Re: UNOS rule changes GGT & Multiple Listing

[Guest guest]

I'm curious, if you know, about the reasoning to discontinue the requirement for GGT. I didn't find anything about the reasoning.I understand it is non-specific to PSC - and can be temporarily elevated from things that might not (or might not yet) damage the liver long term, but that is the test that finally convinced my daughter's doctor to take her symptoms and other (relatively low) blood tests seriously. Is it the relatively longer processing time for the test (that might require an unacceptable delay in making the organ available for transplant)?I'd hate to transplant a liver from someone with undiagnosed PSC into someone who needs a liver (particularly if they need it because their own has given out because of PSC). , Mom to 18 yo

daughter UC 6/95, PSC 3/09To: Sent: Monday, April 6, 2009 12:43:03 PMSubject: UNOS rule changes GGT & Multiple Listing

Of interest…. They will discontinue using the

lab test GGT. Also on mulitple listing…. Numerous professionals and patients have requested

modification of policy 3.2.2 (Multiple Listing Permitted) to be listed at

multiple transplant centers within a DSA. Note: It is still the transplant center’s

decision to list a candidate who is already listed at another transplant

center. Further, current educational materials distributed by

UNOS and the Health Resources and Services Administration (HRSA) convey that this

type of multiple listing is permitted. Currently, over 500 candidates are

listed at multiple centers within a DSA. To read all the changes go to: http://www.unos. org/SharedConten tDocuments/ BOD_March09_ Policy_Notice. pdf Barb in Texas - Together in the Fight

- Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 &

6/30 2007 @ Baylor/Dallas

[Guest guest]

-----Original

Message-----

I'm curious, if you know, about the reasoning to discontinue the

requirement for GGT.

I don’t know for sure why they stopped using it, but

I can guess. Higher GGT levels tell

doctors something is wrong with the liver, but not “what”

is wrong. So in that respect, it’s

a useless tool. Plus, besides

liver, higher levels can be caused by heart disease, alcohol consumption, many

(too many to list) different kinds of drugs (both prescription and

non-prescription), antibiotics, antidepressants and birth control pills. So if a doctor sees a high GGT, he can’t

pin it on any one thing without a lot more research to find the cause. As far as liver patients go, once you

have been diagnosed with a liver disease, everyone knows you have one, so why

do the GGT test again? Baylor doesn’t

even do a GGT post-transplant. Plus,

the National Academy of Clinical Biochemistry and the American Association for

the Study of Liver Diseases do not recommend routine use of GGT. I think UNOS just fell into line with

everyone else.

Is it the relatively longer processing time for the test (that

might require an unacceptable delay in making the organ available for

transplant)?

Livers are good (sorry this sounds

crass) for 12 hours, so I don’t think time is involved. But….money might be, the GGT is

pretty expensive. HTH

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 &

6/30 2007 @ Baylor/Dallas

___

[Guest guest]

-----Original

Message-----

I'm curious, if you know, about the reasoning to discontinue the

requirement for GGT.

I don’t know for sure why they stopped using it, but

I can guess. Higher GGT levels tell

doctors something is wrong with the liver, but not “what”

is wrong. So in that respect, it’s

a useless tool. Plus, besides

liver, higher levels can be caused by heart disease, alcohol consumption, many

(too many to list) different kinds of drugs (both prescription and

non-prescription), antibiotics, antidepressants and birth control pills. So if a doctor sees a high GGT, he can’t

pin it on any one thing without a lot more research to find the cause. As far as liver patients go, once you

have been diagnosed with a liver disease, everyone knows you have one, so why

do the GGT test again? Baylor doesn’t

even do a GGT post-transplant. Plus,

the National Academy of Clinical Biochemistry and the American Association for

the Study of Liver Diseases do not recommend routine use of GGT. I think UNOS just fell into line with

everyone else.

Is it the relatively longer processing time for the test (that

might require an unacceptable delay in making the organ available for

transplant)?

Livers are good (sorry this sounds

crass) for 12 hours, so I don’t think time is involved. But….money might be, the GGT is

pretty expensive. HTH

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 &

6/30 2007 @ Baylor/Dallas

___

[Guest guest]

-----Original

Message-----

I'm curious, if you know, about the reasoning to discontinue the

requirement for GGT.

I don’t know for sure why they stopped using it, but

I can guess. Higher GGT levels tell

doctors something is wrong with the liver, but not “what”

is wrong. So in that respect, it’s

a useless tool. Plus, besides

liver, higher levels can be caused by heart disease, alcohol consumption, many

(too many to list) different kinds of drugs (both prescription and

non-prescription), antibiotics, antidepressants and birth control pills. So if a doctor sees a high GGT, he can’t

pin it on any one thing without a lot more research to find the cause. As far as liver patients go, once you

have been diagnosed with a liver disease, everyone knows you have one, so why

do the GGT test again? Baylor doesn’t

even do a GGT post-transplant. Plus,

the National Academy of Clinical Biochemistry and the American Association for

the Study of Liver Diseases do not recommend routine use of GGT. I think UNOS just fell into line with

everyone else.

Is it the relatively longer processing time for the test (that

might require an unacceptable delay in making the organ available for

transplant)?

Livers are good (sorry this sounds

crass) for 12 hours, so I don’t think time is involved. But….money might be, the GGT is

pretty expensive. HTH

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 &

6/30 2007 @ Baylor/Dallas

___

[Guest guest]

>>As far as liver patients go, once you

have been diagnosed with a liver disease, everyone knows you have one, so why

do the GGT test again?<<Maybe I misunderstoood - I thought it was the donor GGT they were deciding not to test. If it is the donor being tested - knowing something is wrong with the liver might be reason to think twice about putting it into someone who had already experienced liver failure (for one thing it's going to have to work pretty hard right off the bat to clean up the mess the old liver left).>>Livers are good (sorry this sounds

crass) for 12 hours, so I don’t think time is involved. But….money might be, the GGT is

pretty expensive.<<Doesn't sound crass to me - that is what I was getting at. I don't know how long it routinely takes to process GGT - ours is always sent out and comes back 12-24 hours later. If it takes longer than 12 hours to process a GGT and a liver is only "good" for 12 hours there might not be time to process the test.As to cost - where we have it done it's only a couple dollars more than the ALT or AST (in the ballpark of $150). Online labs I've found range from $20-$45. , Mom to 18 yo daughter UC 6/95, PSC 3/09

[Guest guest]

>>As far as liver patients go, once you

have been diagnosed with a liver disease, everyone knows you have one, so why

do the GGT test again?<<Maybe I misunderstoood - I thought it was the donor GGT they were deciding not to test. If it is the donor being tested - knowing something is wrong with the liver might be reason to think twice about putting it into someone who had already experienced liver failure (for one thing it's going to have to work pretty hard right off the bat to clean up the mess the old liver left).>>Livers are good (sorry this sounds

crass) for 12 hours, so I don’t think time is involved. But….money might be, the GGT is

pretty expensive.<<Doesn't sound crass to me - that is what I was getting at. I don't know how long it routinely takes to process GGT - ours is always sent out and comes back 12-24 hours later. If it takes longer than 12 hours to process a GGT and a liver is only "good" for 12 hours there might not be time to process the test.As to cost - where we have it done it's only a couple dollars more than the ALT or AST (in the ballpark of $150). Online labs I've found range from $20-$45. , Mom to 18 yo daughter UC 6/95, PSC 3/09

[Guest guest]

-----Original

Message-----

I thought it was the donor GGT they were deciding not to

test.

Yeah, but same reasons

apply. Heck I don’t know, maybe

they just rely on the other tried and true tests more than GGT. Once you do the ALT, AST, Bilirubin, Creatine,

Albumin, INR etc, etc. you have a pretty good picture of liver health. Good question for anyone to take to the

conference – and report back to those who can’t go - Please.

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 &

6/30 2007 @ Baylor/Dallas

[Guest guest]

-----Original

Message-----

I thought it was the donor GGT they were deciding not to

test.

Yeah, but same reasons

apply. Heck I don’t know, maybe

they just rely on the other tried and true tests more than GGT. Once you do the ALT, AST, Bilirubin, Creatine,

Albumin, INR etc, etc. you have a pretty good picture of liver health. Good question for anyone to take to the

conference – and report back to those who can’t go - Please.

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 &

6/30 2007 @ Baylor/Dallas

[Guest guest]

-----Original

Message-----

I thought it was the donor GGT they were deciding not to

test.

Yeah, but same reasons

apply. Heck I don’t know, maybe

they just rely on the other tried and true tests more than GGT. Once you do the ALT, AST, Bilirubin, Creatine,

Albumin, INR etc, etc. you have a pretty good picture of liver health. Good question for anyone to take to the

conference – and report back to those who can’t go - Please.

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 &

6/30 2007 @ Baylor/Dallas

[Guest guest]

Okay - I'll see what I can find out.I am perhaps a bit more sensitive to the value of the GGT in some circumstances, since it was only when my daughter's GGT came back 4x normal that her doctor decided there was something serious going on. I was a bit skeptical when he ordered the test, since I'd read all of the various things that could show up as a high GGT - but it did get his attention (and he's still running it).I'm just envisioning someone with undiagnosed PSC and only slightly high LFT numbers dying unexpectedly and his/her liver being transplanted into someone with PSC and thinking that would be a bad thing. , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Tuesday, April 7, 2009 4:49:47 PMSubject: RE: UNOS rule changes GGT & Multiple Listing

-----Original

Message-----

I thought it was the donor GGT they were deciding not to

test. Yeah, but same reasons

apply. Heck I don’t know, maybe

they just rely on the other tried and true tests more than GGT. Once you do the ALT, AST, Bilirubin, Creatine,

Albumin, INR etc, etc. you have a pretty good picture of liver health. Good question for anyone to take to the

conference – and report back to those who can’t go - Please.

Barb in Texas - Together in the Fight - Whatever it

Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 &

6/30 2007 @ Baylor/Dallas

[Guest guest]

Okay - I'll see what I can find out.I am perhaps a bit more sensitive to the value of the GGT in some circumstances, since it was only when my daughter's GGT came back 4x normal that her doctor decided there was something serious going on. I was a bit skeptical when he ordered the test, since I'd read all of the various things that could show up as a high GGT - but it did get his attention (and he's still running it).I'm just envisioning someone with undiagnosed PSC and only slightly high LFT numbers dying unexpectedly and his/her liver being transplanted into someone with PSC and thinking that would be a bad thing. , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Tuesday, April 7, 2009 4:49:47 PMSubject: RE: UNOS rule changes GGT & Multiple Listing

-----Original

Message-----

I thought it was the donor GGT they were deciding not to

test. Yeah, but same reasons

apply. Heck I don’t know, maybe

they just rely on the other tried and true tests more than GGT. Once you do the ALT, AST, Bilirubin, Creatine,

Albumin, INR etc, etc. you have a pretty good picture of liver health. Good question for anyone to take to the

conference – and report back to those who can’t go - Please.

Barb in Texas - Together in the Fight - Whatever it

Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 &

6/30 2007 @ Baylor/Dallas

[Guest guest]

Okay - I'll see what I can find out.I am perhaps a bit more sensitive to the value of the GGT in some circumstances, since it was only when my daughter's GGT came back 4x normal that her doctor decided there was something serious going on. I was a bit skeptical when he ordered the test, since I'd read all of the various things that could show up as a high GGT - but it did get his attention (and he's still running it).I'm just envisioning someone with undiagnosed PSC and only slightly high LFT numbers dying unexpectedly and his/her liver being transplanted into someone with PSC and thinking that would be a bad thing. , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Tuesday, April 7, 2009 4:49:47 PMSubject: RE: UNOS rule changes GGT & Multiple Listing

-----Original

Message-----

I thought it was the donor GGT they were deciding not to

test. Yeah, but same reasons

apply. Heck I don’t know, maybe

they just rely on the other tried and true tests more than GGT. Once you do the ALT, AST, Bilirubin, Creatine,

Albumin, INR etc, etc. you have a pretty good picture of liver health. Good question for anyone to take to the

conference – and report back to those who can’t go - Please.

Barb in Texas - Together in the Fight - Whatever it

Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 &

6/30 2007 @ Baylor/Dallas