Re: Visited with my brother yesterday.....

March 28, 2008

I've heard of individuals with cirrhosis losing muscle mass but not becoming

emaciated. My wife took Lactulose and other duiretics and they didn't do that.

At the beginning of disease she did lose a lot a weight and looked quite ill.

But the weight came back.

MaC

nwohiopma wrote: Hello

everyone,

As a reminder, my brother was admitted to the hospital several weeks

ago for jaundice. He was diagnosed with cirrhosis with ascites. He

has all of the major and some of the minor symptoms. His wife isn't

giving us much information.

On Easter Sunday, he started vomiting. His doctor was called and he

was advised to go to the ER. He refused. He doesn't have health

insurance.

He called his doctor on Monday, was scheduled for an ultrasound of the

liver and gall bladder Tuesday. He vomited more on Monday and

Tuesday. He said the vomiting stopped. He denies any bleeding.

I went to see him yesterday and I'm still in shock. He's complete

emaciated. He reminds me of how my grandfather looked right before he

died. It's only been 10 days since I saw him when he was in the hospital.

His wife said it's because he's on Lasix, it keeps the fluids out,

making him look bad.

Does anyone here have any experience with emaciation? Since we don't

have much information, I'm getting really worried.

Thanks so much.

Candace

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

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March 28, 2008

Hi MaC,

Thanks for your reply.

In the 10 days since I saw him in the hospital, the change in him is

dramatic. His wife insists that the Lasix has removed all the excess

fluid and that's why he looks so drawn. She said he weighs 155 lbs.,

which is what he weighed when he was 18. They did remove 16 lbs. of

fluid while he was in the hospital.

Yesterday, he looked like he's starving to death, a walking skeleton.

He is eating and staying on his diet. Hopefully, he'll put some

weight back on too. The results of the ultrasound showed no change, I

was told tonight. But, he went to the doctor by himself, and he's not

mentally all there anymore. His wife says she'll be calling the

doctor on Monday to be sure he's telling her everything.

It would be so much better if we could trust her to tell us

everything, but she hasn't, and I don't think she will in the future.

Thanks again,

Candace

>

> I've heard of individuals with cirrhosis losing muscle mass but not

becoming emaciated. My wife took Lactulose and other duiretics and

they didn't do that.

> At the beginning of disease she did lose a lot a weight and looked

quite ill.

> But the weight came back.

>

> MaC

March 28, 2008

Hi, Candy. I am so sorry that this is happening to your brother. I think it is

unconscionable for anyone to trust a person with advanced liver disease to go to

the doctor by themselves. One definite thing that does happen with

encephalopathy is 'confabulation'. This happened to Ardis more than once. It was

in her record that she had been drinking a fifth of whisky a day. I knew her for

9 years, and knew that she absolutely HATED whiskey. Now had it said vodka

tonic, or long island ice tea, or especially peppermint schnapps, I would have

not made a stink, but I knew that she had made it up. Now why she would tell

them that is a mystery. My wife knows better than to leave me alone in a doctors

office. Our friend Aimee nearly sank her own transplant chances two days before

her liver came because someone interviewed her late at night and she cheerfully

told the interviewer that she had been drinking alcohol. It took some quick

explaining, and protest by her

husband to undo that damage, or they might have taken her off of the list. When

I was hospitalized in July last year one morning during rounds, the same doctor

I had it out with over Ardis' alleged whiskey drinking came into my room with

the large team of doctors( it is a university setting, and they do health care

by large 2nd and 3rd year resident teams) and I followed her into the hall

after they were done rounding to apologize for my conduct, but she said that she

didnt hold anything against me, that she believed that I was just sticking up

for my friend. It is so important that liver patients not be left alone with

doctors. I learned early on, because when Ardis was transfered to a floor during

one of her many stays for encephalopathy, she was answering all the questions

that the floor nurse was asking like she was someone else completely. She told

them that she was there for a bladder infection. And the nurse believed her! And

I couldnt explain

to the nurse that Ardis was not oriented without hurting Ardis' feelings. It

was awful. I truly wish something could be done for your brother.

Re: Visited with my brother yesterday.....

Hi MaC,

Thanks for your reply.

In the 10 days since I saw him in the hospital, the change in him is

dramatic. His wife insists that the Lasix has removed all the excess

fluid and that's why he looks so drawn. She said he weighs 155 lbs.,

which is what he weighed when he was 18. They did remove 16 lbs. of

fluid while he was in the hospital.

Yesterday, he looked like he's starving to death, a walking skeleton.

He is eating and staying on his diet. Hopefully, he'll put some

weight back on too. The results of the ultrasound showed no change, I

was told tonight. But, he went to the doctor by himself, and he's not

mentally all there anymore. His wife says she'll be calling the

doctor on Monday to be sure he's telling her everything.

It would be so much better if we could trust her to tell us

everything, but she hasn't, and I don't think she will in the future.

Thanks again,

Candace

>

> I've heard of individuals with cirrhosis losing muscle mass but not

becoming emaciated. My wife took Lactulose and other duiretics and

they didn't do that.

> At the beginning of disease she did lose a lot a weight and looked

quite ill.

> But the weight came back.

>

> MaC

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March 29, 2008

Hi Bobby,

I completely agree, he shouldn't be driving at all, and certainly

shouldn't be going to the doctor by himself. I'm not sure of the

details why.

I do know that they tried to get a gastroenterologist instead of an

internist, but since they don't have health insurance, the gastro

doctor wanted cash, which they couldn't do.

This is a nightmare. Thanks for your support.

Candy

>

> Hi, Candy. I am so sorry that this is happening to your brother. I

think it is unconscionable for anyone to trust a person with advanced

liver disease to go to the doctor by themselves. One definite thing

that does happen with encephalopathy is 'confabulation'. This happened

to Ardis more than once. It was in her record that she had been

drinking a fifth of whisky a day. I knew her for 9 years, and knew

that she absolutely HATED whiskey. Now had it said vodka tonic, or

long island ice tea, or especially peppermint schnapps, I would have

not made a stink, but I knew that she had made it up. Now why she

would tell them that is a mystery. My wife knows better than to leave

me alone in a doctors office. Our friend Aimee nearly sank her own

transplant chances two days before her liver came because someone

interviewed her late at night and she cheerfully told the interviewer

that she had been drinking alcohol. It took some quick explaining, and

protest by her

> husband to undo that damage, or they might have taken her off of

the list. When I was hospitalized in July last year one morning during

rounds, the same doctor I had it out with over Ardis' alleged whiskey

drinking came into my room with the large team of doctors( it is a

university setting, and they do health care by large 2nd and 3rd year

resident teams) and I followed her into the hall after they were done

rounding to apologize for my conduct, but she said that she didnt hold

anything against me, that she believed that I was just sticking up for

my friend. It is so important that liver patients not be left alone

with doctors. I learned early on, because when Ardis was transfered to

a floor during one of her many stays for encephalopathy, she was

answering all the questions that the floor nurse was asking like she

was someone else completely. She told them that she was there for a

bladder infection. And the nurse believed her! And I couldnt explain

> to the nurse that Ardis was not oriented without hurting Ardis'

feelings. It was awful. I truly wish something could be done for your

brother.

>

March 30, 2008

Excellent MaC!

Praying for you and your brother !

Pamela

Re: Visited with my brother yesterday.....

Hey ,

You are in a tough place. You want to be an advocate but your brother wants to

be private at a time that is difficult for him and he may be shielding

information not only from you, but from his wife as well. That may be the reason

why she doesn't have any information to offer. She could be very well be in the

dark as well. Especially if he is going to appointments by himself. (only my

thoughts)

I'm a bit concerned that he didn't go to the ER stating he didn't have

insurance. You normally don't need insurance for the ER so....is there another

reason he wouldn't want to be seen? He could possibly be in denial about many

aspects of the disease. This is common. The doctor he was referred to wanted

cash which he couldn't pay? But he is being seen by an internist? Who's paying

the internist? Sorry, I'm not trying to be personal or anything. Was just trying

to figure out how he is seeing one doctor but that doctor can't refer him?

With a life threating illness this is very suspect and can be borderline

malpractice. (I'm not a lawyer by the way, I just read crap.) But it could be,

if at anytime, he sees his " internist " and there is a life threatening condition

and that " doctor " does not refer him to a specialist that has more knowledge and

experience than himself/herself that could treat the patient and prevent or

prolong death with advanced medicine, he may be subject to criminal liability.

I'm also worried about his diet especially if he has lost so much weight that

he is looking the way you describe. For an alcoholic patient with cirrhosis, the

first thing is to eliminate alcohol. Has your brother done that? And are you

sure? If doctor visit results are hidden, so are other things. Malnutrition is

commonplace in individuals with cirrhosis when the cause is mainly from alcohol.

He should be encourage to eat everything GREEN!!!!! Drink plenty of water.

Stay away from gatorade, juices etc unless approved by a doctor. Keep red meat

to a minimum. Maybe two to three times a month. and at normal portions. About

3oz a serving. Protein can come from other means like legumes(beans) or other

natural means. But please consult a doctor or nutritionist first.

I know there isn't much you can do, since it's ALL in his hands. My only

advice would be, that when you both talk, YOU don't focus on the disease. He's

doing enough of that himself. Focus on him and you. Talk to him as a sister, how

you love him, how you hated (or loved) what he did when he was young etc.( I

know I bugged the crap out of my sister!) But, DON'T focus on the disease. It's

not as important as HE is. So, next time you talk to him, and I mean truly to

talk to him, like you mean it! Focus on him and not what you feel he should do.

Tell him you love him and support him. Hopefully, just maybe, he will open up

enough to share.

Sorry if I was long winded.

Always,

MaC

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

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March 31, 2008

Hi ,

Thanks so much for your reply.

I feel he should be going to AA and getting psychological help too,

but he won't hear of it. Even if he was drowning in money right now,

I would bet he STILL wouldn't go. Stubborn is his middle name.

Most people can't stop drinking (or doing drugs) without some kind of

professional help. If they don't want help, we have to accept it, but

it's hard to sit on the sidelines and watch them deteriorate. It

makes me feel selfish and guilty.

Thanks again.

Candy

>

> AWWW CANDY,

> I had to tell you ( even thu I just ' lurk' most of the time)

that your not alone & your feelings ARE valid. I know how

scared,helpless & frustrated you must feel. It's normal & ok hun.

> I'm Tilly or & I went thru the same thing with my

stepsister last yr. She was FINE, She could take care of herself !!!!

TOTAL DENIAL ! Even when she looked & acted so sick & was living in

sqauller. She couldn't quit using drugs & alcohol either. I wanted to

help her so badly & I'd tried for yrs but I couldn't. I loved her like

a REAL sister. Broke my heart.

> She passed away Dec.31.

> It sounds like your brother has quit drinking thu. That's a very

good sign!

> . Maybe you could look up some assistance on the net & print out

the phone #s or sites for him? He might not be capable of finding them

himself. Just casually slip it to him or his wife when no ones

looking. The state & county DOESN'T want to take his house but sadly,

when you're sick, you lose things. But he needs help & he'll probly

need more.

> I wish you luck sweetie, I'll keep you in my prayers.

> warm hugs,

> tilly

March 31, 2008

Hi MaC,

I have mentioned the lactulose to his wife, but she just blew me off,

said it's permanent damage from the West Nile. His neurologist said

the damage is to the frontal lobe, and I've read that's where the

damage occurs from encephalopathy. It could be both, but they won't

know until they try.

I'm looking forward to your encephalopathy post. Thanks.

Candy

>

> Well it seems everything is being done what can be done. I forgot

you had mentioned the west nile before. It could very likely be that

he's suffering from encephalopathy. I would encourage his wife to

engage the doctor about prescribing lactulose. Shouldn't be expensive

and will definitely help.

> I am going to post more on the subject a little later for anyone

else who might be dealing with encephalopathy.

>

> MaC

March 31, 2008

Thank you, Pamela.

This is the only place I can come for support. My Mom and other

brother are ignoring the problem (too painful for them!), and my

husband just says to DEAL WITH IT.

Typing out my feelings helps.

Candy

>

> Excellent MaC!

>

> Praying for you and your brother !

>

> Pamela

March 31, 2008

Candy, I am so glad this group is helpful. I don't know if you have ever read

Ardis' story, but I am putting a link here. She told me way back in 2004 that

she only had 4 years to live. That she was dying of a terminal ilness. At the

time, I did not know that if she had jumped up, and demanded a transplant

evaluation and attended AA , she would be given a second chance at life.

Although that life would be filled with forever doctor visits, and daily

immunosupression drugs, and never neverever again a cold brewski. I am far down

the other road. The road with the liver transplant. I had my 6 month CT scan

last Thursday. I'm allergic to the contrast so it isnt as routine as it is for

" normal " folks. I have to take huge doses of prednisone for a day before and all

these drugs make me ill for a couple of days. I am not sure that the road she

chose looks a heck of a lot better. At this point if you told me " you can drink

beer for 4 more years and then you

die " I dont know that I would choose that.

Our instincts shout " live life, don't die, stay here " but we are all in a race

to the grave just like it says in the Pink Floyd song " breath " . I am so sorry

that you are in such turmoil over your brother's denial. Today, I wish for you

peace. And please remember, this is what I tell my own family members when

things get bad around here " there is very little you can do to make things

better, but trust me when I tell you, there are many many things you can do to

make things worse. "

http://robertwalkingeagle.googlepages.com/home

Re: Visited with my brother yesterday.....

Thank you, Pamela.

This is the only place I can come for support. My Mom and other

brother are ignoring the problem (too painful for them!), and my

husband just says to DEAL WITH IT.

Typing out my feelings helps.

Candy

>

> Excellent MaC!

>

> Praying for you and your brother !

>

> Pamela

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April 1, 2008

Hi....

I did visit your website and read Ardis' story. It was a real dose of

reality.

I hope you feel bettter from the CT drugs soon...and you have just

given me very wise advice - not to make things worse.

It's just so hard for me to live with the elephant in the living room.

There's so much more that can be done for my brother, but it's not my

choice.

Suffering drives me nuts.

Candy

>

> Candy, I am so glad this group is helpful. I don't know if you have

ever read Ardis' story, but I am putting a link here. She told me way

back in 2004 that she only had 4 years to live. That she was dying of

a terminal ilness. At the time, I did not know that if she had jumped

up, and demanded a transplant evaluation and attended AA , she would

be given a second chance at life. Although that life would be filled

with forever doctor visits, and daily immunosupression drugs, and

never neverever again a cold brewski. I am far down the other road.

The road with the liver transplant. I had my 6 month CT scan last

Thursday. I'm allergic to the contrast so it isnt as routine as it is

for " normal " folks. I have to take huge doses of prednisone for a day

before and all these drugs make me ill for a couple of days. I am not

sure that the road she chose looks a heck of a lot better. At this

point if you told me " you can drink beer for 4 more years and then you

> die " I dont know that I would choose that.

> Our instincts shout " live life, don't die, stay here " but we are all

in a race to the grave just like it says in the Pink Floyd

song " breath " . I am so sorry that you are in such turmoil over your

brother's denial. Today, I wish for you peace. And please remember,

this is what I tell my own family members when things get bad around

here " there is very little you can do to make things better, but

trust me when I tell you, there are many many things you can do to

make things worse. "

>

> http://robertwalkingeagle.googlepages.com/home

April 1, 2008

Thanks for reading it, Candy. I always tell people that when they read it, it

takes away some of my pain. So many people have posted here that they really

truly read it, that I feel much more healed today. I can enjoy only the good

memories, and leave all the sorrow out. I hope I didn't offend you. I am not

advocating total hands off, you must think this through, and decide what will be

of best benefit to your brother. Sharon and I both agree that not many people

would have a couple of folks around to catch them when they fall, while they go

about drinking and deteriorating, and being repeatedly hospitalized. The mere

fact that we are having this dialog lends credence to my belief that I was not

just offering a home, and helping hand to a friend, but that she was God's

messenger, sent here to help a lot of people learn a better way to live.

Countless people in my life have stopped or moderated their drinking of alcohol.

Many are changing the way they

view health, and their health care. So, I am glad that I found a mix in which I

was able to accomplish several things: she was loved. We both truly loved this

woman, and we were both crushed when she died. 2 she was able to enjoy her

social seceurity for the short time she was here after our gov saw fit to

release it. 3 She was safe , warm and dry. She didnt die under a bridge

somewhere, or in the biting cold that came shortly after she died. I hope that

because of Ardis' message to the world, you can find a way to help your brother

get help, and that maybe they will soften their hearts enough to let you help. I

know that Ardis was totally resistant until really bad encephalopathy had set

in. Maybe your brother will reach some kind of point in a similar fashion. At

the very least, you can try to convey love to him, now while you can. and then

you will not suffer so much when he dies. His wife is another story. There is

the makings here for some really

powerful resentments. I really really wish you well in this, and I hope and

pray for you and your brother, and your family. Bobby