not they are moved up the list.

I know for my I was transplanted at 22%. I was listed when I was at 29% FEV1. THat being said I also know of others at my center that were vented when they were called or in their teens when they were called.

There are things that they consider like heart functionality - meaning do you have pulmonary hypertension and if so the severity. Also they may choose to wait a bit longer for some patients if it is possible to get a better match for them in regards to viral status - meaning if the recipient is negative for CMV (Cytomegalovirus) and EBV (Epstein Barr Virus) then they may try and wait longer to find a donor that is negative for both.

There is no clearcut you are going to be transplanted around this FEV1 thing that is in place. I know from talking to my docs that they LIKE and PREFER to transplant patients when they are in the 15-25% range because you are sick enough to be in dire need but not so sick that recovery will be excessively hard on you.

I know that is alot of stuff but I just wanted to put that out there because the way your question was worded seemed that you just wanted an FEV1 but there is more to it than that. Also something that can move a person up is how resistant their bugs are to treatment and how often or long they are needing IV treatment for - at least that is what I was told by some coordinators at my center.

Take Care,
Lindsey

coltsfan715 · Mar 16, 2008

You can't really say as it depends on more than just the FEV1 of a patient as to whether or not they are moved up the list.

I know for my I was transplanted at 22%. I was listed when I was at 29% FEV1. THat being said I also know of others at my center that were vented when they were called or in their teens when they were called.

There are things that they consider like heart functionality - meaning do you have pulmonary hypertension and if so the severity. Also they may choose to wait a bit longer for some patients if it is possible to get a better match for them in regards to viral status - meaning if the recipient is negative for CMV (Cytomegalovirus) and EBV (Epstein Barr Virus) then they may try and wait longer to find a donor that is negative for both.

There is no clearcut you are going to be transplanted around this FEV1 thing that is in place. I know from talking to my docs that they LIKE and PREFER to transplant patients when they are in the 15-25% range because you are sick enough to be in dire need but not so sick that recovery will be excessively hard on you.

I know that is alot of stuff but I just wanted to put that out there because the way your question was worded seemed that you just wanted an FEV1 but there is more to it than that. Also something that can move a person up is how resistant their bugs are to treatment and how often or long they are needing IV treatment for - at least that is what I was told by some coordinators at my center.

Take Care,
Lindsey

coltsfan715 · Mar 16, 2008

You can't really say as it depends on more than just the FEV1 of a patient as to whether or not they are moved up the list.
 
 I know for my I was transplanted at 22%. I was listed when I was at 29% FEV1. THat being said I also know of others at my center that were vented when they were called or in their teens when they were called.
 
 There are things that they consider like heart functionality - meaning do you have pulmonary hypertension and if so the severity. Also they may choose to wait a bit longer for some patients if it is possible to get a better match for them in regards to viral status - meaning if the recipient is negative for CMV (Cytomegalovirus) and EBV (Epstein Barr Virus) then they may try and wait longer to find a donor that is negative for both.
 
 There is no clearcut you are going to be transplanted around this FEV1 thing that is in place. I know from talking to my docs that they LIKE and PREFER to transplant patients when they are in the 15-25% range because you are sick enough to be in dire need but not so sick that recovery will be excessively hard on you.
 
 I know that is alot of stuff but I just wanted to put that out there because the way your question was worded seemed that you just wanted an FEV1 but there is more to it than that. Also something that can move a person up is how resistant their bugs are to treatment and how often or long they are needing IV treatment for - at least that is what I was told by some coordinators at my center.
 
 Take Care,
 Lindsey

CFSpouse · Mar 26, 2008

I agree with coltsfan715. My husband was evaluated the last week of February, and transplanted on March 16th.

They put you through many tests, including physical tests to make sure that you are strong enough to handle recovery.

The various doctors compile all of the data that was collected, as well as what they thought of you, as a potential candidate, and meet and discuss whether or not to list you. They look for how educated you are on the transplant topic, whether you are emotionally ready, whether you follow 'doctors' orders', stuff like that.

CFSpouse · Mar 26, 2008

I agree with coltsfan715. My husband was evaluated the last week of February, and transplanted on March 16th.

They put you through many tests, including physical tests to make sure that you are strong enough to handle recovery.

The various doctors compile all of the data that was collected, as well as what they thought of you, as a potential candidate, and meet and discuss whether or not to list you. They look for how educated you are on the transplant topic, whether you are emotionally ready, whether you follow 'doctors' orders', stuff like that.

CFSpouse · Mar 26, 2008

I agree with coltsfan715. My husband was evaluated the last week of February, and transplanted on March 16th.

They put you through many tests, including physical tests to make sure that you are strong enough to handle recovery.

The various doctors compile all of the data that was collected, as well as what they thought of you, as a potential candidate, and meet and discuss whether or not to list you. They look for how educated you are on the transplant topic, whether you are emotionally ready, whether you follow 'doctors' orders', stuff like that.

CFSpouse · Mar 26, 2008

I agree with coltsfan715. My husband was evaluated the last week of February, and transplanted on March 16th.

They put you through many tests, including physical tests to make sure that you are strong enough to handle recovery.

The various doctors compile all of the data that was collected, as well as what they thought of you, as a potential candidate, and meet and discuss whether or not to list you. They look for how educated you are on the transplant topic, whether you are emotionally ready, whether you follow 'doctors' orders', stuff like that.

CFSpouse · Mar 26, 2008

I agree with coltsfan715. My husband was evaluated the last week of February, and transplanted on March 16th.
 
 They put you through many tests, including physical tests to make sure that you are strong enough to handle recovery.
 
 The various doctors compile all of the data that was collected, as well as what they thought of you, as a potential candidate, and meet and discuss whether or not to list you. They look for how educated you are on the transplant topic, whether you are emotionally ready, whether you follow 'doctors' orders', stuff like that.

LGMClark · Mar 29, 2008

I was evaluated when my PFT baseline remained in the 30's. This has been my baseline for around 5 years!
I just hit PFT%40 in September due to going to the gym and working out but remain in the 30's. So as of now, I'm being monitored every 3 mo. and on the "inactive" status of the list. I believe they will list me when my baseline is in the 20's and my quality of life reflects the #'s I put out. My quality of life is not what I consider to be bad. I work full time, I don't feel that CF has made me "that much different" than others w/out CF except for my exercise tolerance (which isn't much worse than a normal non-cf'r COUCH potato

.
That being said, I think the FEV1% is part of the eval. process, but quality of life is also a big part. Why transx if you're not ready? I feel that I WILL have a transx. eventually, but not until it is absolutly neccessary.

LGMClark · Mar 29, 2008

I was evaluated when my PFT baseline remained in the 30's. This has been my baseline for around 5 years!
I just hit PFT%40 in September due to going to the gym and working out but remain in the 30's. So as of now, I'm being monitored every 3 mo. and on the "inactive" status of the list. I believe they will list me when my baseline is in the 20's and my quality of life reflects the #'s I put out. My quality of life is not what I consider to be bad. I work full time, I don't feel that CF has made me "that much different" than others w/out CF except for my exercise tolerance (which isn't much worse than a normal non-cf'r COUCH potato

.
That being said, I think the FEV1% is part of the eval. process, but quality of life is also a big part. Why transx if you're not ready? I feel that I WILL have a transx. eventually, but not until it is absolutly neccessary.

LGMClark · Mar 29, 2008

I was evaluated when my PFT baseline remained in the 30's. This has been my baseline for around 5 years!
I just hit PFT%40 in September due to going to the gym and working out but remain in the 30's. So as of now, I'm being monitored every 3 mo. and on the "inactive" status of the list. I believe they will list me when my baseline is in the 20's and my quality of life reflects the #'s I put out. My quality of life is not what I consider to be bad. I work full time, I don't feel that CF has made me "that much different" than others w/out CF except for my exercise tolerance (which isn't much worse than a normal non-cf'r COUCH potato

.
That being said, I think the FEV1% is part of the eval. process, but quality of life is also a big part. Why transx if you're not ready? I feel that I WILL have a transx. eventually, but not until it is absolutly neccessary.

LGMClark · Mar 29, 2008

I was evaluated when my PFT baseline remained in the 30's. This has been my baseline for around 5 years!
I just hit PFT%40 in September due to going to the gym and working out but remain in the 30's. So as of now, I'm being monitored every 3 mo. and on the "inactive" status of the list. I believe they will list me when my baseline is in the 20's and my quality of life reflects the #'s I put out. My quality of life is not what I consider to be bad. I work full time, I don't feel that CF has made me "that much different" than others w/out CF except for my exercise tolerance (which isn't much worse than a normal non-cf'r COUCH potato

.
That being said, I think the FEV1% is part of the eval. process, but quality of life is also a big part. Why transx if you're not ready? I feel that I WILL have a transx. eventually, but not until it is absolutly neccessary.

LGMClark · Mar 29, 2008

I was evaluated when my PFT baseline remained in the 30's. This has been my baseline for around 5 years!
 I just hit PFT%40 in September due to going to the gym and working out but remain in the 30's. So as of now, I'm being monitored every 3 mo. and on the "inactive" status of the list. I believe they will list me when my baseline is in the 20's and my quality of life reflects the #'s I put out. My quality of life is not what I consider to be bad. I work full time, I don't feel that CF has made me "that much different" than others w/out CF except for my exercise tolerance (which isn't much worse than a normal non-cf'r COUCH potato

.
 That being said, I think the FEV1% is part of the eval. process, but quality of life is also a big part. Why transx if you're not ready? I feel that I WILL have a transx. eventually, but not until it is absolutly neccessary.

Transplant and FEV1

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