New here.....

[Guest guest]

Hi,

My name is Candy. My younger brother has just been diagnosed with

cirrhosis from alcoholism. Unfortunately, his wife won't give us (his

family) much information, or she's not asking the right questions.

My brother started drinking when he was 16, he's 49 now. When he was

43, he had a total hip replacement, unknown cause. The ball of the

hip joint was wearing away.

When he was 47, he contracted West Nile virus. He had a seizure and

was taken to the hospital. Of course, he started going through

alcohol withdrawal and the seizures continued. The hospital didn't

know how to treat him, so he was transferred to a university hospital

several hours away. He eventually recovered, but never back to 100%.

He continued to be very, very tired and slept most of the time he

wasn't at work. His neurologist said he sustained brain damage from

the seizures. He started drinking again after coming home from 4

weeks in the hospital.

The next year, he lost 40 lbs., but continued to have a big stomach.

His hair thinned to the point of being almost bald. He lost a lot of

muscle mass. Everyone noticed how he aged. His short term memory is

gone.

In October of last year, his company closed and he lost his high

paying job. Luckily, he has a sizeable 401k to pay the bills for a

while. In December, he sustained an abdominal hernia. Being without

health insurance, he refused to have it repaired.

Last month, he became very jaundiced and his wife convinced him to go

to the ER. They did some blood work and a CT scan of his liver. We

were told he has cirrhosis, shrinkage and nodules, with ascites. They

admitted him to the CCU unit and he again went through alcohol

withdrawal, with hallucinating and confusion, for 9 days. They

removed 16 liters of fluid from his abdomen. They mentioned a transplant.

Since he doesn't have health insurance, they sent him home as soon as

he could walk again. They told him about a surgery called TIPS, where

the blood flow through the liver would be re-routed. He's on a low

salt, low protein diet. He sleeps most of the day.

His wife says she doesn't have any more information about his

prognosis. For the moment, he's not drinking. I've read on the

internet that once ascites sets it, the prognosis is poor.

Can anyone here point me in the right direction to try to determine if

he's dying or how much time he has? There are no liver doctors in our

city, he's only seeing an internist. Without health insurance, I'm

sure he's not going to get the best care. He's not eligible for

Medicaid because of his 401k. He's filing for disability, but that

will take at least 2 years.

I don't understand why his wife is withholding information, or maybe

she's just too afraid to ask the doctor, I really don't know.

Thank you.

Candy

[Guest guest]

Hi, Candy. My name is Bobby, and I have end stage liver disease from alcoholism.

I am very sorry to hear about your brother. You come to us much more informed

about his disease than most. This can work to your advantage, but will not

shelter you from the pain and frustration. Some folks find that having their

head down far in the sand is more comfortable then here in reality where people

we love are rapidly dying from terminal illness. You are right about his

prognosis. After ascites, 50 percent of people die within 2 years. He is

eligable for SSDI and it doesn't need to take anything close to two years. There

are two ways he could get aproved quick, but his application has to be right on

the money. I will post more about that this evening. If your brother is wlling

to abstain from alcohol, he can be elibable for a transplatnt in six months. He

should be referred to a hepatologist. Welcome to our group. You have found a

great group of compationate people. Love, Bobby, moderator, LCS Yahoo.

Sent via BlackBerry from T-Mobile

New here.....

Hi,

My name is Candy. My younger brother has just been diagnosed with

cirrhosis from alcoholism. Unfortunately, his wife won't give us (his

family) much information, or she's not asking the right questions.

My brother started drinking when he was 16, he's 49 now. When he was

43, he had a total hip replacement, unknown cause. The ball of the

hip joint was wearing away.

When he was 47, he contracted West Nile virus. He had a seizure and

was taken to the hospital. Of course, he started going through

alcohol withdrawal and the seizures continued. The hospital didn't

know how to treat him, so he was transferred to a university hospital

several hours away. He eventually recovered, but never back to 100%.

He continued to be very, very tired and slept most of the time he

wasn't at work. His neurologist said he sustained brain damage from

the seizures. He started drinking again after coming home from 4

weeks in the hospital.

The next year, he lost 40 lbs., but continued to have a big stomach.

His hair thinned to the point of being almost bald. He lost a lot of

muscle mass. Everyone noticed how he aged. His short term memory is

gone.

In October of last year, his company closed and he lost his high

paying job. Luckily, he has a sizeable 401k to pay the bills for a

while. In December, he sustained an abdominal hernia. Being without

health insurance, he refused to have it repaired.

Last month, he became very jaundiced and his wife convinced him to go

to the ER. They did some blood work and a CT scan of his liver. We

were told he has cirrhosis, shrinkage and nodules, with ascites. They

admitted him to the CCU unit and he again went through alcohol

withdrawal, with hallucinating and confusion, for 9 days. They

removed 16 liters of fluid from his abdomen. They mentioned a transplant.

Since he doesn't have health insurance, they sent him home as soon as

he could walk again. They told him about a surgery called TIPS, where

the blood flow through the liver would be re-routed. He's on a low

salt, low protein diet. He sleeps most of the day.

His wife says she doesn't have any more information about his

prognosis. For the moment, he's not drinking. I've read on the

internet that once ascites sets it, the prognosis is poor.

Can anyone here point me in the right direction to try to determine if

he's dying or how much time he has? There are no liver doctors in our

city, he's only seeing an internist. Without health insurance, I'm

sure he's not going to get the best care. He's not eligible for

Medicaid because of his 401k. He's filing for disability, but that

will take at least 2 years.

I don't understand why his wife is withholding information, or maybe

she's just too afraid to ask the doctor, I really don't know.

Thank you.

Candy

[Guest guest]

Bobby,

I'm so sorry to hear about your illness, my heart goes out to you.

I'm grateful for your advice and the chance to learn.

It's so incredibly aggravating when my brother and his wife have such

an unconcerned attitude. If he's likely got only 2 years, he needs to

know that. But it needs to come from a doctor, and I'm afraid he

won't pursue a liver doctor. His internist told him that livers

regenerate (which they do), but at his stage??? Something tells me,

probably not.

I've attempted several times to tell his wife that she needs the

advice of a SS attorney, but it goes right over her head. I do

realize I have no rights in this situation, but it's so difficult to

keep my mouth shut. I'm always going to be his big sister, it's hard

to put it in the background and defer to his wife. I've always gotten

along with her, but in this situation, I completely disagree with the

way this is being handled.

I look forward to participating here. Thanks so much, and I'm sending

a hug to you.

Candy

>

> Hi, Candy. My name is Bobby, and I have end stage liver disease from

alcoholism. I am very sorry to hear about your brother. You come to us

much more informed about his disease than most. This can work to your

advantage, but will not shelter you from the pain and frustration.

Some folks find that having their head down far in the sand is more

comfortable then here in reality where people we love are rapidly

dying from terminal illness. You are right about his prognosis. After

ascites, 50 percent of people die within 2 years. He is eligable for

SSDI and it doesn't need to take anything close to two years. There

are two ways he could get aproved quick, but his application has to be

right on the money. I will post more about that this evening. If your

brother is wlling to abstain from alcohol, he can be elibable for a

transplatnt in six months. He should be referred to a hepatologist.

Welcome to our group. You have found a great group of compationate

people. Love, Bobby, moderator, LCS Yahoo.

[Guest guest]

Thank you Candy. I learned a powerful important lesson in life from a fellow

alcoholic who did not make it. She was /is my best friend in the whole world. My

wife and I were the only family she had, and had to make her medical decisions

for her. She had developed hepatic encephalopathy, which is from toxins not

getting properly filtered causing complete dementia. One time I walked into her

hospital room and she was having a conversation with me , only she was talking

to the tv remote instead of her cell phone. I won't trouble you with her story

but you can read it here if you like.

http://billybobswildride.blogspot.com/

http://robertwalkingeagle.googlepages.com/home

There is a chance that your brother doesn't even know what is happening to him.

Encephalopathy is like not knowing if you dreampt everything, or it really

happened. His wife might be to afraid to come to grips with the truth. His

internist should know better than to downplay this. Yes, the liver can

regenerate, but that is why cirrhosis happens. Repeat scarring causes scar

tissue to build up over and over and over until there are little round balls of

liver but they are not connected like they used to be, and blood cannot flow

through like it used to . This is why they do TIPS. to keep people from bleeding

to death from the elevated portal pressure. There are cases of people who quit

drinking and their liver heals, and regenerates normal, and they never need a

transplant. But ascites is when the chronic formation of fibrous scar tissue

cause the disease to go from chronic back toward acute. I hope you can get his

wife to come to terms with this enough to

get him to a hepatologist. The standard of care is:referral for liver

transplant after decompensation. Your brother is decompensated. That is also one

of the criteria for SSDI. The levels of disability that get a person first time

approval are pretty difficult to meet and still be above ground, but

decompensated liver disease is probably going to probably meet them.

http://health.ph.groups.yahoo.com/group/livercirrhosissupport/photos/browse/2c64\

?b=17 & m=t & o=0

http://www.mayoclinicproceedings.com/inside.asp?AID=1044 & UID=

http://www.disabilitysecrets.com/

http://www.newliver.info/cirrhosis.html

Re: New here.....

Bobby,

I'm so sorry to hear about your illness, my heart goes out to you.

I'm grateful for your advice and the chance to learn.

It's so incredibly aggravating when my brother and his wife have such

an unconcerned attitude. If he's likely got only 2 years, he needs to

know that. But it needs to come from a doctor, and I'm afraid he

won't pursue a liver doctor. His internist told him that livers

regenerate (which they do), but at his stage??? Something tells me,

probably not.

I've attempted several times to tell his wife that she needs the

advice of a SS attorney, but it goes right over her head. I do

realize I have no rights in this situation, but it's so difficult to

keep my mouth shut. I'm always going to be his big sister, it's hard

to put it in the background and defer to his wife. I've always gotten

along with her, but in this situation, I completely disagree with the

way this is being handled.

I look forward to participating here. Thanks so much, and I'm sending

a hug to you.

Candy

>

> Hi, Candy. My name is Bobby, and I have end stage liver disease from

alcoholism. I am very sorry to hear about your brother. You come to us

much more informed about his disease than most. This can work to your

advantage, but will not shelter you from the pain and frustration.

Some folks find that having their head down far in the sand is more

comfortable then here in reality where people we love are rapidly

dying from terminal illness. You are right about his prognosis. After

ascites, 50 percent of people die within 2 years. He is eligable for

SSDI and it doesn't need to take anything close to two years. There

are two ways he could get aproved quick, but his application has to be

right on the money. I will post more about that this evening. If your

brother is wlling to abstain from alcohol, he can be elibable for a

transplatnt in six months. He should be referred to a hepatologist.

Welcome to our group. You have found a great group of compationate

people. Love, Bobby, moderator, LCS Yahoo.

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