Re: Test Results are back ..

February 18, 2011

Bobby you have said this before about the suffering which comes with a

transplant, or am I misreading you. Unlike some or even most here i

have options that i can die from, heart , kidney, liver, or maybe my

blood will just get so low that I will die of that. Since I don't

qualify for a transplant, I hope I die of one of the other things,

first preference is a heart attack in the middle of the night won't

even know anything is going to happen. it seems to me that those of

you who qualify for a transplant probably won't suffer as long as

those who die of it. Yes, the surgery is not great, I am sure the

incision is probably longer than the one I had for my heart bypass, or

at least that size. If you are in pain now, it will only get worse

before your body just gives up. if you can have a transplant, you

have a chance of having it before your symptoms get quite so bad, and

after you recover from the surgery, you will have a chance for a

fairly normal life. If the choice were pain from the surgery, or pain

from dying of the disease, if there weren't any other considerations

such as the fact I am 67 years old, I will leave the organs for

younger people and of course the fact that I don't qualify because of

the aforementioned medical problems. Am I making sense or am I

responding to something which wasn't said. Jan

> I dont think you are wrong at all. I know some who were sicker after the

> transplant, and others who went right up to the edge, and then got well, and

> live a normal life. Real, one of our members here went to the hospital,

> feeling really not too bad at all, but her number was called, and she got her

> liver, then a complication put her back in the hospital, and she nearly died,

> and said that she was so so much sicker after the transplant. Now she is fine

> that I know of. My dear loved one Ardis choose to drink like a fish, and she

> didnt last very long, and really was sick for only about two years, really

> unable to enjoy life for about two months. I think about it all the time, and

we

> have these kind of talks all the time. I am like you. It's the suffering I

don't

> think I can do. Last weekend I was in so much pain, I dont think I have ever

had

> pain like that even after surgery! This is despite morphine for my pain. I

could

> eat a pound of it on days like that, but it wouldnt make any difference. Bob

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Thu, February 17, 2011 4:28:06 PM

> Subject: Re: Test Results are back ..

>

> Kind of off the subject, but I have serious doubts about going the transplant

> option. I have had several friends recently waiting on the list, and they are

> so sick. When I think of going through the near end waiting on the list, the

> reality of having a successful transplant, but eventually reaching that

extreme

> sickness again. Just seems like going near to the end twice. Once will be to

> many for me. Am I wrong or misinformed. Not meaning to be a bummer, but just

> curious about that.

> Dave

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Thu, February 17, 2011 2:20:06 PM

> Subject: Re: Test Results are back ..

>

> Any individual can start thier own group. Adding people seemed kind of hard,

> cause I tried to add Penny and some others here, but it woldnt recognize that

> she is in my friend list. Others in my friend list popped right up when I

> clicked " add people to this group " . I would assume that if you look up me on

> face book, you could join from my page, or yo might need to " request " friends

> with me. No problem. though, just send the request and Ill add you.

>

> Without pissing off to many people, just let me say that you are being fed a

> line of poopoo. , Jackie's husband had to have chemo in order to make his

> liver cancer tumors smaller, and only then wouold they do a transplant. Thier

> thinking is that the cancer spreads after it reaches a certain size, and if

they

>

> get the tumors to shrink, it would buy him time to get a liver transplant

before

>

> his tumor spreads outside the liver. It is true that in the US, certain cancer

> will disqualify you for a transplant. BUT, primary liver cancer if it is

smaller

>

> than 5 CM will GET you a transplant, and in fact send you to the front of the

> line. When they say that chemo or radiation WILL kill you, how do they know?

Do

> they know your MELD score? or Childs PUGH score? Did they base this assesment

on

>

> those scores? If not, how would they know that you are dying? When I get this

> kind of malfeasance going on, I always get a second opinion. I have been to a

> few quacks, and always FIRE them, and let a real doctor take over. What your

> doctor said sounds very cynical, and it sounds as if you are not worth their

> time, cause you are just going to die anyway. WOW. That is a shitty attitude.

> Sorry. Love, Bobby

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Thu, February 17, 2011 9:21:06 AM

> Subject: Re: Test Results are back ..

>

> Bobby I found the memorial page on facebook for and put in a friends

> request, is this right or is it different being a group than an individual

> person?

>

> And since this is my place for information I need some. I had a colonoscopy,

> routine as my mother had bowel cancer. Well I apparently had a few polyps this

> time and one of them came back positive for cancer. They know they did not get

> all of it because the polyp did not have clean edges. Now the doctor who looks

> after this for me and who has for years said that he will not go back in and

get

>

> the rest of it till my cirrosos doctor tells him it is okay. And that I can

> understand, but he said that other than physically removing as much as they

can

> by disection he would never do chemo or radiation or any other therapy on me

as

> I would not survive it.

> And basically said that since I am dying anyway and the cirrosis will kill me

> faster than bowel cancer I should try and just forget about it. Is this the

> norm? Has anyone been treated successfully for cancer when they are in ESLD? I

> have not yet met with a transplant team but he also said that having cancer

> would make me unacceptable for a transplant. Is this true? I know that being a

> Canuck things are different north of the border but basically all of the info

I

> have recieved here has helped me here a lot. I guess illness doesn't know

about

> borders.

>

> As always thanks a million everyone, Joan

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Thu, February 17, 2011 1:28:38 AM

> Subject: Re: Test Results are back ..

>

> Here is what I know on the subject. The pancreas is what produces digestive

> juices so we can digest food. These juices would digest us, except that they

mix

>

> together at just the right strength and time, and inject them in to the

> digestive tract.

> http://en.wikipedia.org/wiki/Pancreas

> People who do not have a pancreas do not do very well. Life gets very

> complicated with out one. Love, Bobby

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Wed, February 16, 2011 5:57:18 PM

> Subject: Re: Test Results are back ..

>

> Can you live without a pancreas? Lyncia

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Wed, February 16, 2011 6:55:47 PM

> Subject: Re: Test Results are back ..

>

> Great to hear no hep virus. I would probably ask the dr. if they

> couldn't just take out that pancreas, and then take insulin shots for

> a normal level of insulin. But then he might look at me as if I were

> crazy. It is especially important for someone in your situation to

> get help with somethig like this since yo have people depending on

> you. Not to say everybody with it isn't important in some way. This

> disease has changed my life in so many ways, and amazingly quite a few

> of them have been for the better. I have 4 grown children, 14

> grandchildren and 1 great grandson. And the children especially still

> need help, and I have been able to have 2 grandchildren stay with me

> for periods of time as they moved from childhood to adulthood. An

> intermediate step from home with mom to home of their own. There are

> blessings to be found. I am sure it will bring your family closer

> together as you all pull to work this out. And of course prayers for

> all of you. That is almost a given here as everybody is in need of

> prayer as we ride this roller coaster of life with liver disease. Jan

>

> On Wed, Feb 16, 2011 at 5:42 PM, donnywilliams2006

> wrote:

>> Hey Friends

>> I got my test results back on Friday..I dont have hep. A or B or c thank

>>GOD...I have to go and get shots to prevent me from getting those and test

shows

>>

>>the reason i have cirrosis is my body is insulin resistance and my pancreas is

>>producing too much insulin and my liver cant get rid of the sugar and that

what

>

>>caused the fatty liver to develop...I am very worried and I dont know what to

>>expect...but I know GOD has a plan and he will never forsake me . I know he

can

>

>>and will heal me ....so please pray for me and my family I have 2 young

>>children and wife that depend on me everyday.

>>

>> Thanks !!

>>

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

>>

>> Group Email: livercirrhosissupport

>> web address:

>> http://groups.yahoo.com/group/livercirrhosissupport/

>>

February 18, 2011

I ended up in the er a few years ago thinking I was having a heart

attack. Doctors thought so too. Blood work showed it was lack of

electrolytes and I was badly dehydrated, which can cause a heart

attack, but i wasn't having one. When he said i was dehydrated, i

said how can you be dehydrated when you drink at least 60+ ounces of

water a day. he said because my body was acting line a hose, in the

mouth and out the other end without ever being of use to my body.

Since then I have taken about three different electrolyte

supplements.But, by that time they had caused my veins to flip flop

and are hard to find when they want to put in an iv or draw blood.

Jan

> Dear June,

> Has your brother been diagnosed with hepatic encephalopathy? It could be part

of

> the reason for his unreasonable demeanor. Telling him how wrong about the salt

> restriction seems like a no go for you, even though you are right. Kidneys

hold

> on to the salt, and salt likes water. That is exactly what my hepatologist

told

> us.

> Even if you drink less water, which is really bad unless the doctor tells you

to

> do that, the body will still retain water. Drinking water actually flushes out

> your kidneys which are doing extra duty with filtering since the liver is

> impaired. The can take on some extra filtering, which would normally be the

job

> of the liver, but they cant replace the liver totally. This is where

> encephalopathy comes in. If your brother is not drinking enough water, his

> electrolytes can get out of balance. Humans are basically a big battery.

Nerves

> are just wires, and everything runs off the ability to transmit signals

through

> them. If your brother cannot follow the doctors instructions, them

unfortunatly

> he will end up hospitalized, and having his electrolytes balanced by IV. A

> cirrhotic patient can end up with 50 gallons of fluid built up in the belly

and

> technically dehydrated, needing infusions of potassium, and other

electrolytes.

> What a mess. Good luck, love, Bobby

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Fri, February 18, 2011 6:10:05 AM

> Subject: Re: Test Results are back ..

>

> The critical problem with my brother is that he

> doesn't trust anyone. He is starting to like his

> doctor, but thinks the dr. is a mindreader who

> should know what he needs without him having

> to share his symptons. He is an untreated

> schizophrenic who normally refuses any help

> he doesn't seek himself. He thinks the dr. is

> wrong about limiting his salt intake, as long

> as his water is down, he sees no harm in re-

> stricting his salt intake.

> Yesterday he told me that if this is how he's

> gonna have to live (in pain) he's not going to

> do it. He didn't say suicide, and knowing this

> is a standard line of his (has never attempted

> suicide) I don't give it much weight.

> There's no telling him anything. He gets annoyed

> and immediately puts me in my place. (like

> I need or deserve that).

> Sorry, just venting my frustration.

>

>> Hey Friends

>> I got my test results back on Friday..I dont have hep. A or B or c thank

>>GOD...I have to go and get shots to prevent me from getting those and test

shows

>>

>>the reason i have cirrosis is my body is insulin resistance and my pancreas is

>>producing too much insulin and my liver cant get rid of the sugar and that

what

>

>>caused the fatty liver to develop...I am very worried and I dont know what to

>>expect...but I know GOD has a plan and he will never forsake me . I know he

can

>

>>and will heal me ....so please pray for me and my family I have 2 young

>>children and wife that depend on me everyday.

>>

>> Thanks !!

>>

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

>>

>> Group Email: livercirrhosissupport

>> web address:

>> http://groups.yahoo.com/group/livercirrhosissupport/

>>

February 18, 2011

dave,

my name is beverly i have been on the list since dec 2009,i take so much

medicine i am beging to lose track.but i have been having the same thought as

you what ifÂ i don't get the tp which right now seems it is going to be a long

time and i feel worse everyday.god is the only one who decides when our time is

up with or wthout the tp.so i guess we just have to make the the choice and hope

its the right one.

take care

bev,tx

________________________________

To: livercirrhosissupport

Sent: Fri, February 18, 2011 6:50:56 AM

Subject: Re: Test Results are back ..

Â

Dear June,

Has your brother been diagnosed with hepatic encephalopathy? It could be part of

the reason for his unreasonable demeanor. Telling him how wrong about the salt

restriction seems like a no go for you, even though you are right. Kidneys hold

on to the salt, and salt likes water. That is exactly what my hepatologist told

us.

Even if you drink less water, which is really bad unless the doctor tells you to

do that, the body will still retain water. Drinking water actually flushes out

your kidneys which are doing extra duty with filtering since the liver is

impaired. The can take on some extra filtering, which would normally be the job

of the liver, but they cant replace the liver totally. This is where

encephalopathy comes in. If your brother is not drinking enough water, his

electrolytes can get out of balance. Humans are basically a big battery. Nerves

are just wires, and everything runs off the ability to transmit signals through

them. If your brother cannot follow the doctors instructions, them unfortunatly

he will end up hospitalized, and having his electrolytes balanced by IV. A

cirrhotic patient can end up with 50 gallons of fluid built up in the belly and

technically dehydrated, needing infusions of potassium, and other electrolytes.

What a mess. Good luck, love, Bobby

________________________________

To: livercirrhosissupport

Sent: Fri, February 18, 2011 6:10:05 AM

Subject: Re: Test Results are back ..

The critical problem with my brother is that he

doesn't trust anyone. He is starting to like his

doctor, but thinks the dr. is a mindreader who

should know what he needs without him having

to share his symptons. He is an untreated

schizophrenic who normally refuses any help

he doesn't seek himself. He thinks the dr. is

wrong about limiting his salt intake, as long

as his water is down, he sees no harm in re-

stricting his salt intake.

Yesterday he told me that if this is how he's

gonna have to live (in pain) he's not going to

do it. He didn't say suicide, and knowing this

is a standard line of his (has never attempted

suicide) I don't give it much weight.

There's no telling him anything. He gets annoyed

and immediately puts me in my place. (like

I need or deserve that).

Sorry, just venting my frustration.

> Hey Friends

> I got my test results back on Friday..I dont have hep. A or B or c thank

>GOD...I have to go and get shots to prevent me from getting those and test

shows

>

>the reason i have cirrosis is my body is insulin resistance and my pancreas is

>producing too much insulin and my liver cant get rid of the sugar and that what

>caused the fatty liver to develop...I am very worried and I dont know what to

>expect...but I know GOD has a plan and he will never forsake me . I know he can

>and will heal me ....so please pray for me and my family I have 2 young

>children and wife that depend on me everyday.

>

> Thanks !!

>

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

>

> Group Email: livercirrhosissupport

> web address:

> http://groups.yahoo.com/group/livercirrhosissupport/

>

February 18, 2011

hi bobby,

i agree we are the only ones that knows when something is not with our bodys not

the drs.or the one that gets me is the people that say i am soryy i no how you

feel.they have no clue because they are not fighting this battle.everyone tells

me i have the top notch drs. here in houston but i still call them on alot of

stuff.thats why we need these groups to share our feelings and problems.

god bless

bev,tx

________________________________

To: livercirrhosissupport

Sent: Thu, February 17, 2011 10:21:13 PM

Subject: Re: Test Results are back ..

Â

I do not understand what could possibly be the harm in sharing with the doctor a

complication, such as an uncomfortable thing as a stomach cramp. I write down

all my aches and pains, and funny happenings. Some of them were missed, and I

was misdiagnosed as not having liver disease.

So far I have been diagnosed with biliary diskinesia when cirrhosis was really

the culprit.

I have been diagnosed with having a " sore back " when it was a fracture on the 8

anterolateral rib,

and diagnosed with a cold when I had hepatopulmonary syndrome.

Every bit of information is a tiny piece of the puzzle. Maybe if you read this

post to your brother, he might change his mind. These doctors are only human.

They have a very hard job, and we sbhould do all we can to help them out. After

all it is in our best interest.

But I guess it is his business in the end. Scientifically, I have never heard of

cramping in the stomach as a part of liver disease itself. The stomach is

connected to the digestive tract, so I guess they are related, but I really have

nothing else besides that.

Love, Bobby

________________________________

To: livercirrhosissupport

Sent: Thu, February 17, 2011 7:40:31 PM

Subject: Re: Test Results are back ..

I thank God for all of you. Everything you share gives me insight into what my

brother is dealing with and what lies ahead. My question for you all is this:

is severe stomach cramping associated with this disease. My brother was

complaining about it today, but resistant to my suggestion that he ask his

doctor.

> Hey Friends

> I got my test results back on Friday..I dont have hep. A or B or c thank

>GOD...I have to go and get shots to prevent me from getting those and test

shows

>

>the reason i have cirrosis is my body is insulin resistance and my pancreas is

>producing too much insulin and my liver cant get rid of the sugar and that what

>caused the fatty liver to develop...I am very worried and I dont know what to

>expect...but I know GOD has a plan and he will never forsake me . I know he can

>and will heal me ....so please pray for me and my family I have 2 young

>children and wife that depend on me everyday.

>

> Thanks !!

>

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

>

> Group Email: livercirrhosissupport

> web address:

> http://groups.yahoo.com/group/livercirrhosissupport/

>

February 18, 2011

I guess it is the ultimate personal choice, as to going on the list, and

eventually being fortunate to get one, and tolerate it, and have a happy ending

to the saga.Â I just learned of the loss of another friend today, and have

another now in a long term care facility.Â My friends and self lived a growing

up in the 60's,Â etc. life.Â We are now seeing the result of our fast and loose

lifestyle.Â The saying 'they were the best of times, and the worse of times'

apply.Â I would chooseÂ to goÂ in my sleep from anÂ heart attack, also.Â But,

asÂ I

fear that end the least, I will likely not go out that way.Â My family knows I

choose not to have a transplant and, in the past,Â I have told my doctor I do

not

want to be evaluated forÂ one.Â I want to live and enjoy my daughter and

grandson

as long as possible, but being able to enjoy them, and them me, is my

priority.Â Â I am 60 and have lived a full and adventurous life.Â I am

fortunate

in thatÂ way.Â I am at peace with my decision.Â I am very thankful for the

group,

as empathy is much more healing than sympathy.Â All of you are important to

me.Â

My hat is most off to Bobby, for his research and knowledge, and ability to

share that knowledge so readily.Â Thank you all.Â

Â Dave

________________________________

To: livercirrhosissupport

Sent: Fri, February 18, 2011 11:44:53 PM