Re: Phil & tx list

[Guest guest]

Phil and I went to his liver doctor today. He said Phil's liver functions

are in the normal range and his alkaline or phosphate levels were just

slightly elevated and everything is looking good. Now we're a little

concerned that due to the fact that he hasn't had an infecton in 6 months

that they won't put him on the list. But he is still recommending

him for listing and we will be meeting with the tx team at UCLA and it

will be up to them. He said that a lot depends on their past experiences

for example if they had a previous patient like Phil that reoccuring infections

and then they had a long period of wellness, so they didn't list them and

then the person got an infection and died (that's a bit drastic of an explanation)

they might think more carefully about listing Phil. At this time

I'm not even sure he has enough points and I am sure that if he has no

more infections before seeing them that if he is listed it will probably

be a status 7. The main thing would be that he could start accruing

his time on the llsit.

Then we met with Kaisers transplant coordinator who went into detail

about the various things we should watch for as far as getting him to a

hospital and letting her know so she can notate more points and such.

Thanks to the group I understood what she was saying very well because

of the discriptions you all have given in regard to the various symptoms.

There was some information that we did get from her that we found very

helpful. I don't think she's really studied Phil's history yet because

she really didn't know about the problems he has had but hopefully she'll

study it now and keep up with it. I sat there thinking when she was

explaining each problem (oh, that's what must have happened with Jacquelyn's

surgery, or has that, or Biddy had that etc.) I can't imagine

what it would be like to go through this without the knowleged I've gained

through the group. I think I would be overwhelmed and scared to death.

Biddy, you asked what Phil's symptoms are: The main reason they

would list Phil is that he had 4 reoccuring infections from 12/28/98-3/23/99.

His other symptoms are the constricted bile duct that wouldn't allow the

ERCP to be completed, and the fatigue and some brain fog.

Now, some of the things that the coordinator talked about made me think

of you. She said that when the liver gets cirrhosed fluid backs up

into the abdomen and causes bloating and PAIN. She also talked about

bleeding varacies in the digestive tract. Then the brain fog and

disorientation - The can give you lactilose or something like that (maybe

someone can correct me on what the drug is, she said it was a liquid) to

help the brain fog and that if it got too bad they could hospitalize you

and actually do a detox on you. Now when she was describing it I thought

of you. It seems to me that you are in this situation. I seriously

think you need more help than you are getting. I don't like it when someone

critisizes the treatment of our doctors but it seems like the doctors you

are seeing don't have a clue. Can't you go somewhere else?

Aren't there any agencies that can help you with the finances? I

feel so bad for you.

We will be praying for you, wish we could do more. Well one of

the guys from the field is making me get to work so I have to go.

I might have a few more questions for Tim later.

Peg

Biddy Santon wrote:

Hi Peggy!

I hope Phil gets on the list -- seems like many on this site are getting

a new liver -- what a blessing! My brain fog is getting

so very bad, so I have my hubby, , typing this one. What were and

are Phil's symptoms? I meant to ask Roy the same about

, but forgot! Thanks! Hugs,

Biddy

-----Original

Message-----

To: egroups

<egroups>

Date: Thursday, October 14,

1999 7:03 PM

Subject: Re:

Vitiam B12 shotThe only answer we get is fatigue is part

of the disease. We see the liver doctor and coordinator tomorrow

and the social worker next Wed. hopefully this will result in Phil

getting listed.

Peg

Vizas wrote:

Patti....... Mike

seemed to notice , within hours, that his energy level increased. He seems

to feel that on the 12 or 13th day his energy level decreased. Did you

find this to be so. Both of us have a bad cold so Mike's going in on Saturday

to get another shot.By the way our primary care physican suggested that

Mike pick up Chromium Picolate. I'm not certain what its use is, may be

someone out there knows. As of yet no one at s

Hopkins has sent Mike to a nuitritionist or suggested they he see someone

about how to boost his energy level. What are you and others doing about

this? Lynn

-----Original

Message-----

To: egroups

<egroups>

Date: Sunday, October 10, 1999

8:07 PM

Subject: Re:

Vitiam B12 shotLynn,

My husband Mike gets Vit. B-12 shots every two weeks

and has been doing so for about 6 months now. He gets them from my

family Dr. who is from England and believes in them. Apparently people

with liver disease need extra It. B , it is supposed to very good for the

liver and other functions as well. Mike finds that the day after

he gets it he feels a bit draggy and then it really gives him a pick me

up, he feels stronger after that. His specialist in Halifax agreed

100% that he get them and a nutrionist that I spoke with said they would

be helpful as well. It may take awhile for him to feel the benefit

from them.

Patti

Vizas wrote:

Hello everyone.....A few weeks

ago Mikes primary doctor gave him a B12

shot...It really made him feel so much better...energy wise. I really

didn't

like Mike doing that without talking to his liver doctor. Does anyone

get

these? Does anyone know how it affects the liver?

Lynn

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[Guest guest]

Phil and I went to his liver doctor today. He said Phil's liver functions

are in the normal range and his alkaline or phosphate levels were just

slightly elevated and everything is looking good. Now we're a little

concerned that due to the fact that he hasn't had an infecton in 6 months

that they won't put him on the list. But he is still recommending

him for listing and we will be meeting with the tx team at UCLA and it

will be up to them. He said that a lot depends on their past experiences

for example if they had a previous patient like Phil that reoccuring infections

and then they had a long period of wellness, so they didn't list them and

then the person got an infection and died (that's a bit drastic of an explanation)

they might think more carefully about listing Phil. At this time

I'm not even sure he has enough points and I am sure that if he has no

more infections before seeing them that if he is listed it will probably

be a status 7. The main thing would be that he could start accruing

his time on the llsit.

Then we met with Kaisers transplant coordinator who went into detail

about the various things we should watch for as far as getting him to a

hospital and letting her know so she can notate more points and such.

Thanks to the group I understood what she was saying very well because

of the discriptions you all have given in regard to the various symptoms.

There was some information that we did get from her that we found very

helpful. I don't think she's really studied Phil's history yet because

she really didn't know about the problems he has had but hopefully she'll

study it now and keep up with it. I sat there thinking when she was

explaining each problem (oh, that's what must have happened with Jacquelyn's

surgery, or has that, or Biddy had that etc.) I can't imagine

what it would be like to go through this without the knowleged I've gained

through the group. I think I would be overwhelmed and scared to death.

Biddy, you asked what Phil's symptoms are: The main reason they

would list Phil is that he had 4 reoccuring infections from 12/28/98-3/23/99.

His other symptoms are the constricted bile duct that wouldn't allow the

ERCP to be completed, and the fatigue and some brain fog.

Now, some of the things that the coordinator talked about made me think

of you. She said that when the liver gets cirrhosed fluid backs up

into the abdomen and causes bloating and PAIN. She also talked about

bleeding varacies in the digestive tract. Then the brain fog and

disorientation - The can give you lactilose or something like that (maybe

someone can correct me on what the drug is, she said it was a liquid) to

help the brain fog and that if it got too bad they could hospitalize you

and actually do a detox on you. Now when she was describing it I thought

of you. It seems to me that you are in this situation. I seriously

think you need more help than you are getting. I don't like it when someone

critisizes the treatment of our doctors but it seems like the doctors you

are seeing don't have a clue. Can't you go somewhere else?

Aren't there any agencies that can help you with the finances? I

feel so bad for you.

We will be praying for you, wish we could do more. Well one of

the guys from the field is making me get to work so I have to go.

I might have a few more questions for Tim later.

Peg

Biddy Santon wrote:

Hi Peggy!

I hope Phil gets on the list -- seems like many on this site are getting

a new liver -- what a blessing! My brain fog is getting

so very bad, so I have my hubby, , typing this one. What were and

are Phil's symptoms? I meant to ask Roy the same about

, but forgot! Thanks! Hugs,

Biddy

-----Original

Message-----

To: egroups

<egroups>

Date: Thursday, October 14,

1999 7:03 PM

Subject: Re:

Vitiam B12 shotThe only answer we get is fatigue is part

of the disease. We see the liver doctor and coordinator tomorrow

and the social worker next Wed. hopefully this will result in Phil

getting listed.

Peg

Vizas wrote:

Patti....... Mike

seemed to notice , within hours, that his energy level increased. He seems

to feel that on the 12 or 13th day his energy level decreased. Did you

find this to be so. Both of us have a bad cold so Mike's going in on Saturday

to get another shot.By the way our primary care physican suggested that

Mike pick up Chromium Picolate. I'm not certain what its use is, may be

someone out there knows. As of yet no one at s

Hopkins has sent Mike to a nuitritionist or suggested they he see someone

about how to boost his energy level. What are you and others doing about

this? Lynn

-----Original

Message-----

To: egroups

<egroups>

Date: Sunday, October 10, 1999

8:07 PM

Subject: Re:

Vitiam B12 shotLynn,

My husband Mike gets Vit. B-12 shots every two weeks

and has been doing so for about 6 months now. He gets them from my

family Dr. who is from England and believes in them. Apparently people

with liver disease need extra It. B , it is supposed to very good for the

liver and other functions as well. Mike finds that the day after

he gets it he feels a bit draggy and then it really gives him a pick me

up, he feels stronger after that. His specialist in Halifax agreed

100% that he get them and a nutrionist that I spoke with said they would

be helpful as well. It may take awhile for him to feel the benefit

from them.

Patti

Vizas wrote:

Hello everyone.....A few weeks

ago Mikes primary doctor gave him a B12

shot...It really made him feel so much better...energy wise. I really

didn't

like Mike doing that without talking to his liver doctor. Does anyone

get

these? Does anyone know how it affects the liver?

Lynn

------------------------------------------------------------------------

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[Guest guest]

Peggy,

I can't understand why he isn't on the list -- maybe they will put him on when you get to UCLA. Have everything crossed I can for you two!

Here I go again, I feel so sorry for the families of people with this disease. You don't know exactly how to help -- really there is no help. It has got to be maddening for you. All we have to do is put up with this " devil disease " and we have, hopefully, family or friends that can or will help us. Oh how I ache for you and the other families!

What are you talking about a detox place? I am so confused anymore that I can't remember anything. , my hubby, types most of my posts for me because they just do not make sense -- what else is new.

I have never understood the status numbers -- my doctors have never even mentioned them in any way, so maybe it will be years before a tx. I can tell you now I will not put up with this stuff much longer. I want to get well and hopefully get back to work. I definitely have too much time on my hands and had a " pity party " today. Oh how I hate it when I get these, but I am so tired of the pain, nausea, the dizziness and all of this stuff. I know that I really, really take advantage of the young people on our list because when I do go into a " pity party " I think immediately of them and their parents. I can always be much, much worse.

I hate to trash a doctor, but my doctor doesn't seem interested at all in my case. I guess it is because I have no insurance -- I have heard of this happening, but I thought I would never see it actually happen. I do hope they can sleep at night just because of money! I know I couldn't, but I have always been too soft and always given everything I can to those that were less fortunate than I was.

Oh well, just another post that doesn't need to be sent.

Take care of yourselves -- will be in your corner no matter what!

Hugs,

Biddy

Re: Vitiam B12 shotLynn, My husband Mike gets Vit. B-12 shots every two weeks and has been doing so for about 6 months now. He gets them from my family Dr. who is from England and believes in them. Apparently people with liver disease need extra It. B , it is supposed to very good for the liver and other functions as well. Mike finds that the day after he gets it he feels a bit draggy and then it really gives him a pick me up, he feels stronger after that. His specialist in Halifax agreed 100% that he get them and a nutrionist that I spoke with said they would be helpful as well. It may take awhile for him to feel the benefit from them. Patti Vizas wrote: Hello everyone.....A few weeks ago Mikes primary doctor gave him a B12 shot...It really made him feel so much better...energy wise. I really didn't like Mike doing that without talking to his liver doctor. Does anyone get these? Does anyone know how it affects the liver? Lynn ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications

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[Guest guest]

Peggy,

I can't understand why he isn't on the list -- maybe they will put him on when you get to UCLA. Have everything crossed I can for you two!

Here I go again, I feel so sorry for the families of people with this disease. You don't know exactly how to help -- really there is no help. It has got to be maddening for you. All we have to do is put up with this " devil disease " and we have, hopefully, family or friends that can or will help us. Oh how I ache for you and the other families!

What are you talking about a detox place? I am so confused anymore that I can't remember anything. , my hubby, types most of my posts for me because they just do not make sense -- what else is new.

I have never understood the status numbers -- my doctors have never even mentioned them in any way, so maybe it will be years before a tx. I can tell you now I will not put up with this stuff much longer. I want to get well and hopefully get back to work. I definitely have too much time on my hands and had a " pity party " today. Oh how I hate it when I get these, but I am so tired of the pain, nausea, the dizziness and all of this stuff. I know that I really, really take advantage of the young people on our list because when I do go into a " pity party " I think immediately of them and their parents. I can always be much, much worse.

I hate to trash a doctor, but my doctor doesn't seem interested at all in my case. I guess it is because I have no insurance -- I have heard of this happening, but I thought I would never see it actually happen. I do hope they can sleep at night just because of money! I know I couldn't, but I have always been too soft and always given everything I can to those that were less fortunate than I was.

Oh well, just another post that doesn't need to be sent.

Take care of yourselves -- will be in your corner no matter what!

Hugs,

Biddy

Re: Vitiam B12 shotLynn, My husband Mike gets Vit. B-12 shots every two weeks and has been doing so for about 6 months now. He gets them from my family Dr. who is from England and believes in them. Apparently people with liver disease need extra It. B , it is supposed to very good for the liver and other functions as well. Mike finds that the day after he gets it he feels a bit draggy and then it really gives him a pick me up, he feels stronger after that. His specialist in Halifax agreed 100% that he get them and a nutrionist that I spoke with said they would be helpful as well. It may take awhile for him to feel the benefit from them. Patti Vizas wrote: Hello everyone.....A few weeks ago Mikes primary doctor gave him a B12 shot...It really made him feel so much better...energy wise. I really didn't like Mike doing that without talking to his liver doctor. Does anyone get these? Does anyone know how it affects the liver? Lynn ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications

Click Here!eGroups.com home: /group/ www. - Simplifying group communications

Click Here!eGroups.com home: /group/ www. - Simplifying group communications

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[Guest guest]

Biddy,

When will you qualify for medicare insurance? The chance of Phil

being put on the list isn't over we're just not sure how UCLA will react

but don't worry he's gone thorough all the preliminaries and if he gets

sick again they will be able to quick put him on it. I just hope

and pray that you can find doctors that will treat you as well as we've

been treated and your symptoms are not in your mind they are exactly how

the doctor and coordinator described them to us. Don't give up -

just keep pushing.

Peg

Biddy Santon wrote:

Peggy,

I can't understand why he isn't on the list -- maybe they will put him

on when you get to UCLA. Have everything crossed I can for you two!

Here I go again, I feel so sorry for the families of people with this disease.

You don't know exactly how to help -- really there is no help. It has got

to be maddening for you. All we have to do is put up with this "devil disease"

and we have, hopefully, family or friends that can or will help us. Oh

how I ache for you and the other families!

What are you talking about a detox place? I am so confused anymore that

I can't remember anything. , my hubby, types most of my posts for

me because they just do not make sense -- what else is new.

I have never understood the status numbers -- my doctors have never even

mentioned them in any way, so maybe it will be years before a tx. I can

tell you now I will not put up with this stuff much longer. I want to get

well and hopefully get back to work. I definitely have too much time on

my hands and had a "pity party" today. Oh how I hate it when I get these,

but I am so tired of the pain, nausea, the dizziness and all of this stuff.

I know that I really, really take advantage of the young people on our

list because when I do go into a "pity party" I think immediately of them

and their parents. I can always be much, much worse.

I hate to trash a doctor, but my doctor doesn't seem interested at all

in my case. I guess it is because I have no insurance -- I have heard of

this happening, but I thought I would never see it actually happen. I do

hope they can sleep at night just because of money! I know I couldn't,

but I have always been too soft and always given everything I can to those

that were less fortunate than I was.

Oh well, just another post that doesn't need to be sent.

Take care of yourselves -- will be in your corner no matter what!

Hugs,

Biddy

-----Original

Message-----

To: egroups

<egroups>

Date: Friday, October 15, 1999

6:12 PM

Subject: Re:

Phil & tx list

Phil and I went to his liver doctor today. He said Phil's

liver functions are in the normal range and his alkaline or phosphate levels

were just slightly elevated and everything is looking good. Now we're

a little concerned that due to the fact that he hasn't had an infecton

in 6 months that they won't put him on the list. But he is still

recommending him for listing and we will be meeting with the tx team at

UCLA and it will be up to them. He said that a lot depends on their

past experiences for example if they had a previous patient like Phil that

reoccuring infections and then they had a long period of wellness, so they

didn't list them and then the person got an infection and died (that's

a bit drastic of an explanation) they might think more carefully about

listing Phil. At this time I'm not even sure he has enough points

and I am sure that if he has no more infections before seeing them that

if he is listed it will probably be a status 7. The main thing would

be that he could start accruing his time on the llsit.

Then we met with Kaisers transplant coordinator who went into detail

about the various things we should watch for as far as getting him to a

hospital and letting her know so she can notate more points and such.

Thanks to the group I understood what she was saying very well because

of the discriptions you all have given in regard to the various symptoms.

There was some information that we did get from her that we found very

helpful. I don't think she's really studied Phil's history yet because

she really didn't know about the problems he has had but hopefully she'll

study it now and keep up with it. I sat there thinking when she was

explaining each problem (oh, that's what must have happened with Jacquelyn's

surgery, or has that, or Biddy had that etc.) I can't imagine

what it would be like to go through this without the knowleged I've gained

through the group. I think I would be overwhelmed and scared to death.

Biddy, you asked what Phil's symptoms are: The main reason they

would list Phil is that he had 4 reoccuring infections from 12/28/98-3/23/99.

His other symptoms are the constricted bile duct that wouldn't allow the

ERCP to be completed, and the fatigue and some brain fog.

Now, some of the things that the coordinator talked about made me think

of you. She said that when the liver gets cirrhosed fluid backs up

into the abdomen and causes bloating and PAIN. She also talked about

bleeding varacies in the digestive tract. Then the brain fog and

disorientation - The can give you lactilose or something like that (maybe

someone can correct me on what the drug is, she said it was a liquid) to

help the brain fog and that if it got too bad they could hospitalize you

and actually do a detox on you. Now when she was describing it I thought

of you. It seems to me that you are in this situation. I seriously

think you need more help than you are getting. I don't like it when someone

critisizes the treatment of our doctors but it seems like the doctors you

are seeing don't have a clue. Can't you go somewhere else?

Aren't there any agencies that can help you with the finances? I

feel so bad for you.

We will be praying for you, wish we could do more. Well one of

the guys from the field is making me get to work so I have to go.

I might have a few more questions for Tim later.

Peg

Biddy Santon wrote:

Hi Peggy!

I hope Phil gets on the list -- seems like many on this site are getting

a new liver -- what a blessing! My brain fog is getting

so very bad, so I have my hubby, , typing this one. What were and

are Phil's symptoms? I meant to ask Roy the same about

, but forgot! Thanks! Hugs,

Biddy

-----Original

Message-----

To: egroups

<egroups>

Date: Thursday, October 14,

1999 7:03 PM

Subject: Re:

Vitiam B12 shotThe only answer we get is fatigue is part

of the disease. We see the liver doctor and coordinator tomorrow

and the social worker next Wed. hopefully this will result in Phil

getting listed.

Peg

Vizas wrote:

Patti....... Mike

seemed to notice , within hours, that his energy level increased. He seems

to feel that on the 12 or 13th day his energy level decreased. Did you

find this to be so. Both of us have a bad cold so Mike's going in on Saturday

to get another shot.By the way our primary care physican suggested that

Mike pick up Chromium Picolate. I'm not certain what its use is, may be

someone out there knows. As of yet no one at s

Hopkins has sent Mike to a nuitritionist or suggested they he see someone

about how to boost his energy level. What are you and others doing about

this? Lynn

-----Original

Message-----

To: egroups

<egroups>

Date: Sunday, October 10, 1999

8:07 PM

Subject: Re:

Vitiam B12 shotLynn,

My husband Mike gets Vit. B-12 shots every two weeks

and has been doing so for about 6 months now. He gets them from my

family Dr. who is from England and believes in them. Apparently people

with liver disease need extra It. B , it is supposed to very good for the

liver and other functions as well. Mike finds that the day after

he gets it he feels a bit draggy and then it really gives him a pick me

up, he feels stronger after that. His specialist in Halifax agreed

100% that he get them and a nutrionist that I spoke with said they would

be helpful as well. It may take awhile for him to feel the benefit

from them.

Patti

Vizas wrote:

Hello everyone.....A few weeks

ago Mikes primary doctor gave him a B12

shot...It really made him feel so much better...energy wise. I really

didn't

like Mike doing that without talking to his liver doctor. Does anyone

get

these? Does anyone know how it affects the liver?

Lynn

------------------------------------------------------------------------

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- Simplifying

group communications

Click

Here!

eGroups.com home: /group/

www. - Simplifying

group communications

Click

Here!

eGroups.com home: /group/

www. - Simplifying

group communications

Click

Here!

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group communications

Click

Here!

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[Guest guest]

Biddy,

When will you qualify for medicare insurance? The chance of Phil

being put on the list isn't over we're just not sure how UCLA will react

but don't worry he's gone thorough all the preliminaries and if he gets

sick again they will be able to quick put him on it. I just hope

and pray that you can find doctors that will treat you as well as we've

been treated and your symptoms are not in your mind they are exactly how

the doctor and coordinator described them to us. Don't give up -

just keep pushing.

Peg

Biddy Santon wrote:

Peggy,

I can't understand why he isn't on the list -- maybe they will put him

on when you get to UCLA. Have everything crossed I can for you two!

Here I go again, I feel so sorry for the families of people with this disease.

You don't know exactly how to help -- really there is no help. It has got

to be maddening for you. All we have to do is put up with this "devil disease"

and we have, hopefully, family or friends that can or will help us. Oh

how I ache for you and the other families!

What are you talking about a detox place? I am so confused anymore that

I can't remember anything. , my hubby, types most of my posts for

me because they just do not make sense -- what else is new.

I have never understood the status numbers -- my doctors have never even

mentioned them in any way, so maybe it will be years before a tx. I can

tell you now I will not put up with this stuff much longer. I want to get

well and hopefully get back to work. I definitely have too much time on

my hands and had a "pity party" today. Oh how I hate it when I get these,

but I am so tired of the pain, nausea, the dizziness and all of this stuff.

I know that I really, really take advantage of the young people on our

list because when I do go into a "pity party" I think immediately of them

and their parents. I can always be much, much worse.

I hate to trash a doctor, but my doctor doesn't seem interested at all

in my case. I guess it is because I have no insurance -- I have heard of

this happening, but I thought I would never see it actually happen. I do

hope they can sleep at night just because of money! I know I couldn't,

but I have always been too soft and always given everything I can to those

that were less fortunate than I was.

Oh well, just another post that doesn't need to be sent.

Take care of yourselves -- will be in your corner no matter what!

Hugs,

Biddy

-----Original

Message-----

To: egroups

<egroups>

Date: Friday, October 15, 1999

6:12 PM

Subject: Re:

Phil & tx list

Phil and I went to his liver doctor today. He said Phil's

liver functions are in the normal range and his alkaline or phosphate levels

were just slightly elevated and everything is looking good. Now we're

a little concerned that due to the fact that he hasn't had an infecton

in 6 months that they won't put him on the list. But he is still

recommending him for listing and we will be meeting with the tx team at

UCLA and it will be up to them. He said that a lot depends on their

past experiences for example if they had a previous patient like Phil that

reoccuring infections and then they had a long period of wellness, so they

didn't list them and then the person got an infection and died (that's

a bit drastic of an explanation) they might think more carefully about

listing Phil. At this time I'm not even sure he has enough points

and I am sure that if he has no more infections before seeing them that

if he is listed it will probably be a status 7. The main thing would

be that he could start accruing his time on the llsit.

Then we met with Kaisers transplant coordinator who went into detail

about the various things we should watch for as far as getting him to a

hospital and letting her know so she can notate more points and such.

Thanks to the group I understood what she was saying very well because

of the discriptions you all have given in regard to the various symptoms.

There was some information that we did get from her that we found very

helpful. I don't think she's really studied Phil's history yet because

she really didn't know about the problems he has had but hopefully she'll

study it now and keep up with it. I sat there thinking when she was

explaining each problem (oh, that's what must have happened with Jacquelyn's

surgery, or has that, or Biddy had that etc.) I can't imagine

what it would be like to go through this without the knowleged I've gained

through the group. I think I would be overwhelmed and scared to death.

Biddy, you asked what Phil's symptoms are: The main reason they

would list Phil is that he had 4 reoccuring infections from 12/28/98-3/23/99.

His other symptoms are the constricted bile duct that wouldn't allow the

ERCP to be completed, and the fatigue and some brain fog.

Now, some of the things that the coordinator talked about made me think

of you. She said that when the liver gets cirrhosed fluid backs up

into the abdomen and causes bloating and PAIN. She also talked about

bleeding varacies in the digestive tract. Then the brain fog and

disorientation - The can give you lactilose or something like that (maybe

someone can correct me on what the drug is, she said it was a liquid) to

help the brain fog and that if it got too bad they could hospitalize you

and actually do a detox on you. Now when she was describing it I thought

of you. It seems to me that you are in this situation. I seriously

think you need more help than you are getting. I don't like it when someone

critisizes the treatment of our doctors but it seems like the doctors you

are seeing don't have a clue. Can't you go somewhere else?

Aren't there any agencies that can help you with the finances? I

feel so bad for you.

We will be praying for you, wish we could do more. Well one of

the guys from the field is making me get to work so I have to go.

I might have a few more questions for Tim later.

Peg

Biddy Santon wrote:

Hi Peggy!

I hope Phil gets on the list -- seems like many on this site are getting

a new liver -- what a blessing! My brain fog is getting

so very bad, so I have my hubby, , typing this one. What were and

are Phil's symptoms? I meant to ask Roy the same about

, but forgot! Thanks! Hugs,

Biddy

-----Original

Message-----

To: egroups

<egroups>

Date: Thursday, October 14,

1999 7:03 PM

Subject: Re:

Vitiam B12 shotThe only answer we get is fatigue is part

of the disease. We see the liver doctor and coordinator tomorrow

and the social worker next Wed. hopefully this will result in Phil

getting listed.

Peg

Vizas wrote:

Patti....... Mike

seemed to notice , within hours, that his energy level increased. He seems

to feel that on the 12 or 13th day his energy level decreased. Did you

find this to be so. Both of us have a bad cold so Mike's going in on Saturday

to get another shot.By the way our primary care physican suggested that

Mike pick up Chromium Picolate. I'm not certain what its use is, may be

someone out there knows. As of yet no one at s

Hopkins has sent Mike to a nuitritionist or suggested they he see someone

about how to boost his energy level. What are you and others doing about

this? Lynn

-----Original

Message-----

To: egroups

<egroups>

Date: Sunday, October 10, 1999

8:07 PM

Subject: Re:

Vitiam B12 shotLynn,

My husband Mike gets Vit. B-12 shots every two weeks

and has been doing so for about 6 months now. He gets them from my

family Dr. who is from England and believes in them. Apparently people

with liver disease need extra It. B , it is supposed to very good for the

liver and other functions as well. Mike finds that the day after

he gets it he feels a bit draggy and then it really gives him a pick me

up, he feels stronger after that. His specialist in Halifax agreed

100% that he get them and a nutrionist that I spoke with said they would

be helpful as well. It may take awhile for him to feel the benefit

from them.

Patti

Vizas wrote:

Hello everyone.....A few weeks

ago Mikes primary doctor gave him a B12

shot...It really made him feel so much better...energy wise. I really

didn't

like Mike doing that without talking to his liver doctor. Does anyone

get

these? Does anyone know how it affects the liver?

Lynn

------------------------------------------------------------------------

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[Guest guest]

Hi Peg,

They give you lactulose (it is a liquid and a laxative) It brings down the

ammonia level in your blood.

>

>Reply-To: egroups

>To: egroups

>Subject: Re: Phil & tx list

>Date: Fri, 15 Oct 1999 15:02:59 -0700

>

>Phil and I went to his liver doctor today. He said Phil's liver

>functions are in the normal range and his alkaline or phosphate levels

>were just slightly elevated and everything is looking good. Now we're a

>little concerned that due to the fact that he hasn't had an infecton in

>6 months that they won't put him on the list. But he is still

>recommending him for listing and we will be meeting with the tx team at

>UCLA and it will be up to them. He said that a lot depends on their

>past experiences for example if they had a previous patient like Phil

>that reoccuring infections and then they had a long period of wellness,

>so they didn't list them and then the person got an infection and died

>(that's a bit drastic of an explanation) they might think more carefully

>about listing Phil. At this time I'm not even sure he has enough points

>and I am sure that if he has no more infections before seeing them that

>if he is listed it will probably be a status 7. The main thing would be

>that he could start accruing his time on the llsit.

>

>Then we met with Kaisers transplant coordinator who went into detail

>about the various things we should watch for as far as getting him to a

>hospital and letting her know so she can notate more points and such.

>Thanks to the group I understood what she was saying very well because

>of the discriptions you all have given in regard to the various

>symptoms. There was some information that we did get from her that we

>found very helpful. I don't think she's really studied Phil's history

>yet because she really didn't know about the problems he has had but

>hopefully she'll study it now and keep up with it. I sat there thinking

>when she was explaining each problem (oh, that's what must have happened

>with Jacquelyn's surgery, or has that, or Biddy had that etc.) I

>can't imagine what it would be like to go through this without the

>knowleged I've gained through the group. I think I would be overwhelmed

>and scared to death.

>

>Biddy, you asked what Phil's symptoms are: The main reason they would

>list Phil is that he had 4 reoccuring infections from 12/28/98-3/23/99.

>His other symptoms are the constricted bile duct that wouldn't allow the

>ERCP to be completed, and the fatigue and some brain fog.

>

>Now, some of the things that the coordinator talked about made me think

>of you. She said that when the liver gets cirrhosed fluid backs up into

>the abdomen and causes bloating and PAIN. She also talked about

>bleeding varacies in the digestive tract. Then the brain fog and

>disorientation - The can give you lactilose or something like that

>(maybe someone can correct me on what the drug is, she said it was a

>liquid) to help the brain fog and that if it got too bad they could

>hospitalize you and actually do a detox on you. Now when she was

>describing it I thought of you. It seems to me that you are in this

>situation. I seriously think you need more help than you are getting. I

>don't like it when someone critisizes the treatment of our doctors but

>it seems like the doctors you are seeing don't have a clue. Can't you

>go somewhere else? Aren't there any agencies that can help you with the

>finances? I feel so bad for you.

>

>We will be praying for you, wish we could do more. Well one of the guys

>from the field is making me get to work so I have to go. I might have a

>few more questions for Tim later.

>Peg

>

>

>

>

>Biddy Santon wrote:

>

> > Hi Peggy! I hope Phil gets on the list -- seems like many on this

> > site are getting a new liver -- what a blessing! My brain fog is

> > getting so very bad, so I have my hubby, , typing this one. What

> > were and are Phil's symptoms? I meant to ask Roy the same about

> > , but forgot! Thanks! Hugs, Biddy

> >

> > Re: Vitiam B12 shotLynn,

> > > My husband Mike gets Vit. B-12 shots every two

> > > weeks and has been doing so for about 6 months

> > > now. He gets them from my family Dr. who is

> > > from England and believes in them. Apparently

> > > people with liver disease need extra It. B , it

> > > is supposed to very good for the liver and other

> > > functions as well. Mike finds that the day

> > > after he gets it he feels a bit draggy and then

> > > it really gives him a pick me up, he feels

> > > stronger after that. His specialist in Halifax

> > > agreed 100% that he get them and a nutrionist

> > > that I spoke with said they would be helpful as

> > > well. It may take awhile for him to feel the

> > > benefit from them.

> > >

> > > Patti

> > >

> > > Vizas wrote:

> > >

> > > > Hello everyone.....A few weeks ago Mikes

> > > > primary doctor gave him a B12

> > > > shot...It really made him feel so much

> > > > better...energy wise. I really didn't

> > > > like Mike doing that without talking to his

> > > > liver doctor. Does anyone get

> > > > these? Does anyone know how it affects the

> > > > liver?

> > > > Lynn

> > > >

> > > > ----

> > > >

>-------------------------------------------------------------------

> > > >

> > > > eGroups.com home:

> > > > /group/

> > > > - Simplifying group

> > > > communications

> > >

> > > -------------------------------------------------

> > > [click here]

> > > Click Here!

> > > eGroups.com home:

> > > /group/

> > > www. - Simplifying group

> > > communications

> > >

> > > -----------------------------------------------------------

> > > [click here]

> > > Click Here!

> > > eGroups.com home: /group/

> > >

> > > www. - Simplifying group communications

> >

> >

> > -------------------------------------------------------------

> > [click here]

> > Click Here!

> > eGroups.com home: /group/

> > www. - Simplifying group communications

> >

> > -----------------------------------------------------------------------

> > [click here]

> > Click Here!

> > eGroups.com home: /group/

> > www. - Simplifying group communications

>

>

>

>

>------------------------------------------------------------------------

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

______________________________________________________

[Guest guest]

Hi Peg,

They give you lactulose (it is a liquid and a laxative) It brings down the

ammonia level in your blood.

>

>Reply-To: egroups

>To: egroups

>Subject: Re: Phil & tx list

>Date: Fri, 15 Oct 1999 15:02:59 -0700

>

>Phil and I went to his liver doctor today. He said Phil's liver

>functions are in the normal range and his alkaline or phosphate levels

>were just slightly elevated and everything is looking good. Now we're a

>little concerned that due to the fact that he hasn't had an infecton in

>6 months that they won't put him on the list. But he is still

>recommending him for listing and we will be meeting with the tx team at

>UCLA and it will be up to them. He said that a lot depends on their

>past experiences for example if they had a previous patient like Phil

>that reoccuring infections and then they had a long period of wellness,

>so they didn't list them and then the person got an infection and died

>(that's a bit drastic of an explanation) they might think more carefully

>about listing Phil. At this time I'm not even sure he has enough points

>and I am sure that if he has no more infections before seeing them that

>if he is listed it will probably be a status 7. The main thing would be

>that he could start accruing his time on the llsit.

>

>Then we met with Kaisers transplant coordinator who went into detail

>about the various things we should watch for as far as getting him to a

>hospital and letting her know so she can notate more points and such.

>Thanks to the group I understood what she was saying very well because

>of the discriptions you all have given in regard to the various

>symptoms. There was some information that we did get from her that we

>found very helpful. I don't think she's really studied Phil's history

>yet because she really didn't know about the problems he has had but

>hopefully she'll study it now and keep up with it. I sat there thinking

>when she was explaining each problem (oh, that's what must have happened

>with Jacquelyn's surgery, or has that, or Biddy had that etc.) I

>can't imagine what it would be like to go through this without the

>knowleged I've gained through the group. I think I would be overwhelmed

>and scared to death.

>

>Biddy, you asked what Phil's symptoms are: The main reason they would

>list Phil is that he had 4 reoccuring infections from 12/28/98-3/23/99.

>His other symptoms are the constricted bile duct that wouldn't allow the

>ERCP to be completed, and the fatigue and some brain fog.

>

>Now, some of the things that the coordinator talked about made me think

>of you. She said that when the liver gets cirrhosed fluid backs up into

>the abdomen and causes bloating and PAIN. She also talked about

>bleeding varacies in the digestive tract. Then the brain fog and

>disorientation - The can give you lactilose or something like that

>(maybe someone can correct me on what the drug is, she said it was a

>liquid) to help the brain fog and that if it got too bad they could

>hospitalize you and actually do a detox on you. Now when she was

>describing it I thought of you. It seems to me that you are in this

>situation. I seriously think you need more help than you are getting. I

>don't like it when someone critisizes the treatment of our doctors but

>it seems like the doctors you are seeing don't have a clue. Can't you

>go somewhere else? Aren't there any agencies that can help you with the

>finances? I feel so bad for you.

>

>We will be praying for you, wish we could do more. Well one of the guys

>from the field is making me get to work so I have to go. I might have a

>few more questions for Tim later.

>Peg

>

>

>

>

>Biddy Santon wrote:

>

> > Hi Peggy! I hope Phil gets on the list -- seems like many on this

> > site are getting a new liver -- what a blessing! My brain fog is

> > getting so very bad, so I have my hubby, , typing this one. What

> > were and are Phil's symptoms? I meant to ask Roy the same about

> > , but forgot! Thanks! Hugs, Biddy

> >

> > Re: Vitiam B12 shotLynn,

> > > My husband Mike gets Vit. B-12 shots every two

> > > weeks and has been doing so for about 6 months

> > > now. He gets them from my family Dr. who is

> > > from England and believes in them. Apparently

> > > people with liver disease need extra It. B , it

> > > is supposed to very good for the liver and other

> > > functions as well. Mike finds that the day

> > > after he gets it he feels a bit draggy and then

> > > it really gives him a pick me up, he feels

> > > stronger after that. His specialist in Halifax

> > > agreed 100% that he get them and a nutrionist

> > > that I spoke with said they would be helpful as

> > > well. It may take awhile for him to feel the

> > > benefit from them.

> > >

> > > Patti

> > >

> > > Vizas wrote:

> > >

> > > > Hello everyone.....A few weeks ago Mikes

> > > > primary doctor gave him a B12

> > > > shot...It really made him feel so much

> > > > better...energy wise. I really didn't

> > > > like Mike doing that without talking to his

> > > > liver doctor. Does anyone get

> > > > these? Does anyone know how it affects the

> > > > liver?

> > > > Lynn

> > > >

> > > > ----

> > > >

>-------------------------------------------------------------------

> > > >

> > > > eGroups.com home:

> > > > /group/

> > > > - Simplifying group

> > > > communications

> > >

> > > -------------------------------------------------

> > > [click here]

> > > Click Here!

> > > eGroups.com home:

> > > /group/

> > > www. - Simplifying group

> > > communications

> > >

> > > -----------------------------------------------------------

> > > [click here]

> > > Click Here!

> > > eGroups.com home: /group/

> > >

> > > www. - Simplifying group communications

> >

> >

> > -------------------------------------------------------------

> > [click here]

> > Click Here!

> > eGroups.com home: /group/

> > www. - Simplifying group communications

> >

> > -----------------------------------------------------------------------

> > [click here]

> > Click Here!

> > eGroups.com home: /group/

> > www. - Simplifying group communications

>

>

>

>

>------------------------------------------------------------------------

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

______________________________________________________

[Guest guest]

This is one of the several criteria for being listed. Normally you need 7 total points to get listed. For PSC patients, as I recall, under 4 on the bilirubin is worth 1 point, over 4 is worth 2 points. I think you get 3 points if it gets over 10, which is really high.

I think most PSC patients have readings that change a lot from week to week or month to month.

Thanks, Roy T.

Phil & tx list

Peg,

I was wondering what Phil's bilirubin count is. When I asked my doctor when

I could be considered for the transplant list, he said not until my bili count

went up. Did anyone else get that as a criteria?

Carol

Click Here! eGroups.com home: /group/www. - Simplifying group communications

[Guest guest]

This is one of the several criteria for being listed. Normally you need 7 total points to get listed. For PSC patients, as I recall, under 4 on the bilirubin is worth 1 point, over 4 is worth 2 points. I think you get 3 points if it gets over 10, which is really high.

I think most PSC patients have readings that change a lot from week to week or month to month.

Thanks, Roy T.

Phil & tx list

Peg,

I was wondering what Phil's bilirubin count is. When I asked my doctor when

I could be considered for the transplant list, he said not until my bili count

went up. Did anyone else get that as a criteria?

Carol

Click Here! eGroups.com home: /group/www. - Simplifying group communications

[Guest guest]

Thanks, Roy. My Dr. didn't bother to mention anything about points or

any other criteria. I hate to say it, but I really doubt that he knows.

That is why I am in the process of changing doctors.

Do you happen to know what the 7 points consist of, or where I could

find out?

Carol

Phil & tx list

Peg,

I was wondering what Phil's bilirubin count is. When I asked my doctor when

I could be considered for the transplant list, he said not until my bili count

went up. Did anyone else get that as a criteria?

Carol

Click Here! eGroups.com home: /group/www. - Simplifying group communications

Click Here! eGroups.com home: /group/www. - Simplifying group communications

[Guest guest]

Thanks, Roy. My Dr. didn't bother to mention anything about points or

any other criteria. I hate to say it, but I really doubt that he knows.

That is why I am in the process of changing doctors.

Do you happen to know what the 7 points consist of, or where I could

find out?

Carol

Phil & tx list

Peg,

I was wondering what Phil's bilirubin count is. When I asked my doctor when

I could be considered for the transplant list, he said not until my bili count

went up. Did anyone else get that as a criteria?

Carol

Click Here! eGroups.com home: /group/www. - Simplifying group communications

Click Here! eGroups.com home: /group/www. - Simplifying group communications

[Guest guest]

Carol,

My doctor told me that some patients have been listed because of fatigue. I

know there is a point system of some sort. My billirubin has never been

elevated and it should have been. My duct was closed off. Anyway I think

alot of the decision is made by your doctor and how ill he feels you are.

When I was hospitalized in August at Yale, every specialist that came in (I

had never seen them before) told me they were going to speak to my doctor

about being listed due to the condition of my ducts. I am going to Yale on

Tuesday to see her so we will see what happens.

>

>Reply-To: egroups

>To: <eGroups>

>Subject: Phil & tx list

>Date: Sat, 16 Oct 1999 12:15:44 -0400

>

>Peg,

>

>I was wondering what Phil's bilirubin count is. When I asked my doctor

>when

>I could be considered for the transplant list, he said not until my bili

>count

>went up. Did anyone else get that as a criteria?

>

>Carol

>

>

>------------------------------------------------------------------------

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

______________________________________________________

[Guest guest]

Carol,

My doctor told me that some patients have been listed because of fatigue. I

know there is a point system of some sort. My billirubin has never been

elevated and it should have been. My duct was closed off. Anyway I think

alot of the decision is made by your doctor and how ill he feels you are.

When I was hospitalized in August at Yale, every specialist that came in (I

had never seen them before) told me they were going to speak to my doctor

about being listed due to the condition of my ducts. I am going to Yale on

Tuesday to see her so we will see what happens.

>

>Reply-To: egroups

>To: <eGroups>

>Subject: Phil & tx list

>Date: Sat, 16 Oct 1999 12:15:44 -0400

>

>Peg,

>

>I was wondering what Phil's bilirubin count is. When I asked my doctor

>when

>I could be considered for the transplant list, he said not until my bili

>count

>went up. Did anyone else get that as a criteria?

>

>Carol

>

>

>------------------------------------------------------------------------

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

______________________________________________________

[Guest guest]

Carol,

My doctor told me that some patients have been listed because of fatigue. I

know there is a point system of some sort. My billirubin has never been

elevated and it should have been. My duct was closed off. Anyway I think

alot of the decision is made by your doctor and how ill he feels you are.

When I was hospitalized in August at Yale, every specialist that came in (I

had never seen them before) told me they were going to speak to my doctor

about being listed due to the condition of my ducts. I am going to Yale on

Tuesday to see her so we will see what happens.

>

>Reply-To: egroups

>To: <eGroups>

>Subject: Phil & tx list

>Date: Sat, 16 Oct 1999 12:15:44 -0400

>

>Peg,

>

>I was wondering what Phil's bilirubin count is. When I asked my doctor

>when

>I could be considered for the transplant list, he said not until my bili

>count

>went up. Did anyone else get that as a criteria?

>

>Carol

>

>

>------------------------------------------------------------------------

>

>eGroups.com home: /group/

> - Simplifying group communications

>

>

>

______________________________________________________

[Guest guest]

Yes, go to the UNOS web site.

www.unos.org

and click "about unos" and then click policies and then click Policy 3.6.

Here is the points system but it may not be spaced for easy reading on email:

Table 1

Child-Turcotte-Pugh (CTP) Scoring System to Assess Severity of Liver Disease

Points

1

2

3

Encephalopathy

None

1 - 2

3 - 4

Ascites

Absent

Slight (or controlled by diuretics)

At least moderate despite diuretic treatment

Bilirubin (mg/dl)

<2

2-3

>3

Albumin (g/dl)

>3.5

2.8-3.5

<2.8

Prothrombin time (secs. prolonged)

<4

4-6

>6

or (INR)

<1.7

1.7-2.3

>2.3

For primary biliary cirrhosis, primary sclerosing cholangitis, or other cholestatic liver diseases:Bilirubin (mg/dl)*

<4

4-10

>10

* For cholestatic liver diseases, these values for bilirubin are to be substituted for the values above.

Phil & tx list

Peg,

I was wondering what Phil's bilirubin count is. When I asked my doctor when

I could be considered for the transplant list, he said not until my bili count

went up. Did anyone else get that as a criteria?

Carol

Click Here! eGroups.com home: /group/www. - Simplifying group communications

Click Here! eGroups.com home: /group/www. - Simplifying group communications

Click Here! eGroups.com home: /group/www. - Simplifying group communications

[Guest guest]

Yes, go to the UNOS web site.

www.unos.org

and click "about unos" and then click policies and then click Policy 3.6.

Here is the points system but it may not be spaced for easy reading on email:

Table 1

Child-Turcotte-Pugh (CTP) Scoring System to Assess Severity of Liver Disease

Points

1

2

3

Encephalopathy

None

1 - 2

3 - 4

Ascites

Absent

Slight (or controlled by diuretics)

At least moderate despite diuretic treatment

Bilirubin (mg/dl)

<2

2-3

>3

Albumin (g/dl)

>3.5

2.8-3.5

<2.8

Prothrombin time (secs. prolonged)

<4

4-6

>6

or (INR)

<1.7

1.7-2.3

>2.3

For primary biliary cirrhosis, primary sclerosing cholangitis, or other cholestatic liver diseases:Bilirubin (mg/dl)*

<4

4-10

>10

* For cholestatic liver diseases, these values for bilirubin are to be substituted for the values above.

Phil & tx list

Peg,

I was wondering what Phil's bilirubin count is. When I asked my doctor when

I could be considered for the transplant list, he said not until my bili count

went up. Did anyone else get that as a criteria?

Carol

Click Here! eGroups.com home: /group/www. - Simplifying group communications

Click Here! eGroups.com home: /group/www. - Simplifying group communications

Click Here! eGroups.com home: /group/www. - Simplifying group communications

[Guest guest]

The other thing is, only a transplant center doctor can list a patient. So if your doctor is not working for a transplant center he can only recommend a patient for evaluation. Seems to me if a patient is borderline then the doctor can recommend the patient for evaluation and let the center decide whether to list. Of course the full evaluation can be a pretty big deal (several days of tests and some expense) so they usually only recommend patients for evaluation when they really need it.

Never hurts to get a second opinion, in any case.

Roy T.

Phil & tx list

Peg,

I was wondering what Phil's bilirubin count is. When I asked my doctor when

I could be considered for the transplant list, he said not until my bili count

went up. Did anyone else get that as a criteria?

Carol

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[Guest guest]

The other thing is, only a transplant center doctor can list a patient. So if your doctor is not working for a transplant center he can only recommend a patient for evaluation. Seems to me if a patient is borderline then the doctor can recommend the patient for evaluation and let the center decide whether to list. Of course the full evaluation can be a pretty big deal (several days of tests and some expense) so they usually only recommend patients for evaluation when they really need it.

Never hurts to get a second opinion, in any case.

Roy T.

Phil & tx list

Peg,

I was wondering what Phil's bilirubin count is. When I asked my doctor when

I could be considered for the transplant list, he said not until my bili count

went up. Did anyone else get that as a criteria?

Carol

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[Guest guest]

The other thing is, only a transplant center doctor can list a patient. So if your doctor is not working for a transplant center he can only recommend a patient for evaluation. Seems to me if a patient is borderline then the doctor can recommend the patient for evaluation and let the center decide whether to list. Of course the full evaluation can be a pretty big deal (several days of tests and some expense) so they usually only recommend patients for evaluation when they really need it.

Never hurts to get a second opinion, in any case.

Roy T.

Phil & tx list

Peg,

I was wondering what Phil's bilirubin count is. When I asked my doctor when

I could be considered for the transplant list, he said not until my bili count

went up. Did anyone else get that as a criteria?

Carol

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[Guest guest]

Thanks again Roy you have been a great source of info. I really

appreciate it and know that it is accurate since you and have

been through it all.

Carol

Phil & tx list

Peg,

I was wondering what Phil's bilirubin count is. When I asked my doctor when

I could be considered for the transplant list, he said not until my bili count

went up. Did anyone else get that as a criteria?

Carol

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[Guest guest]

Carol, bilirubin is 1 of 5 criteria in the CPT score. You need 7

to be listed at status 3 and 10 for status 2B. Nationally about

20% of status 3 and 80% of status 2 are transplanted within 1

year. (New England and New York regions take much longer). So

often status 3 patients wait until they worsen to status 2B and

then get a transplant within months. So some docs conclude that

being listed as a status 3 isn't worth the anxiety and extra

appointments that it involves, so advise waiting until status 2B

is reached.

The CPT score ranges from 5 (normal) to 15 (very little liver

function left) and for PSC patients adds 1 for bilirubin 4-10

and 2 for bilirubin >10. (See table below Carol's post).

Tim

--- C Staples wrote:

> Peg,

>

> I was wondering what Phil's bilirubin count is. When I asked

> my doctor when I could be considered for the

> transplant list, he said not until my bili count

> went up. Did anyone else get that as a criteria?

>

> Carol

Table 1

Child-Turcotte-Pugh (CTP) Scoring System to Assess Severity of

Liver Disease

Points 1 2 3

Encephalopathy None 1 - 2 3 - 4

Ascites Absent Slight At least moderate

despite

(or controlled by diuretic treatment

diuretics)

Bilirubin (mg/dl) <4 4-10 >10

Albumin (g/dl) >3.5 2.8-3.5 <2.8

Prothrombin time <4 4-6 >6

(secs. prolonged)

=====

__________________________________________________

[Guest guest]

Carol, bilirubin is 1 of 5 criteria in the CPT score. You need 7

to be listed at status 3 and 10 for status 2B. Nationally about

20% of status 3 and 80% of status 2 are transplanted within 1

year. (New England and New York regions take much longer). So

often status 3 patients wait until they worsen to status 2B and

then get a transplant within months. So some docs conclude that

being listed as a status 3 isn't worth the anxiety and extra

appointments that it involves, so advise waiting until status 2B

is reached.

The CPT score ranges from 5 (normal) to 15 (very little liver

function left) and for PSC patients adds 1 for bilirubin 4-10

and 2 for bilirubin >10. (See table below Carol's post).

Tim

--- C Staples wrote:

> Peg,

>

> I was wondering what Phil's bilirubin count is. When I asked

> my doctor when I could be considered for the

> transplant list, he said not until my bili count

> went up. Did anyone else get that as a criteria?

>

> Carol

Table 1

Child-Turcotte-Pugh (CTP) Scoring System to Assess Severity of

Liver Disease

Points 1 2 3

Encephalopathy None 1 - 2 3 - 4

Ascites Absent Slight At least moderate

despite

(or controlled by diuretic treatment

diuretics)

Bilirubin (mg/dl) <4 4-10 >10

Albumin (g/dl) >3.5 2.8-3.5 <2.8

Prothrombin time <4 4-6 >6

(secs. prolonged)

=====

__________________________________________________

[Guest guest]

Hi Peg!

I shouldn't have posted yet another discouraging thing about my health. What do I know maybe this is a nightmare and I will wake up in the morning with nothing wrong with me!! If I do I will stay here with all of you and give you lots and lots of hope!!

Another thing Peg, I now have no desire to put up with this any longer. I have given up on my docs and I want to be with my God NOW! I am not afraid, I just don't want any more stress on my husband and my family and friends.

Don't feel sorry for me because I don't need that. All that I need is that all of you keep your hopes up and hopefully most of you will be in 's place soon!

Hugs,

Biddy

Re: Vitiam B12 shotLynn, My husband Mike gets Vit. B-12 shots every two weeks and has been doing so for about 6 months now. He gets them from my family Dr. who is from England and believes in them. Apparently people with liver disease need extra It. B , it is supposed to very good for the liver and other functions as well. Mike finds that the day after he gets it he feels a bit draggy and then it really gives him a pick me up, he feels stronger after that. His specialist in Halifax agreed 100% that he get them and a nutrionist that I spoke with said they would be helpful as well. It may take awhile for him to feel the benefit from them. Patti Vizas wrote: Hello everyone.....A few weeks ago Mikes primary doctor gave him a B12 shot...It really made him feel so much better...energy wise. I really didn't like Mike doing that without talking to his liver doctor. Does anyone get these? Does anyone know how it affects the liver? Lynn ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications

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[Guest guest]

Hi Peg!

I shouldn't have posted yet another discouraging thing about my health. What do I know maybe this is a nightmare and I will wake up in the morning with nothing wrong with me!! If I do I will stay here with all of you and give you lots and lots of hope!!

Another thing Peg, I now have no desire to put up with this any longer. I have given up on my docs and I want to be with my God NOW! I am not afraid, I just don't want any more stress on my husband and my family and friends.

Don't feel sorry for me because I don't need that. All that I need is that all of you keep your hopes up and hopefully most of you will be in 's place soon!

Hugs,

Biddy

Re: Vitiam B12 shotLynn, My husband Mike gets Vit. B-12 shots every two weeks and has been doing so for about 6 months now. He gets them from my family Dr. who is from England and believes in them. Apparently people with liver disease need extra It. B , it is supposed to very good for the liver and other functions as well. Mike finds that the day after he gets it he feels a bit draggy and then it really gives him a pick me up, he feels stronger after that. His specialist in Halifax agreed 100% that he get them and a nutrionist that I spoke with said they would be helpful as well. It may take awhile for him to feel the benefit from them. Patti Vizas wrote: Hello everyone.....A few weeks ago Mikes primary doctor gave him a B12 shot...It really made him feel so much better...energy wise. I really didn't like Mike doing that without talking to his liver doctor. Does anyone get these? Does anyone know how it affects the liver? Lynn ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications

Click Here!eGroups.com home: /group/ www. - Simplifying group communications

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