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Have you thought about a malpractice lawyer for your daughter? I think I read

some where that there is a 30 day time frame, or something like that.

And I hope it's not fetor hepaticus. That's not good news. When's the last time

you have seen the hepatologist?

MaC

Bob Aragon wrote:

I'm pretty sure it's fetor hepaticus. For me, if something quacks, waddles, and

looks just like a duck, I't pretty clear that it's a duck. I've tried to figure

out if it might be a medicine, or a food

but the pattern is clear. I get a sweet taste, sweet foul breath(according to

the resident breath testor) and more foggy that usual, and it's usually when

I'm due for lactulose

or when lactulose hasn't caused those three to four loose stools a day that the

hepatologist wants that it happens. Some times my body will not hardly react to

lactulose at all, other times it has a very drastic result. And let me emphasize

DRASTIC. I think that my daughter will owe over 100,000 in medical bills when

the dust clears. She may be eligable for some charity,

but not much. She works at starbucks, and has a ppo plan, but it won't cover

much. I

think the very negligable hospital should pay the entire bill. If they had

acted sooner there is no doubt that she would have not become this sick, and

therefor the bill wouldn't be as big.

Now, she's not working, has to be on coumadin for 6 months. The bills are just

mounting.

Re: Abijann, Bob and

At least all of that is in the past. Will the State pick up any of the cost

for your daughters hospital stay? I'm not wise on how all that insurance works.

I was lucky I was in the military when my wife became sick.

It's good to know that your are doing so much better. It's wierd you have a

sweet taste and breath. It's not fetor hepaticus is it? Or is it from the

lactulose?

MaC

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Insoon had itching. It was very severe at times. If I remember right the doctor

gave her something for it but it made her very drowsy and she could only take it

before bedtime. She eventually stopped taking it. At the next doctor visit he

gave her something else that made her less drowsy.

She didn't complain much about itching in her last year that I can remember. But

she was taking many medications. And I'm sure one of them was for the itching.

Her sleep pattern eventually went topsy turvy. Some times awake at night, sleepy

during the day. It completely reversed the week or so before she passed.

On top of all that, one week before she was admitted to the hospital, she mowed

the lawn. I came home from work and to my amazement she had the lawn mowed. I

couldn't believe it. You should have seen her. Grinning from ear to ear. At

first I was upset that she exerted herself and all she could say was " didn't

think I could do it, did you? " I'll never forget that.

Of course back then, she would sleep when I got home from work and then wake up

at 3:00 in the morning and start cooking something in the kitchen... I miss that

smell.

Anyway...I've rambled on.

MaC

Bob Aragon wrote:

Wow, How uncanny! My pain doctor , wanting to have a more active role,

prescribed this medication

for itching. (Hydroxyzine)I have mild pruritus from cirrhosis, and was afraid

to take rifampin, or rifampicin, as some

call it, because of it's potential to cause liver failure. I took the pill one

time, but it made me so drowsy

I couldn't stay awake. And I spend so many nights wide awake. So I will ask him

about taking the hydroxyzine before bedtime. Any way, MaC, I do itch. Did Insoon

itch? I am curious how many folks here have this problem.

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Thanks for the compliment.

You're right about your concern. Don't you wish we could all have a Doctor

House? (of course without the attitude) Someone who won't stop until they know

you're well and is not afraid to do something because of their damn hospital

budget or money. I had one doctor tell me that my wife wasn't worth the

$100,000 dollar or so it would cost for the transplant! Can you believe that! I

was almost in shock. So condescending. tsk. tsk. I think his words were " Well,

because of her past behavior, it probably isn't worth the 100 to 200 thousand

dollars to do the transplant when we could give the liver to someone who could

use it. " I said but she's only 31 and you would rather turn around and give it

to a 70 year old before here? I was so upset and not in the best mood to hear

that.

I understand his point but he didn't have to put it in that way. Besides, even

if she continued to drink, studies show that the survival rate is about the

same. The transplant could have given her another 20 years or more. I think I

read somewhere that one of the first successful liver transplant recipients from

the 1980's is still alive!

MaC

MaC

Bob Aragon wrote: I

for one am glad you can't stay away. I couldn't blame you for wanting to move on

to other things, but

It was a very sinking feeling thinking that you'd be gone. I too wish I had

recognized that the doctors

are human and sometimes woefully inadequate. So my experience with Ardis was

sort of training for

what I'm going through. Even though my daughters' mom missed several days of

work last month

she still had to go to work, but I was at the hospital at 8:00 sharp every

morning on the accsessaride

bus. and I diagnosed her blood clots. We told the nurse her arm had

swelled up , and she sent a physician's assistant

in to tell her " well, we could order an x-ray... " I told her " why don't we lean

forward from now on "

" let's not be conservative, lets be aggressive " . Wouldn't you know it, not only

did she have blood clots, she had pulmonary embolisms. I hope I don't sound like

I'm blowing my own horn, but I should not

be the one discovering this stuff. THEY should. I think I learned this attitude

from Abijann. I

check everything. I do not trust them. I've seen too many mistakes.

Re: Abijann

That may not have been a book, but it was definitely a chapter! LOL!

But it was great information. That's a lot to have to worry about and have on

your plate.

I know what you mean about being numb though. When Insoon was sick, it seemed I

was so busy with her illness I worried about the then and now. I didn't want to

face the idea of having a future without her. After she passed, I was numb and

in an emotional haze. It was almost surreal.

When she was sick I tried to get her to do everything the doctors asked.

Thinking they knew best. I wish I could have been a better advocate for her,

been that squeaky wheel. But I think I was too trusting of doctors and didn't

put much thought into the fact that they can make mistakes.

I didn't realize this until it was too late. I think that's what drove me

here to this group. So I could learn more and help others. Which I hope I've

done. And, as you may have noticed, I can't seem to stay away. So I decided to

just incorporate it into my daily schedule.

MaC

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I cannot believe he would say that. I might have hit him. No, if it had been

Sharon, I

would have hit him. I've never hit anyone before and have no plans to start, but

man, that would tempt me. After Ardis died, I had a list of people and places

who were going to get

baseball-sized river rocks through their windows. It was a long list. I learned

through AA

that I had to let go of those resentments. I managed to do just that. It brings

tears to my eyes to think of how young and beautiful Insoon was. I have also

read facts and figures

about alcoholism and hvc both having a risk of recurrence, and I do feel the

sting of

shame for having gotten sick as a result of my alcohol consumption. Today I got

a notice that my long term insurance will only last one year from onset, March.

I have until then

to get well or SSDI. The one year limitation is because the disability is a

result of substance abuse. Don't get me wrong, I know how blessed I am to have

this insurance. Without it,

I don't know what I'd do. We would lose our house for sure. Sharon is a good

wife and

partner and does not deserve that. I hope that I won't be judged too harshly by

the 'medicals' because those around me (family)have let me know how much it 's

my fault. (except the one person who suffered the most as the wife of an

alcoholic, Sharon).

Re: Abijann

That may not have been a book, but it was definitely a chapter! LOL!

But it was great information. That's a lot to have to worry about and have on

your plate.

I know what you mean about being numb though. When Insoon was sick, it seemed I

was so busy with her illness I worried about the then and now. I didn't want to

face the idea of having a future without her. After she passed, I was numb and

in an emotional haze. It was almost surreal.

When she was sick I tried to get her to do everything the doctors asked.

Thinking they knew best. I wish I could have been a better advocate for her,

been that squeaky wheel. But I think I was too trusting of doctors and didn't

put much thought into the fact that they can make mistakes.

I didn't realize this until it was too late. I think that's what drove me

here to this group. So I could learn more and help others. Which I hope I've

done. And, as you may have noticed, I can't seem to stay away. So I decided to

just incorporate it into my daily schedule.

MaC

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The first time my dad went to the hospital with high amonia levels

they treated him...he stay for about 12 days that time..then when it

came time to discharge him, they gave us some papers and then sent us

on our way (this was all new to me...I ASSUMED they knew what they

were doing) I got home and started looking at the papers...they were

all about How To Quit Smoking!!! My dad doesn't even smoke! I called

my brothers and told them and they were angry and wanted me to take

the papers back up there and find out who the idiot was that gave

them to me, but I didn't....we didn't say anything, we should have,

but didn't.

Well, the next time he had to go to the hospital, the nurse came into

the room with a lasix pill...well, my dad has no kidney function...he

doesn't pee at all. He is not supposed to have lasix. So I questioned

them about it. They got mad at me " questioning " them. How dare I? One

of the nurses got really rude with me. Now, I had been up ALL night

in the ER room with my dad and hadn't slept at all. I went off on

her. I unloaded all my frustrations and stress on her...I even told

her about the How to quit smoking papers and then got mad all over

again while telling her about it...lol. Then I cried. After that

incident I didn't see her the rest of the 6 days my dad was in the

hospital and the rest of the nurses were VERY nice to me and my dad

after that.

Another time my brother took my dad in to get his fiscula for

dialysis checked on. Simple procedure. Well, they started trying to

prep him for surgery. My brother said what are you doing...they

started talking about putting a cathater (sp?) in him and all kinds

of crazy stuff. Thank God my brother was there...he told them to get

away from our dad and go find the doctor and bring him back. Turned

out they had his chart mixed up with someone elses!!!! There's no

telling what they would have done to my dad if my brother hadn't been

in the room with him.

We now watch EVERYTHING they're doing to him when he has to go into

the hospital now. We don't let them touch him unless one of us is

near. And we ask them what they're about to do evertime they come in

the room. I don't think they like us much...lol.

~Crystal~

>

> I used to look at the world as a beautiful place to be. That

> no one ever would do anything to hurt someone else. I lived

> in a dream world for so long. I knew of murders and other things,

> but that wasn't done to people I knew, but others who looked to

> be in trouble.

>

> My father was one of the first to have a triple by pass surgery

> for the heart. They originally had sent him home to die, until

> another doctor said that he would do the surgery on him. He

> wasn't to have anymore surgery after that, cause they considered

> his heart to be too weak. After about 7 years, he became ill again.

> The doctor told my step mother, who happened to be a registered

> head nurse, that my father wasn't in any pain and that he just

> had discomfort. I knew my Dad, I could tell he was in pain...he

> never joked about anything like that. I have my regrets now

> that I did not say anything. I trusted the fact the my step

> mother was a nurse and the doctor knew more about this, being a

> professional. They operated on my dad and took out his gallbladder.

> He came out of the surgery in more pain than when he went in.

> I couldn't touch him before this cause he would move away because

> of the pain. My step mother didn't understand this...so she got

> another doctor. That doctor said that the only way he could be

> sure is to go back in to explore. She gave her okay.

> He went back into surgery and came through surgery, but not

> through the recovery. This doctor told her that he thought an

> intern did the operation previously and that if she wanted to

> sue the other doctor, he would back her up. He said there was

> cancer right where they took out the gallbladder and in the

> surrounding areas and there was no way a medical doctor could have

> missed that. (Pancreatic cancer) My regrets of not stressing

> that Dad was in pain no matter what they thought, might of changed

> that. I trusted way too much. However, Dad would have died anyhow,

> but he would of been given more pain medications and not suffered

as

> much. Regret it...it has never left me. So, when my husband became

> ill.....the force inside me was that no one was going to do

> anything to him unless I knew for certain what they were doing

> it for, why they were doing it, and they were going to answer

> to me. All trust was gone and still is. And, you know by

> my posts about having other people with the same name on the

> same transplant list and what happened....that that trust just

> is not there. I would be scared to death to leave any loved one

> totally alone in a setting of strangers who don't really know them.

> They might not intentionally hurt him, but there were way too

> many mistakes for me to ever be comfortable again with that.

>

> The last time my husband was in the hospital, I went over his

> discharge instructions and they had errors on the medication

> he was to be taking once he was home. I went out and showed

> it to the doctor himself and they changed it.

>

> We live in a society where there is too much rushing around and

> not enough double checking on the things we do. There is this,

> " OH, I made a mistake...so shoot me, everyone makes them " attitude.

> When you are dealing with someone's life...that double checking and

> even triple checking is definitely necessary. I about fell through

> the floor the day they came into the hospital room and said

> my husband name and then stated he was receiving B positive blood

> and two nurses where there saying it outloud right in front of

> me and they thought it was so. When I turned around and saw

> what they hung up, I just about flipped out. My husband is not

> B positive and it was just fortunate I was there at the time.

>

> I have a real hard time trusting that things will be right...I

> don't even trust myself, cause I constantly go back over things

> in my head to be sure they are right. Trust should be in God,

> cause he knows our hearts.

>

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Hey Bob,

The reason I asked is because I thought Micronodular was associated with alcohol

hepatitis. Here is an excerpt of what I found.

" Cirrhosis may be divided morphologically into two basic

types: micronodular cirrhosis and macronodular cirrhosis. The

micronodular pattern has uniform regenerative nodules of lobular

size or smaller (3 mm in diameter and less) and in the U.S. is

usually caused by alcohol. In macronodular cirrhosis, the

regenerative nodules are large and irregular in size and shape. The

fibrous septa are often broad. Macronodular cirrhosis corresponds

loosely to the older terms " post-necrotic " or " multilobular "

cirrhosis and in the U.S. is most often seen following chronic

active viral hepatitis. "

Did they test you for hepatitis?

MaC

Bob Aragon wrote:

Macronodular. Piecemeal necrosis. I am hoping and praying. And eating

vegetables.:-)

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Hi,MaC. I saw an article but can't find it now, that explains how in chronic

alcoholic damage to the liver the structure colapses and regenerates, causing

micro to become macro. Heres one tidbit from a search-

beyond the limiting plate, parenchymal collapse, bridging hepatic necrosis and

fibrosis. If untreated,. this may evolve into macronodular cirrhosis

So I think thats why I have macro.

Re: Re: Bob

Hey Bob,

The reason I asked is because I thought Micronodular was associated with alcohol

hepatitis. Here is an excerpt of what I found.

" Cirrhosis may be divided morphologically into two basic

types: micronodular cirrhosis and macronodular cirrhosis. The

micronodular pattern has uniform regenerative nodules of lobular

size or smaller (3 mm in diameter and less) and in the U.S. is

usually caused by alcohol. In macronodular cirrhosis, the

regenerative nodules are large and irregular in size and shape. The

fibrous septa are often broad. Macronodular cirrhosis corresponds

loosely to the older terms " post-necrotic " or " multilobular "

cirrhosis and in the U.S. is most often seen following chronic

active viral hepatitis. "

Did they test you for hepatitis?

MaC

Bob Aragon <robwalkingeagle@ yahoo.com> wrote:

Macronodular. Piecemeal necrosis. I am hoping and praying. And eating

vegetables.: -)

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Bob,

Ardis choose her path, you didnt do anything wrong. You gave your friend what

she wanted, that s being a good friend. You did the best you could under a VERY

difficult situation, a lot of people would have just baled. You didnt leave, you

were there for her. You did the right thing hun.

I m soo freakin happy about Sharon, give her a hug for me & tell her to give

you one.

God bless you both, I think your awesome.

love,

tilly

Bob Aragon wrote:

Every time I took Ardis to the hospital, she had severe withdrawal

symptoms.

Back then I was ignorant of what that even meant. It is a painful realization

that I could have spared her much pain if I had pulled a doctor aside and told

him the truth.( with HIPPA they would not have even listened, I'm sure) It was a

rotten,crazy situation. She wanted to drink, I loved her, so I provided the

booze, and then sat by her side in the hospital, with all the regrets in the

world, not to mention being in total denial. By the way, Sharon is home and

resting on the couch right here next to me!!!!:-) Yipeeee!!!

Tilly

They will know that she is drinking again. Her blood tests will

tell them this. Especially, if they knew to begin with that this

was her problem. There is no way around it. That is why I

tell people who drink, don't say to them that you didn't...cause

a few tests will show you are lying and may cause you not to

be placed on the list if you cannot be trusted. Most of the

time they can tell users of drugs, but usually they are the

narcotic ones they test for not the standard prescription medication

that someone gets, unless it goes toxic in their blood. It would be

great if she told them on her own, so they don't accidentally give her

a drug that interacts with what she took....but, considering the

condition she is in, that probably isn't going to happen unless the

family does it.

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Thanks.

I think liver research has come a long way. I wouldn't be surprised if in the

next 15-20 years they find away to remove the scar tissue or prevent fibrosis

from occurring in the first place.

MaC

Bob Aragon wrote:

I've always been interested in science. Being a horticulturist has trained me to

think scientifically. If you remember the article about how sulfasalizine is

thought to work, it is along the lines you mention. Causing the scar tissue to

dissolve and be absorbed. I think it's awesome that you have such an interest

in this and believe me, it does help. It helps more than you'll ever know.

Re: Re: Bob

Wow!

You've given me something to read about. One, how weather affects pain

management and two, how the body absorbs scar tissue. The skin does this easily.

And from what I've read, they are be able to produce hepatocytes from skin

cells. So the future is, if we can " teach " hepatocytes " to act like skin cells

(at fibrosis) then maybe fibrosis can be prevented from occurring.

Thanks Bob,

And before anyone starts saying, " get a life etc " I do like researching things.

Especially when it's difficult. Even at work, I'm always the " guy " who finds the

answer.

It may not help you any, but none-the-less. ...

MaC

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Sharon is doing much better tonight. Thank you all.

Bob

How is Sharon doing. I just came from your blog and was shocked

to see she had to go back to the hospital by ambulance in pain.

I saw that you posted here after that. I hope they can find

out what is wrong and treat her right away.

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I quit three different times last year. Once in july, when I was taking care of

Ardis in the hospital and started to have liver pain, then I drank again heavily

starting August 3rd, when she died, after a month I quit again and had dt's and

encephalopathy together, became suicidal, the ER at our university hospital

discharged me with a stern " you need to quit drinking " which just enraged Sharon

because no one suggested how. After one more week of heavy drinking I checked

into detox on September 15th and haven't been to work since that day and haven't

had a drink since that day either. I kept telling my doctor that I had liver

disease, and she kept telling me that I didn't. Every time I drank a beer, my

palms turned bright red with translucent white spots, and my fingernails were

ghostly white. When a doctor reasures a diabetic that they aren't diabetic,

they will eat sugar.

Bob

How many years did you drink alcohol? I was reading recently that

by just stopping alcohol intake for one week, will bring down the

AST enzyme level to about half on the blood work. Do you mind me

asking how long it has been since you stopped?

I'm in the process now of reading more into how alcohol affects

the liver cells themselves. The ALT is found basically in

the cytoplasm of the cell, the liquid portion where all the

organelles are found. The AST is found in the mitochondria

of the cells, where the cell makes energy in order to function.

So, this means to me that the alcohol is toxic to the mitochondria

and destroy the ability of the cell to produce energy it needs

to function. It releases this AST into the blood then and

is picked up on lab tests. Did you ever have chemistry in

college? I know a little, but not everything.. .so maybe you

can fill in all the gaps I have or maybe someone else can.

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