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Re: Recent diagnosis of cirrohosis of the liver

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Posted
Posted

Sandy, the lactolose is to get the ammonia out of his system. It

binds with the ammonia and causes loose stools. However, I am not

sure they have to be so loose he needs to wear diapers. You might

want to talk to your doctor about taking 1 1/2 instead of 2. Also,

cutting down on protein will help to decrease the amount of ammonia

your body creates. If the ammonia is allowed to run wild in the body,

it can go through the membrame surrounding the brain, and then it

affects the memory, reasoning, etc. I had two episodes of hepatitic

encephalopathy which is what they call it when the ammonia gets

through. I had mixed up two different places in one case and two

different times in the other. In 13 years I have not had another

episode since I lowered the amount of protein I eat daily. My doctor

told me 40 grams, nutritionist said 60. I make sure I don't have more

than 40 in meat and then I have some left over for protein in

vegetables, etc. When you start researching, it is amazing how many

foods have protein in them. Eventually, he will have to meet with a

transplant evaluation team. Some gastrologists think they can handle

cirrhosis, but in my opinion, if you qualify for a transplant, you

should get evaluated as soon as possible. I don't qualify, but I

didn't accept that verdict until I heard it from a transplant doctor,

at least here in Arizona. And since I am 68 now, I think it only fair

a younger person get the benefit, not me, Jan

> Hi Everybody.

>

> I'm purely stumped by this disease. My husband was diagnosed as having

> cirrohosis of the liver on July 3 of this year. They did testing while he

> was in the ER, stating that yes he had it, along with acites, and of course

> they looked at his left leg and foot because it was swollen. They admitted

> him and kept him 2 days, with no other testing except for blood work. At

> the end of the 2nd day, his Dr poked her head into his hospital room doorway

> and said they were 'sending him home'. He came home with 2 prescriptions

> for antibiotics, with instructions to see his PCP, and to get a referral to

> a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> him to a Gastro who will see him on Monday at 2:45 pm.

>

> One of the things that has me stumped is that they've put him on 2

> tablespoons of lactulose 3 times a day, which makes him have to wear a

> diaper because he can't make it to the bathroom in time without soiling his

> clothes. The smell is horrendous and just makes me nauseated when he does

> have a bowel movement. Without the lactulose, he seems to not be able to go

> to the bathroom.

>

> Any words of encouragement would be greatly appreciated. I'm past the

> point of understanding much at this point.

>

> Thanks,

> Sandy

>

> --

> When people show you who they are the first time........Believe them!

>

>

>

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Posted
Posted

sandy,

the lactolose is a must take for liver disease.it will smell bad because it is

getting rid of all the toxins that the liver can not get rid of by itself

because of the damage to the liver.do you live in tx?i live in houston.have been

diagnosed with alcohol cirrhosis since 2008 i am on the tp list since 2009.this

is a great website to get information.

god bless

bev tx

 

To: livercirrhosissupport

Sent: Saturday, July 23, 2011 8:56 PM

Subject: Recent diagnosis of cirrohosis of the liver

 

Hi Everybody.

I'm purely stumped by this disease. My husband was diagnosed as having

cirrohosis of the liver on July 3 of this year. They did testing while he

was in the ER, stating that yes he had it, along with acites, and of course

they looked at his left leg and foot because it was swollen. They admitted

him and kept him 2 days, with no other testing except for blood work. At

the end of the 2nd day, his Dr poked her head into his hospital room doorway

and said they were 'sending him home'. He came home with 2 prescriptions

for antibiotics, with instructions to see his PCP, and to get a referral to

a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

him to a Gastro who will see him on Monday at 2:45 pm.

One of the things that has me stumped is that they've put him on 2

tablespoons of lactulose 3 times a day, which makes him have to wear a

diaper because he can't make it to the bathroom in time without soiling his

clothes. The smell is horrendous and just makes me nauseated when he does

have a bowel movement. Without the lactulose, he seems to not be able to go

to the bathroom.

Any words of encouragement would be greatly appreciated. I'm past the

point of understanding much at this point.

Thanks,

Sandy

--

When people show you who they are the first time........Believe them!

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Posted
Posted

Hi, my name is Bobby. I was diagnosed with end stage liver disease after seeing

my best friend in the whole world Ardis die from it. Both if us got it from

drinking, and I was able to stop after her death and have been sober going on 5

years.

Your post brings back the past to me, because it sounds a lot like how Ardis

would go in to the hospital, and they would get her blood work to stabilize, and

then send her home ... 13 time in one year!!

When I was diagnosed, the very first thing I did was seek a transplant

evaluation. I was told that my liver was well compensated, and there was no need

for a transplant, but then later on things changed a bit. I was told that i have

other serious complications, but that they would monitor the situation and if my

complications became severe enough, I would become eligible for an expedited

transplant. I am not sure why you were told to go see a gastro interologist.

My advice is that a gastro interologist is a last resort, only if there are no

large hospitals in your area, or no transplant centers nearby. Then it would be

understandable. A liver specialist is the right choice for the treatment of

liver disease.

Lactulose is for the treatment of hepatic encephalopathy. Many of us here take

it on a regular basis. My loved one Ardis was also on it. She had encephalopathy

so bad that she did not know where she was at times, and thought that the year

was 1973! Lactulose converts certain toxins so that they can be eliminated in

the bowel movement, since the liver cannot do this effectively any more. Was

your husband experiencing altered personality in the hospital? If not, a high

ammonia reading might have cause the doctors to prescribe this. It is more

common to see a person become altered mentally, but occasionally they are

normal, but have a high ammonia reading. Did the hospital staff explain this to

you?

Many folks come on this group and say that their doctors keep them in the

dark. Love, Bobby

________________________________

To: livercirrhosissupport

Sent: Sat, July 23, 2011 9:56:38 PM

Subject: Recent diagnosis of cirrohosis of the liver

Hi Everybody.

I'm purely stumped by this disease. My husband was diagnosed as having

cirrohosis of the liver on July 3 of this year. They did testing while he

was in the ER, stating that yes he had it, along with acites, and of course

they looked at his left leg and foot because it was swollen. They admitted

him and kept him 2 days, with no other testing except for blood work. At

the end of the 2nd day, his Dr poked her head into his hospital room doorway

and said they were 'sending him home'. He came home with 2 prescriptions

for antibiotics, with instructions to see his PCP, and to get a referral to

a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

him to a Gastro who will see him on Monday at 2:45 pm.

One of the things that has me stumped is that they've put him on 2

tablespoons of lactulose 3 times a day, which makes him have to wear a

diaper because he can't make it to the bathroom in time without soiling his

clothes. The smell is horrendous and just makes me nauseated when he does

have a bowel movement. Without the lactulose, he seems to not be able to go

to the bathroom.

Any words of encouragement would be greatly appreciated. I'm past the

point of understanding much at this point.

Thanks,

Sandy

--

When people show you who they are the first time........Believe them!

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Posted
Posted

Thanks for all the info. Sorry I've not responded sooner, but life has been

'very fast paced' lately. I have been doing a lot of reading though, on

everything I can get my hands on about liver problems. Hubby finally had 6

liters removed from his abdomen last Tuesday and he said by the time the 3rd

liter was drained, he felt instant relief. This coming Wednesday he has an appt

to get a upper GI so they can look for the problems in the esophagus, and into

his stomach. They did more blood work this past Tuesday at the Gastro and said

they were checking for Cancer, HepC, and some other things that I can't remember

right now. What a month this has been! The Gastro did tell him to cut down to

twice a day at a lessor amt on the lactulose, and that has helped tremendously.

His main complaint at this time is not tasting food or it just tastes bad to

him, and his inability to sleep. Apparently he's just napping, which I'd hope

the fluid relief would have helped with. Not so.

> > Hi Everybody.

> >

> > I'm purely stumped by this disease. My husband was diagnosed as having

> > cirrohosis of the liver on July 3 of this year. They did testing while he

> > was in the ER, stating that yes he had it, along with acites, and of course

> > they looked at his left leg and foot because it was swollen. They admitted

> > him and kept him 2 days, with no other testing except for blood work. At

> > the end of the 2nd day, his Dr poked her head into his hospital room doorway

> > and said they were 'sending him home'. He came home with 2 prescriptions

> > for antibiotics, with instructions to see his PCP, and to get a referral to

> > a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> > him to a Gastro who will see him on Monday at 2:45 pm.

> >

> > One of the things that has me stumped is that they've put him on 2

> > tablespoons of lactulose 3 times a day, which makes him have to wear a

> > diaper because he can't make it to the bathroom in time without soiling his

> > clothes. The smell is horrendous and just makes me nauseated when he does

> > have a bowel movement. Without the lactulose, he seems to not be able to go

> > to the bathroom.

> >

> > Any words of encouragement would be greatly appreciated. I'm past the

> > point of understanding much at this point.

> >

> > Thanks,

> > Sandy

> >

> > --

> > When people show you who they are the first time........Believe them!

> >

> >

> >

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Posted
Posted

Thanks for the info Bobby. We live in Houston, Tx & his dr is going to refer

him, but I'm not sure why he has not yet? The first thing the dr told us when

he walked into the room was that 'he'd killed his liver' drinking. He did

mention another referral to a liver specialist, but I'm guessing is just waiting

on the testing to come back. I had tried to talk hubby into letting me take him

downtown to one of the hospitals where they would have a liver specialist but he

got VERY bull headed and declined, stating he would just go to this Dr and wait

to see what they said.

>

> Hi, my name is Bobby. I was diagnosed with end stage liver disease after

seeing

> my best friend in the whole world Ardis die from it. Both if us got it from

> drinking, and I was able to stop after her death and have been sober going on

5

> years.

> Your post brings back the past to me, because it sounds a lot like how Ardis

> would go in to the hospital, and they would get her blood work to stabilize,

and

> then send her home ... 13 time in one year!!

> When I was diagnosed, the very first thing I did was seek a transplant

> evaluation. I was told that my liver was well compensated, and there was no

need

> for a transplant, but then later on things changed a bit. I was told that i

have

> other serious complications, but that they would monitor the situation and if

my

> complications became severe enough, I would become eligible for an expedited

> transplant. I am not sure why you were told to go see a gastro interologist.

>

>

> My advice is that a gastro interologist is a last resort, only if there are no

> large hospitals in your area, or no transplant centers nearby. Then it would

be

> understandable. A liver specialist is the right choice for the treatment of

> liver disease.

>

>

> Lactulose is for the treatment of hepatic encephalopathy. Many of us here take

> it on a regular basis. My loved one Ardis was also on it. She had

encephalopathy

> so bad that she did not know where she was at times, and thought that the year

> was 1973! Lactulose converts certain toxins so that they can be eliminated in

> the bowel movement, since the liver cannot do this effectively any more. Was

> your husband experiencing altered personality in the hospital? If not, a high

> ammonia reading might have cause the doctors to prescribe this. It is more

> common to see a person become altered mentally, but occasionally they are

> normal, but have a high ammonia reading. Did the hospital staff explain this

to

> you?

>

> Many folks come on this group and say that their doctors keep them in the

> dark. Love, Bobby

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Sat, July 23, 2011 9:56:38 PM

> Subject: Recent diagnosis of cirrohosis of the liver

>

>

> Hi Everybody.

>

> I'm purely stumped by this disease. My husband was diagnosed as having

> cirrohosis of the liver on July 3 of this year. They did testing while he

> was in the ER, stating that yes he had it, along with acites, and of course

> they looked at his left leg and foot because it was swollen. They admitted

> him and kept him 2 days, with no other testing except for blood work. At

> the end of the 2nd day, his Dr poked her head into his hospital room doorway

> and said they were 'sending him home'. He came home with 2 prescriptions

> for antibiotics, with instructions to see his PCP, and to get a referral to

> a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> him to a Gastro who will see him on Monday at 2:45 pm.

>

> One of the things that has me stumped is that they've put him on 2

> tablespoons of lactulose 3 times a day, which makes him have to wear a

> diaper because he can't make it to the bathroom in time without soiling his

> clothes. The smell is horrendous and just makes me nauseated when he does

> have a bowel movement. Without the lactulose, he seems to not be able to go

> to the bathroom.

>

> Any words of encouragement would be greatly appreciated. I'm past the

> point of understanding much at this point.

>

> Thanks,

> Sandy

>

> --

> When people show you who they are the first time........Believe them!

>

>

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Posted
Posted

The toxins responsible for encephalopathy have a profound effect on sleep

patterns. In some ways it is like a head injury. There can be subtle memory loss

and nothing more, all the way up to and including a total loss of short term

memory, ability to sleep at night and inability to stay awake during the day,

agitation, anger issues, inappropriate behavior, false memories, and even

something called " confabulation " which is elaborate story telling or recall of

memories which are totally false and have no basis in the truth. I also have the

bad tasting food thing. I also get bad tastes in my mouth, so I keep lots of

little snacks on hand to nibble on. Bobby

________________________________

To: livercirrhosissupport

Sent: Fri, July 29, 2011 2:03:09 PM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

Thanks for all the info. Sorry I've not responded sooner, but life has been

'very fast paced' lately. I have been doing a lot of reading though, on

everything I can get my hands on about liver problems. Hubby finally had 6

liters removed from his abdomen last Tuesday and he said by the time the 3rd

liter was drained, he felt instant relief. This coming Wednesday he has an appt

to get a upper GI so they can look for the problems in the esophagus, and into

his stomach. They did more blood work this past Tuesday at the Gastro and said

they were checking for Cancer, HepC, and some other things that I can't remember

right now. What a month this has been! The Gastro did tell him to cut down to

twice a day at a lessor amt on the lactulose, and that has helped tremendously.

His main complaint at this time is not tasting food or it just tastes bad to

him, and his inability to sleep. Apparently he's just napping, which I'd hope

the fluid relief would have helped with. Not so.

> > Hi Everybody.

> >

> > I'm purely stumped by this disease. My husband was diagnosed as having

> > cirrohosis of the liver on July 3 of this year. They did testing while he

> > was in the ER, stating that yes he had it, along with acites, and of course

> > they looked at his left leg and foot because it was swollen. They admitted

> > him and kept him 2 days, with no other testing except for blood work. At

> > the end of the 2nd day, his Dr poked her head into his hospital room doorway

> > and said they were 'sending him home'. He came home with 2 prescriptions

> > for antibiotics, with instructions to see his PCP, and to get a referral to

> > a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> > him to a Gastro who will see him on Monday at 2:45 pm.

> >

> > One of the things that has me stumped is that they've put him on 2

> > tablespoons of lactulose 3 times a day, which makes him have to wear a

> > diaper because he can't make it to the bathroom in time without soiling his

> > clothes. The smell is horrendous and just makes me nauseated when he does

> > have a bowel movement. Without the lactulose, he seems to not be able to go

> > to the bathroom.

> >

> > Any words of encouragement would be greatly appreciated. I'm past the

> > point of understanding much at this point.

> >

> > Thanks,

> > Sandy

> >

> > --

> > When people show you who they are the first time........Believe them!

> >

> >

> >

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Posted
Posted

i don't know where in houston you are located but i live in jersey village off

290w.my liver dr is at memorial hermann med. ctr. his name is dr micheal

fallon,tx liver center he is the greatest he takes time with me explains things

so i can understand,and believe me i ask alot of questions his staff is the best

they have become like family.so if your husband has a change of mind just tell

them beverly hurlock recomended you.his office #.

BEV,TX

To: livercirrhosissupport

Sent: Friday, July 29, 2011 1:17 PM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

 

Thanks for the info Bobby. We live in Houston, Tx & his dr is going to refer

him, but I'm not sure why he has not yet? The first thing the dr told us when

he walked into the room was that 'he'd killed his liver' drinking. He did

mention another referral to a liver specialist, but I'm guessing is just waiting

on the testing to come back. I had tried to talk hubby into letting me take him

downtown to one of the hospitals where they would have a liver specialist but he

got VERY bull headed and declined, stating he would just go to this Dr and wait

to see what they said.

>

> Hi, my name is Bobby. I was diagnosed with end stage liver disease after

seeing

> my best friend in the whole world Ardis die from it. Both if us got it from

> drinking, and I was able to stop after her death and have been sober going on

5

> years.

> Your post brings back the past to me, because it sounds a lot like how Ardis

> would go in to the hospital, and they would get her blood work to stabilize,

and

> then send her home ... 13 time in one year!!

> When I was diagnosed, the very first thing I did was seek a transplant

> evaluation. I was told that my liver was well compensated, and there was no

need

> for a transplant, but then later on things changed a bit. I was told that i

have

> other serious complications, but that they would monitor the situation and if

my

> complications became severe enough, I would become eligible for an expedited

> transplant. I am not sure why you were told to go see a gastro interologist.

>

>

> My advice is that a gastro interologist is a last resort, only if there are no

> large hospitals in your area, or no transplant centers nearby. Then it would

be

> understandable. A liver specialist is the right choice for the treatment of

> liver disease.

>

>

> Lactulose is for the treatment of hepatic encephalopathy. Many of us here take

> it on a regular basis. My loved one Ardis was also on it. She had

encephalopathy

> so bad that she did not know where she was at times, and thought that the year

> was 1973! Lactulose converts certain toxins so that they can be eliminated in

> the bowel movement, since the liver cannot do this effectively any more. Was

> your husband experiencing altered personality in the hospital? If not, a high

> ammonia reading might have cause the doctors to prescribe this. It is more

> common to see a person become altered mentally, but occasionally they are

> normal, but have a high ammonia reading. Did the hospital staff explain this

to

> you?

>

> Many folks come on this group and say that their doctors keep them in the

> dark. Love, Bobby

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Sat, July 23, 2011 9:56:38 PM

> Subject: Recent diagnosis of cirrohosis of the liver

>

>

> Hi Everybody.

>

> I'm purely stumped by this disease. My husband was diagnosed as having

> cirrohosis of the liver on July 3 of this year. They did testing while he

> was in the ER, stating that yes he had it, along with acites, and of course

> they looked at his left leg and foot because it was swollen. They admitted

> him and kept him 2 days, with no other testing except for blood work. At

> the end of the 2nd day, his Dr poked her head into his hospital room doorway

> and said they were 'sending him home'. He came home with 2 prescriptions

> for antibiotics, with instructions to see his PCP, and to get a referral to

> a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> him to a Gastro who will see him on Monday at 2:45 pm.

>

> One of the things that has me stumped is that they've put him on 2

> tablespoons of lactulose 3 times a day, which makes him have to wear a

> diaper because he can't make it to the bathroom in time without soiling his

> clothes. The smell is horrendous and just makes me nauseated when he does

> have a bowel movement. Without the lactulose, he seems to not be able to go

> to the bathroom.

>

> Any words of encouragement would be greatly appreciated. I'm past the

> point of understanding much at this point.

>

> Thanks,

> Sandy

>

> --

> When people show you who they are the first time........Believe them!

>

>

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Posted
Posted

The referral to see a hepatologist is sometimes done by a physician acting on

his own, but there are plenty who will wait untill the patient is buried in the

cemetery before considering it. My loved on Ardis spent years going to the

public hospital, Denver health medical center. There were 12 doctors following

her case. One doctor wrote her a letter to give to social sescurity to prove her

disabled, and the letter said that she needed a liver transplant, but would need

medicare in order to qualify for one. This was because she had no money and no

job. That doctor did not refer her for a transplant, nor did any of the other 11

doctors!! The only way she ever got one was after she had won her social

security case, and was being seen at the university of Colorado hospital, (I

refused to take her to Denver health ever again) and they desparatly wanted to

discharge her after 14 days in-patient, and I told them that unless I had a

referral for a skilled nursing facility and an appointment on the calendar to

see the transplant doctor, my wife and I were going ton wheel her right up to

the emergency room intake counter and they knew that I knew that they would have

to readmit her because she was in liver failure and kidney failure, and in no

shape to be discharged without some kind of plan. The met all of our demands,

and she get her appointment with the hepatologist, who is now my hepatologist.

When a surgeon took my gallbladder out two months after Ardis died, my wife

immediately called our PCP and asked her for a referral to see the hepatologist.

That was November 17th 2006. I got to see him on December 19th, and have seen

him every 6 months since except when I am in the hospital for something, and

see him more often.

Your husband has the necessary complications to qualify for a transplant

evaluation...unless he is currently using alcohol or only recently quit

drinking, there would be no logical reason to wait. It is a big deal, I know,

and scary, some people choose to not even consider a transplant, but I just want

you to be aware that even some experienced doctors havent got a clue on how to

proceed when a patient is diagnosed with liver disease, and I am not the only

member of this group who has lost a loved one who might have benefited from an

early transplant, before they became too too sick...

The problem was that we werent helped out by doctors who acted like a

transplant wasnt even an option and we just didnt know any better, now we do.

Bobby

________________________________

To: livercirrhosissupport

Sent: Fri, July 29, 2011 2:17:30 PM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

Thanks for the info Bobby. We live in Houston, Tx & his dr is going to refer

him, but I'm not sure why he has not yet? The first thing the dr told us when

he walked into the room was that 'he'd killed his liver' drinking. He did

mention another referral to a liver specialist, but I'm guessing is just waiting

on the testing to come back. I had tried to talk hubby into letting me take him

downtown to one of the hospitals where they would have a liver specialist but he

got VERY bull headed and declined, stating he would just go to this Dr and wait

to see what they said.

>

> Hi, my name is Bobby. I was diagnosed with end stage liver disease after

seeing

>

> my best friend in the whole world Ardis die from it. Both if us got it from

> drinking, and I was able to stop after her death and have been sober going on

5

>

> years.

> Your post brings back the past to me, because it sounds a lot like how Ardis

> would go in to the hospital, and they would get her blood work to stabilize,

>and

>

> then send her home ... 13 time in one year!!

> When I was diagnosed, the very first thing I did was seek a transplant

> evaluation. I was told that my liver was well compensated, and there was no

>need

>

> for a transplant, but then later on things changed a bit. I was told that i

>have

>

> other serious complications, but that they would monitor the situation and if

>my

>

> complications became severe enough, I would become eligible for an expedited

> transplant. I am not sure why you were told to go see a gastro interologist.

>

>

> My advice is that a gastro interologist is a last resort, only if there are no

> large hospitals in your area, or no transplant centers nearby. Then it would

be

>

> understandable. A liver specialist is the right choice for the treatment of

> liver disease.

>

>

> Lactulose is for the treatment of hepatic encephalopathy. Many of us here take

> it on a regular basis. My loved one Ardis was also on it. She had

>encephalopathy

>

> so bad that she did not know where she was at times, and thought that the year

> was 1973! Lactulose converts certain toxins so that they can be eliminated in

> the bowel movement, since the liver cannot do this effectively any more. Was

> your husband experiencing altered personality in the hospital? If not, a high

> ammonia reading might have cause the doctors to prescribe this. It is more

> common to see a person become altered mentally, but occasionally they are

> normal, but have a high ammonia reading. Did the hospital staff explain this

to

>

> you?

>

> Many folks come on this group and say that their doctors keep them in the

> dark. Love, Bobby

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Sat, July 23, 2011 9:56:38 PM

> Subject: Recent diagnosis of cirrohosis of the liver

>

>

> Hi Everybody.

>

> I'm purely stumped by this disease. My husband was diagnosed as having

> cirrohosis of the liver on July 3 of this year. They did testing while he

> was in the ER, stating that yes he had it, along with acites, and of course

> they looked at his left leg and foot because it was swollen. They admitted

> him and kept him 2 days, with no other testing except for blood work. At

> the end of the 2nd day, his Dr poked her head into his hospital room doorway

> and said they were 'sending him home'. He came home with 2 prescriptions

> for antibiotics, with instructions to see his PCP, and to get a referral to

> a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> him to a Gastro who will see him on Monday at 2:45 pm.

>

> One of the things that has me stumped is that they've put him on 2

> tablespoons of lactulose 3 times a day, which makes him have to wear a

> diaper because he can't make it to the bathroom in time without soiling his

> clothes. The smell is horrendous and just makes me nauseated when he does

> have a bowel movement. Without the lactulose, he seems to not be able to go

> to the bathroom.

>

> Any words of encouragement would be greatly appreciated. I'm past the

> point of understanding much at this point.

>

> Thanks,

> Sandy

>

> --

> When people show you who they are the first time........Believe them!

>

>

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Posted
Posted

I'm reading your posts and remembering the first time had encephalopathy. 

It always seemed to happen in the morning, and I would wake him up and tell him

it was time for his medicine.  He would get real stubborn about doing anything

for me that had to be done, like taking his medicine.  I would be insistant,

keep shaking him, and he rolled over, smiled at me, and said in a sleepy voice,

" you're a pain in the ass. "   I was so hurt I sat there and cried, but then

remembered all I had read on this forum and called 911.  They would come and

take him to the hospital and a few days later his ammonia would return to

normal, only to go right back up again.  Once he was put on xifaxin along with

lactulose it worked like a charm.  No more confusion.  Jackie

To: livercirrhosissupport

Sent: Saturday, July 30, 2011 2:22 AM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

 

The toxins responsible for encephalopathy have a profound effect on sleep

patterns. In some ways it is like a head injury. There can be subtle memory loss

and nothing more, all the way up to and including a total loss of short term

memory, ability to sleep at night and inability to stay awake during the day,

agitation, anger issues, inappropriate behavior, false memories, and even

something called " confabulation " which is elaborate story telling or recall of

memories which are totally false and have no basis in the truth. I also have the

bad tasting food thing. I also get bad tastes in my mouth, so I keep lots of

little snacks on hand to nibble on. Bobby

________________________________

To: livercirrhosissupport

Sent: Fri, July 29, 2011 2:03:09 PM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

Thanks for all the info. Sorry I've not responded sooner, but life has been

'very fast paced' lately. I have been doing a lot of reading though, on

everything I can get my hands on about liver problems. Hubby finally had 6

liters removed from his abdomen last Tuesday and he said by the time the 3rd

liter was drained, he felt instant relief. This coming Wednesday he has an appt

to get a upper GI so they can look for the problems in the esophagus, and into

his stomach. They did more blood work this past Tuesday at the Gastro and said

they were checking for Cancer, HepC, and some other things that I can't remember

right now. What a month this has been! The Gastro did tell him to cut down to

twice a day at a lessor amt on the lactulose, and that has helped tremendously.

His main complaint at this time is not tasting food or it just tastes bad to

him, and his inability to sleep. Apparently he's just napping, which I'd hope

the fluid relief would have helped with. Not so.

> > Hi Everybody.

> >

> > I'm purely stumped by this disease. My husband was diagnosed as having

> > cirrohosis of the liver on July 3 of this year. They did testing while he

> > was in the ER, stating that yes he had it, along with acites, and of course

> > they looked at his left leg and foot because it was swollen. They admitted

> > him and kept him 2 days, with no other testing except for blood work. At

> > the end of the 2nd day, his Dr poked her head into his hospital room doorway

> > and said they were 'sending him home'. He came home with 2 prescriptions

> > for antibiotics, with instructions to see his PCP, and to get a referral to

> > a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> > him to a Gastro who will see him on Monday at 2:45 pm.

> >

> > One of the things that has me stumped is that they've put him on 2

> > tablespoons of lactulose 3 times a day, which makes him have to wear a

> > diaper because he can't make it to the bathroom in time without soiling his

> > clothes. The smell is horrendous and just makes me nauseated when he does

> > have a bowel movement. Without the lactulose, he seems to not be able to go

> > to the bathroom.

> >

> > Any words of encouragement would be greatly appreciated. I'm past the

> > point of understanding much at this point.

> >

> > Thanks,

> > Sandy

> >

> > --

> > When people show you who they are the first time........Believe them!

> >

> >

> >

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Posted
Posted

Bobby, what you say is so true.  When my husband was first diagnosed with

advanced cirrhosis, the dr told me that the liver transplant list is quite

long.  My reply was " It'll be even longer if we wait.  We need to get him on

that list NOW. "   The rest is history.  Jackie

To: livercirrhosissupport

Sent: Saturday, July 30, 2011 4:44 AM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

 

The referral to see a hepatologist is sometimes done by a physician acting on

his own, but there are plenty who will wait untill the patient is buried in the

cemetery before considering it. My loved on Ardis spent years going to the

public hospital, Denver health medical center. There were 12 doctors following

her case. One doctor wrote her a letter to give to social sescurity to prove her

disabled, and the letter said that she needed a liver transplant, but would need

medicare in order to qualify for one. This was because she had no money and no

job. That doctor did not refer her for a transplant, nor did any of the other 11

doctors!! The only way she ever got one was after she had won her social

security case, and was being seen at the university of Colorado hospital, (I

refused to take her to Denver health ever again) and they desparatly wanted to

discharge her after 14 days in-patient, and I told them that unless I had a

referral for a skilled nursing facility and an appointment on the calendar to

see the transplant doctor, my wife and I were going ton wheel her right up to

the emergency room intake counter and they knew that I knew that they would have

to readmit her because she was in liver failure and kidney failure, and in no

shape to be discharged without some kind of plan. The met all of our demands,

and she get her appointment with the hepatologist, who is now my hepatologist.

When a surgeon took my gallbladder out two months after Ardis died, my wife

immediately called our PCP and asked her for a referral to see the hepatologist.

That was November 17th 2006. I got to see him on December 19th, and have seen

him every 6 months since except when I am in the hospital for something, and

see him more often.

Your husband has the necessary complications to qualify for a transplant

evaluation...unless he is currently using alcohol or only recently quit

drinking, there would be no logical reason to wait. It is a big deal, I know,

and scary, some people choose to not even consider a transplant, but I just want

you to be aware that even some experienced doctors havent got a clue on how to

proceed when a patient is diagnosed with liver disease, and I am not the only

member of this group who has lost a loved one who might have benefited from an

early transplant, before they became too too sick...

The problem was that we werent helped out by doctors who acted like a

transplant wasnt even an option and we just didnt know any better, now we do.

Bobby

________________________________

To: livercirrhosissupport

Sent: Fri, July 29, 2011 2:17:30 PM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

Thanks for the info Bobby. We live in Houston, Tx & his dr is going to refer

him, but I'm not sure why he has not yet? The first thing the dr told us when

he walked into the room was that 'he'd killed his liver' drinking. He did

mention another referral to a liver specialist, but I'm guessing is just waiting

on the testing to come back. I had tried to talk hubby into letting me take him

downtown to one of the hospitals where they would have a liver specialist but he

got VERY bull headed and declined, stating he would just go to this Dr and wait

to see what they said.

>

> Hi, my name is Bobby. I was diagnosed with end stage liver disease after

seeing

>

> my best friend in the whole world Ardis die from it. Both if us got it from

> drinking, and I was able to stop after her death and have been sober going on

5

>

> years.

> Your post brings back the past to me, because it sounds a lot like how Ardis

> would go in to the hospital, and they would get her blood work to stabilize,

>and

>

> then send her home ... 13 time in one year!!

> When I was diagnosed, the very first thing I did was seek a transplant

> evaluation. I was told that my liver was well compensated, and there was no

>need

>

> for a transplant, but then later on things changed a bit. I was told that i

>have

>

> other serious complications, but that they would monitor the situation and if

>my

>

> complications became severe enough, I would become eligible for an expedited

> transplant. I am not sure why you were told to go see a gastro interologist.

>

>

> My advice is that a gastro interologist is a last resort, only if there are no

> large hospitals in your area, or no transplant centers nearby. Then it would

be

>

> understandable. A liver specialist is the right choice for the treatment of

> liver disease.

>

>

> Lactulose is for the treatment of hepatic encephalopathy. Many of us here take

> it on a regular basis. My loved one Ardis was also on it. She had

>encephalopathy

>

> so bad that she did not know where she was at times, and thought that the year

> was 1973! Lactulose converts certain toxins so that they can be eliminated in

> the bowel movement, since the liver cannot do this effectively any more. Was

> your husband experiencing altered personality in the hospital? If not, a high

> ammonia reading might have cause the doctors to prescribe this. It is more

> common to see a person become altered mentally, but occasionally they are

> normal, but have a high ammonia reading. Did the hospital staff explain this

to

>

> you?

>

> Many folks come on this group and say that their doctors keep them in the

> dark. Love, Bobby

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Sat, July 23, 2011 9:56:38 PM

> Subject: Recent diagnosis of cirrohosis of the liver

>

>

> Hi Everybody.

>

> I'm purely stumped by this disease. My husband was diagnosed as having

> cirrohosis of the liver on July 3 of this year. They did testing while he

> was in the ER, stating that yes he had it, along with acites, and of course

> they looked at his left leg and foot because it was swollen. They admitted

> him and kept him 2 days, with no other testing except for blood work. At

> the end of the 2nd day, his Dr poked her head into his hospital room doorway

> and said they were 'sending him home'. He came home with 2 prescriptions

> for antibiotics, with instructions to see his PCP, and to get a referral to

> a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> him to a Gastro who will see him on Monday at 2:45 pm.

>

> One of the things that has me stumped is that they've put him on 2

> tablespoons of lactulose 3 times a day, which makes him have to wear a

> diaper because he can't make it to the bathroom in time without soiling his

> clothes. The smell is horrendous and just makes me nauseated when he does

> have a bowel movement. Without the lactulose, he seems to not be able to go

> to the bathroom.

>

> Any words of encouragement would be greatly appreciated. I'm past the

> point of understanding much at this point.

>

> Thanks,

> Sandy

>

> --

> When people show you who they are the first time........Believe them!

>

>

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Posted
Posted

I remember! You took the bull by the horns, and said " where is the beginning of

the line? " I remember telling you that I am always 21st in line for a 20 ham

giveaway...It's one of our anecdotes around here.

I don't know why it is, but so many people come to this group having been

dropped right through the cracks. I met late one night a few years

ago when she IM'd me in at 3 in the morning, in tears telling me that her

Physicians assistant and Gastro interologist were telling her that she had to be

sober and pass certain tests in order to obtain a referral!?!?!. Now I know that

the decision to evaluate is in the hands of the transplant team, and she wasnt

even at the Cleveland clinic yet. This was coming from someone in private

practice. I assure her that these whackos would have exactly as much say in her

getting on the list as she let them, and to bypass them like a car on the free

way. Make a signal, move to the left lane, and HIT THAT GAS! She did so the very

next week , and called me on the phone, and was so excited, she could barely

keep it in, she was going for a transplant evaluation, and doctor quackery and

his trusty ass istant were no where to be found. She died having been on the

list for around a year if my memory serves me. At last she was trying to live.

Now if I could only muster the courage to follow in her foot steps. Love, Bobby

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Sat, July 30, 2011 3:27:18 AM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

Bobby, what you say is so true. When my husband was first diagnosed with

advanced cirrhosis, the dr told me that the liver transplant list is quite

long. My reply was " It'll be even longer if we wait. We need to get him on

that list NOW. " The rest is history. Jackie

To: livercirrhosissupport

Sent: Saturday, July 30, 2011 4:44 AM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

The referral to see a hepatologist is sometimes done by a physician acting on

his own, but there are plenty who will wait untill the patient is buried in the

cemetery before considering it. My loved on Ardis spent years going to the

public hospital, Denver health medical center. There were 12 doctors following

her case. One doctor wrote her a letter to give to social sescurity to prove her

disabled, and the letter said that she needed a liver transplant, but would need

medicare in order to qualify for one. This was because she had no money and no

job. That doctor did not refer her for a transplant, nor did any of the other 11

doctors!! The only way she ever got one was after she had won her social

security case, and was being seen at the university of Colorado hospital, (I

refused to take her to Denver health ever again) and they desparatly wanted to

discharge her after 14 days in-patient, and I told them that unless I had a

referral for a skilled nursing facility and an appointment on the calendar to

see the transplant doctor, my wife and I were going ton wheel her right up to

the emergency room intake counter and they knew that I knew that they would have

to readmit her because she was in liver failure and kidney failure, and in no

shape to be discharged without some kind of plan. The met all of our demands,

and she get her appointment with the hepatologist, who is now my hepatologist.

When a surgeon took my gallbladder out two months after Ardis died, my wife

immediately called our PCP and asked her for a referral to see the hepatologist.

That was November 17th 2006. I got to see him on December 19th, and have seen

him every 6 months since except when I am in the hospital for something, and

see him more often.

Your husband has the necessary complications to qualify for a transplant

evaluation...unless he is currently using alcohol or only recently quit

drinking, there would be no logical reason to wait. It is a big deal, I know,

and scary, some people choose to not even consider a transplant, but I just want

you to be aware that even some experienced doctors havent got a clue on how to

proceed when a patient is diagnosed with liver disease, and I am not the only

member of this group who has lost a loved one who might have benefited from an

early transplant, before they became too too sick...

The problem was that we werent helped out by doctors who acted like a

transplant wasnt even an option and we just didnt know any better, now we do.

Bobby

________________________________

To: livercirrhosissupport

Sent: Fri, July 29, 2011 2:17:30 PM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

Thanks for the info Bobby. We live in Houston, Tx & his dr is going to refer

him, but I'm not sure why he has not yet? The first thing the dr told us when

he walked into the room was that 'he'd killed his liver' drinking. He did

mention another referral to a liver specialist, but I'm guessing is just waiting

on the testing to come back. I had tried to talk hubby into letting me take him

downtown to one of the hospitals where they would have a liver specialist but he

got VERY bull headed and declined, stating he would just go to this Dr and wait

to see what they said.

>

> Hi, my name is Bobby. I was diagnosed with end stage liver disease after

seeing

>

>

> my best friend in the whole world Ardis die from it. Both if us got it from

> drinking, and I was able to stop after her death and have been sober going on

5

>

>

> years.

> Your post brings back the past to me, because it sounds a lot like how Ardis

> would go in to the hospital, and they would get her blood work to stabilize,

>and

>

> then send her home ... 13 time in one year!!

> When I was diagnosed, the very first thing I did was seek a transplant

> evaluation. I was told that my liver was well compensated, and there was no

>need

>

> for a transplant, but then later on things changed a bit. I was told that i

>have

>

> other serious complications, but that they would monitor the situation and if

>my

>

> complications became severe enough, I would become eligible for an expedited

> transplant. I am not sure why you were told to go see a gastro interologist.

>

>

> My advice is that a gastro interologist is a last resort, only if there are no

> large hospitals in your area, or no transplant centers nearby. Then it would

be

>

>

> understandable. A liver specialist is the right choice for the treatment of

> liver disease.

>

>

> Lactulose is for the treatment of hepatic encephalopathy. Many of us here take

> it on a regular basis. My loved one Ardis was also on it. She had

>encephalopathy

>

> so bad that she did not know where she was at times, and thought that the year

> was 1973! Lactulose converts certain toxins so that they can be eliminated in

> the bowel movement, since the liver cannot do this effectively any more. Was

> your husband experiencing altered personality in the hospital? If not, a high

> ammonia reading might have cause the doctors to prescribe this. It is more

> common to see a person become altered mentally, but occasionally they are

> normal, but have a high ammonia reading. Did the hospital staff explain this

to

>

>

> you?

>

> Many folks come on this group and say that their doctors keep them in the

> dark. Love, Bobby

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Sat, July 23, 2011 9:56:38 PM

> Subject: Recent diagnosis of cirrohosis of the liver

>

>

> Hi Everybody.

>

> I'm purely stumped by this disease. My husband was diagnosed as having

> cirrohosis of the liver on July 3 of this year. They did testing while he

> was in the ER, stating that yes he had it, along with acites, and of course

> they looked at his left leg and foot because it was swollen. They admitted

> him and kept him 2 days, with no other testing except for blood work. At

> the end of the 2nd day, his Dr poked her head into his hospital room doorway

> and said they were 'sending him home'. He came home with 2 prescriptions

> for antibiotics, with instructions to see his PCP, and to get a referral to

> a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> him to a Gastro who will see him on Monday at 2:45 pm.

>

> One of the things that has me stumped is that they've put him on 2

> tablespoons of lactulose 3 times a day, which makes him have to wear a

> diaper because he can't make it to the bathroom in time without soiling his

> clothes. The smell is horrendous and just makes me nauseated when he does

> have a bowel movement. Without the lactulose, he seems to not be able to go

> to the bathroom.

>

> Any words of encouragement would be greatly appreciated. I'm past the

> point of understanding much at this point.

>

> Thanks,

> Sandy

>

> --

> When people show you who they are the first time........Believe them!

>

>

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Posted
Posted

Thank you for that. My dad passed in may of liver cancer and liver

disease....and my mom has Nash. Have a fatty liver confirmed a week ago and

scared. My dad missed his 60th b'day and it kills me to think I would be in the

same shape. I too live in jersey village within Houston.

Recent diagnosis of cirrohosis of the liver

>

>

> Hi Everybody.

>

> I'm purely stumped by this disease. My husband was diagnosed as having

> cirrohosis of the liver on July 3 of this year. They did testing while he

> was in the ER, stating that yes he had it, along with acites, and of course

> they looked at his left leg and foot because it was swollen. They admitted

> him and kept him 2 days, with no other testing except for blood work. At

> the end of the 2nd day, his Dr poked her head into his hospital room doorway

> and said they were 'sending him home'. He came home with 2 prescriptions

> for antibiotics, with instructions to see his PCP, and to get a referral to

> a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> him to a Gastro who will see him on Monday at 2:45 pm.

>

> One of the things that has me stumped is that they've put him on 2

> tablespoons of lactulose 3 times a day, which makes him have to wear a

> diaper because he can't make it to the bathroom in time without soiling his

> clothes. The smell is horrendous and just makes me nauseated when he does

> have a bowel movement. Without the lactulose, he seems to not be able to go

> to the bathroom.

>

> Any words of encouragement would be greatly appreciated. I'm past the

> point of understanding much at this point.

>

> Thanks,

> Sandy

>

> --

> When people show you who they are the first time........Believe them!

>

>

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Share on other sites
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Posted
Posted

Bobby,I really miss . She got pneumonia and her body  & immune system

couldn't fight it. I was so shocked when they let me know she had passed. She

had a wicked sense of humor and i loved her!! She died way, way too soon!  

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

To: livercirrhosissupport

Sent: Saturday, July 30, 2011 11:16 AM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

 

I remember! You took the bull by the horns, and said " where is the beginning of

the line? " I remember telling you that I am always 21st in line for a 20 ham

giveaway...It's one of our anecdotes around here.

I don't know why it is, but so many people come to this group having been

dropped right through the cracks. I met late one night a few years

ago when she IM'd me in at 3 in the morning, in tears telling me that her

Physicians assistant and Gastro interologist were telling her that she had to be

sober and pass certain tests in order to obtain a referral!?!?!. Now I know that

the decision to evaluate is in the hands of the transplant team, and she wasnt

even at the Cleveland clinic yet. This was coming from someone in private

practice. I assure her that these whackos would have exactly as much say in her

getting on the list as she let them, and to bypass them like a car on the free

way. Make a signal, move to the left lane, and HIT THAT GAS! She did so the very

next week , and called me on the phone, and was so excited, she could barely

keep it in, she was going for a transplant evaluation, and doctor quackery and

his trusty ass istant were no where to be found. She died having been on the

list for around a year if my memory serves me. At last she was trying to live.

Now if I could only muster the courage to follow in her foot steps. Love, Bobby

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Sat, July 30, 2011 3:27:18 AM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

Bobby, what you say is so true. When my husband was first diagnosed with

advanced cirrhosis, the dr told me that the liver transplant list is quite

long. My reply was " It'll be even longer if we wait. We need to get him on

that list NOW. " The rest is history. Jackie

To: livercirrhosissupport

Sent: Saturday, July 30, 2011 4:44 AM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

The referral to see a hepatologist is sometimes done by a physician acting on

his own, but there are plenty who will wait untill the patient is buried in the

cemetery before considering it. My loved on Ardis spent years going to the

public hospital, Denver health medical center. There were 12 doctors following

her case. One doctor wrote her a letter to give to social sescurity to prove her

disabled, and the letter said that she needed a liver transplant, but would need

medicare in order to qualify for one. This was because she had no money and no

job. That doctor did not refer her for a transplant, nor did any of the other 11

doctors!! The only way she ever got one was after she had won her social

security case, and was being seen at the university of Colorado hospital, (I

refused to take her to Denver health ever again) and they desparatly wanted to

discharge her after 14 days in-patient, and I told them that unless I had a

referral for a skilled nursing facility and an appointment on the calendar to

see the transplant doctor, my wife and I were going ton wheel her right up to

the emergency room intake counter and they knew that I knew that they would have

to readmit her because she was in liver failure and kidney failure, and in no

shape to be discharged without some kind of plan. The met all of our demands,

and she get her appointment with the hepatologist, who is now my hepatologist.

When a surgeon took my gallbladder out two months after Ardis died, my wife

immediately called our PCP and asked her for a referral to see the hepatologist.

That was November 17th 2006. I got to see him on December 19th, and have seen

him every 6 months since except when I am in the hospital for something, and

see him more often.

Your husband has the necessary complications to qualify for a transplant

evaluation...unless he is currently using alcohol or only recently quit

drinking, there would be no logical reason to wait. It is a big deal, I know,

and scary, some people choose to not even consider a transplant, but I just want

you to be aware that even some experienced doctors havent got a clue on how to

proceed when a patient is diagnosed with liver disease, and I am not the only

member of this group who has lost a loved one who might have benefited from an

early transplant, before they became too too sick...

The problem was that we werent helped out by doctors who acted like a

transplant wasnt even an option and we just didnt know any better, now we do.

Bobby

________________________________

To: livercirrhosissupport

Sent: Fri, July 29, 2011 2:17:30 PM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

Thanks for the info Bobby. We live in Houston, Tx & his dr is going to refer

him, but I'm not sure why he has not yet? The first thing the dr told us when

he walked into the room was that 'he'd killed his liver' drinking. He did

mention another referral to a liver specialist, but I'm guessing is just waiting

on the testing to come back. I had tried to talk hubby into letting me take him

downtown to one of the hospitals where they would have a liver specialist but he

got VERY bull headed and declined, stating he would just go to this Dr and wait

to see what they said.

>

> Hi, my name is Bobby. I was diagnosed with end stage liver disease after

seeing

>

>

> my best friend in the whole world Ardis die from it. Both if us got it from

> drinking, and I was able to stop after her death and have been sober going on

5

>

>

> years.

> Your post brings back the past to me, because it sounds a lot like how Ardis

> would go in to the hospital, and they would get her blood work to stabilize,

>and

>

> then send her home ... 13 time in one year!!

> When I was diagnosed, the very first thing I did was seek a transplant

> evaluation. I was told that my liver was well compensated, and there was no

>need

>

> for a transplant, but then later on things changed a bit. I was told that i

>have

>

> other serious complications, but that they would monitor the situation and if

>my

>

> complications became severe enough, I would become eligible for an expedited

> transplant. I am not sure why you were told to go see a gastro interologist.

>

>

> My advice is that a gastro interologist is a last resort, only if there are no

> large hospitals in your area, or no transplant centers nearby. Then it would

be

>

>

> understandable. A liver specialist is the right choice for the treatment of

> liver disease.

>

>

> Lactulose is for the treatment of hepatic encephalopathy. Many of us here take

> it on a regular basis. My loved one Ardis was also on it. She had

>encephalopathy

>

> so bad that she did not know where she was at times, and thought that the year

> was 1973! Lactulose converts certain toxins so that they can be eliminated in

> the bowel movement, since the liver cannot do this effectively any more. Was

> your husband experiencing altered personality in the hospital? If not, a high

> ammonia reading might have cause the doctors to prescribe this. It is more

> common to see a person become altered mentally, but occasionally they are

> normal, but have a high ammonia reading. Did the hospital staff explain this

to

>

>

> you?

>

> Many folks come on this group and say that their doctors keep them in the

> dark. Love, Bobby

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Sat, July 23, 2011 9:56:38 PM

> Subject: Recent diagnosis of cirrohosis of the liver

>

>

> Hi Everybody.

>

> I'm purely stumped by this disease. My husband was diagnosed as having

> cirrohosis of the liver on July 3 of this year. They did testing while he

> was in the ER, stating that yes he had it, along with acites, and of course

> they looked at his left leg and foot because it was swollen. They admitted

> him and kept him 2 days, with no other testing except for blood work. At

> the end of the 2nd day, his Dr poked her head into his hospital room doorway

> and said they were 'sending him home'. He came home with 2 prescriptions

> for antibiotics, with instructions to see his PCP, and to get a referral to

> a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> him to a Gastro who will see him on Monday at 2:45 pm.

>

> One of the things that has me stumped is that they've put him on 2

> tablespoons of lactulose 3 times a day, which makes him have to wear a

> diaper because he can't make it to the bathroom in time without soiling his

> clothes. The smell is horrendous and just makes me nauseated when he does

> have a bowel movement. Without the lactulose, he seems to not be able to go

> to the bathroom.

>

> Any words of encouragement would be greatly appreciated. I'm past the

> point of understanding much at this point.

>

> Thanks,

> Sandy

>

> --

> When people show you who they are the first time........Believe them!

>

>

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Posted
Posted

,

I am sorry you are frightened. But, with fatty liver, you can do something about

it. I also have fatty liver and have had it for over 30 yrs. Cut down on the bad

fats in your diet and if you are overweight, try to lose some. I am still heavy

and cutting out fats have really helped. Also read about what foods and meds

affect the liver and go from there. Thin k positive. You can make the

difference.

Hugs

Ann

> >

> > Hi, my name is Bobby. I was diagnosed with end stage liver disease after

seeing

> > my best friend in the whole world Ardis die from it. Both if us got it from

> > drinking, and I was able to stop after her death and have been sober going

on 5

> > years.

> > Your post brings back the past to me, because it sounds a lot like how Ardis

> > would go in to the hospital, and they would get her blood work to stabilize,

and

> > then send her home ... 13 time in one year!!

> > When I was diagnosed, the very first thing I did was seek a transplant

> > evaluation. I was told that my liver was well compensated, and there was no

need

> > for a transplant, but then later on things changed a bit. I was told that i

have

> > other serious complications, but that they would monitor the situation and

if my

> > complications became severe enough, I would become eligible for an expedited

> > transplant. I am not sure why you were told to go see a gastro interologist.

> >

> >

> > My advice is that a gastro interologist is a last resort, only if there are

no

> > large hospitals in your area, or no transplant centers nearby. Then it would

be

> > understandable. A liver specialist is the right choice for the treatment of

> > liver disease.

> >

> >

> > Lactulose is for the treatment of hepatic encephalopathy. Many of us here

take

> > it on a regular basis. My loved one Ardis was also on it. She had

encephalopathy

> > so bad that she did not know where she was at times, and thought that the

year

> > was 1973! Lactulose converts certain toxins so that they can be eliminated

in

> > the bowel movement, since the liver cannot do this effectively any more. Was

> > your husband experiencing altered personality in the hospital? If not, a

high

> > ammonia reading might have cause the doctors to prescribe this. It is more

> > common to see a person become altered mentally, but occasionally they are

> > normal, but have a high ammonia reading. Did the hospital staff explain this

to

> > you?

> >

> > Many folks come on this group and say that their doctors keep them in the

> > dark. Love, Bobby

> >

> >

> >

> >

> > ________________________________

> > From: birdlady Tx <birdlady.tx@>

> > To: livercirrhosissupport

> > Sent: Sat, July 23, 2011 9:56:38 PM

> > Subject: Recent diagnosis of cirrohosis of the

liver

> >

> >

> > Hi Everybody.

> >

> > I'm purely stumped by this disease. My husband was diagnosed as having

> > cirrohosis of the liver on July 3 of this year. They did testing while he

> > was in the ER, stating that yes he had it, along with acites, and of course

> > they looked at his left leg and foot because it was swollen. They admitted

> > him and kept him 2 days, with no other testing except for blood work. At

> > the end of the 2nd day, his Dr poked her head into his hospital room doorway

> > and said they were 'sending him home'. He came home with 2 prescriptions

> > for antibiotics, with instructions to see his PCP, and to get a referral to

> > a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> > him to a Gastro who will see him on Monday at 2:45 pm.

> >

> > One of the things that has me stumped is that they've put him on 2

> > tablespoons of lactulose 3 times a day, which makes him have to wear a

> > diaper because he can't make it to the bathroom in time without soiling his

> > clothes. The smell is horrendous and just makes me nauseated when he does

> > have a bowel movement. Without the lactulose, he seems to not be able to go

> > to the bathroom.

> >

> > Any words of encouragement would be greatly appreciated. I'm past the

> > point of understanding much at this point.

> >

> > Thanks,

> > Sandy

> >

> > --

> > When people show you who they are the first time........Believe them!

> >

> >

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Posted
Posted

My shrink says that talking about things lessens the pain. related the

following to me: She was lying in a hospital, bleeding from everywhere she

could. She asked the nurse " am I going to die " ? and the nurse told her " I'm so

sorry, but you are going to die, probably very very soon... have you thought

about getting a liver transplant? " . She said a lightbulb went off in her head.

She hadnt even ever considered that option. She had done time in prison for

bank robbery, (can you even believe that?) and had tried to turn her life

around. She didnt think anyone would give her a chance given her past. She didnt

die that night, and soon found this group. I talked to her about AA and

recovery, and she went through a treatment program to comply with the doctors

wishes. That doctor had convinced her that she couldnt even get a referral until

she had completed a program to his satisfaction. She was in a lot of pain from

her liver ,yet choose the recovery program, and the pee tested, so she couldnt

get any thing for her pain... not even one vicodin. She really put her nose to

the grindstone and started living the straight life, and I thought she was well

on her way to getting that transplant. She ended up listed for a liver translant

at the Cleveland clinic. It's supposed to be one of the best hospitals in the

country. My face book page still says " poked you...(for you non

face book users, that is a type of greeting) Then I remember she is gone, and I

never took the time to poke her back. Love, Bobby

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Sat, July 30, 2011 7:28:13 PM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

Bobby,I really miss . She got pneumonia and her body & immune system

couldn't fight it. I was so shocked when they let me know she had passed. She

had a wicked sense of humor and i loved her!! She died way, way too soon!

Love,Jill

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

To: livercirrhosissupport

Sent: Saturday, July 30, 2011 11:16 AM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

I remember! You took the bull by the horns, and said " where is the beginning of

the line? " I remember telling you that I am always 21st in line for a 20 ham

giveaway...It's one of our anecdotes around here.

I don't know why it is, but so many people come to this group having been

dropped right through the cracks. I met late one night a few years

ago when she IM'd me in at 3 in the morning, in tears telling me that her

Physicians assistant and Gastro interologist were telling her that she had to be

sober and pass certain tests in order to obtain a referral!?!?!. Now I know that

the decision to evaluate is in the hands of the transplant team, and she wasnt

even at the Cleveland clinic yet. This was coming from someone in private

practice. I assure her that these whackos would have exactly as much say in her

getting on the list as she let them, and to bypass them like a car on the free

way. Make a signal, move to the left lane, and HIT THAT GAS! She did so the very

next week , and called me on the phone, and was so excited, she could barely

keep it in, she was going for a transplant evaluation, and doctor quackery and

his trusty ass istant were no where to be found. She died having been on the

list for around a year if my memory serves me. At last she was trying to live.

Now if I could only muster the courage to follow in her foot steps. Love, Bobby

________________________________

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Sat, July 30, 2011 3:27:18 AM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

Bobby, what you say is so true. When my husband was first diagnosed with

advanced cirrhosis, the dr told me that the liver transplant list is quite

long. My reply was " It'll be even longer if we wait. We need to get him on

that list NOW. " The rest is history. Jackie

To: livercirrhosissupport

Sent: Saturday, July 30, 2011 4:44 AM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

The referral to see a hepatologist is sometimes done by a physician acting on

his own, but there are plenty who will wait untill the patient is buried in the

cemetery before considering it. My loved on Ardis spent years going to the

public hospital, Denver health medical center. There were 12 doctors following

her case. One doctor wrote her a letter to give to social sescurity to prove her

disabled, and the letter said that she needed a liver transplant, but would need

medicare in order to qualify for one. This was because she had no money and no

job. That doctor did not refer her for a transplant, nor did any of the other 11

doctors!! The only way she ever got one was after she had won her social

security case, and was being seen at the university of Colorado hospital, (I

refused to take her to Denver health ever again) and they desparatly wanted to

discharge her after 14 days in-patient, and I told them that unless I had a

referral for a skilled nursing facility and an appointment on the calendar to

see the transplant doctor, my wife and I were going ton wheel her right up to

the emergency room intake counter and they knew that I knew that they would have

to readmit her because she was in liver failure and kidney failure, and in no

shape to be discharged without some kind of plan. The met all of our demands,

and she get her appointment with the hepatologist, who is now my hepatologist.

When a surgeon took my gallbladder out two months after Ardis died, my wife

immediately called our PCP and asked her for a referral to see the hepatologist.

That was November 17th 2006. I got to see him on December 19th, and have seen

him every 6 months since except when I am in the hospital for something, and

see him more often.

Your husband has the necessary complications to qualify for a transplant

evaluation...unless he is currently using alcohol or only recently quit

drinking, there would be no logical reason to wait. It is a big deal, I know,

and scary, some people choose to not even consider a transplant, but I just want

you to be aware that even some experienced doctors havent got a clue on how to

proceed when a patient is diagnosed with liver disease, and I am not the only

member of this group who has lost a loved one who might have benefited from an

early transplant, before they became too too sick...

The problem was that we werent helped out by doctors who acted like a

transplant wasnt even an option and we just didnt know any better, now we do.

Bobby

________________________________

To: livercirrhosissupport

Sent: Fri, July 29, 2011 2:17:30 PM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

Thanks for the info Bobby. We live in Houston, Tx & his dr is going to refer

him, but I'm not sure why he has not yet? The first thing the dr told us when

he walked into the room was that 'he'd killed his liver' drinking. He did

mention another referral to a liver specialist, but I'm guessing is just waiting

on the testing to come back. I had tried to talk hubby into letting me take him

downtown to one of the hospitals where they would have a liver specialist but he

got VERY bull headed and declined, stating he would just go to this Dr and wait

to see what they said.

>

> Hi, my name is Bobby. I was diagnosed with end stage liver disease after

seeing

>

>

>

> my best friend in the whole world Ardis die from it. Both if us got it from

> drinking, and I was able to stop after her death and have been sober going on

5

>

>

>

> years.

> Your post brings back the past to me, because it sounds a lot like how Ardis

> would go in to the hospital, and they would get her blood work to stabilize,

>and

>

> then send her home ... 13 time in one year!!

> When I was diagnosed, the very first thing I did was seek a transplant

> evaluation. I was told that my liver was well compensated, and there was no

>need

>

> for a transplant, but then later on things changed a bit. I was told that i

>have

>

> other serious complications, but that they would monitor the situation and if

>my

>

> complications became severe enough, I would become eligible for an expedited

> transplant. I am not sure why you were told to go see a gastro interologist.

>

>

> My advice is that a gastro interologist is a last resort, only if there are no

> large hospitals in your area, or no transplant centers nearby. Then it would

be

>

>

>

> understandable. A liver specialist is the right choice for the treatment of

> liver disease.

>

>

> Lactulose is for the treatment of hepatic encephalopathy. Many of us here take

> it on a regular basis. My loved one Ardis was also on it. She had

>encephalopathy

>

> so bad that she did not know where she was at times, and thought that the year

> was 1973! Lactulose converts certain toxins so that they can be eliminated in

> the bowel movement, since the liver cannot do this effectively any more. Was

> your husband experiencing altered personality in the hospital? If not, a high

> ammonia reading might have cause the doctors to prescribe this. It is more

> common to see a person become altered mentally, but occasionally they are

> normal, but have a high ammonia reading. Did the hospital staff explain this

to

>

>

>

> you?

>

> Many folks come on this group and say that their doctors keep them in the

> dark. Love, Bobby

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Sat, July 23, 2011 9:56:38 PM

> Subject: Recent diagnosis of cirrohosis of the liver

>

>

> Hi Everybody.

>

> I'm purely stumped by this disease. My husband was diagnosed as having

> cirrohosis of the liver on July 3 of this year. They did testing while he

> was in the ER, stating that yes he had it, along with acites, and of course

> they looked at his left leg and foot because it was swollen. They admitted

> him and kept him 2 days, with no other testing except for blood work. At

> the end of the 2nd day, his Dr poked her head into his hospital room doorway

> and said they were 'sending him home'. He came home with 2 prescriptions

> for antibiotics, with instructions to see his PCP, and to get a referral to

> a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> him to a Gastro who will see him on Monday at 2:45 pm.

>

> One of the things that has me stumped is that they've put him on 2

> tablespoons of lactulose 3 times a day, which makes him have to wear a

> diaper because he can't make it to the bathroom in time without soiling his

> clothes. The smell is horrendous and just makes me nauseated when he does

> have a bowel movement. Without the lactulose, he seems to not be able to go

> to the bathroom.

>

> Any words of encouragement would be greatly appreciated. I'm past the

> point of understanding much at this point.

>

> Thanks,

> Sandy

>

> --

> When people show you who they are the first time........Believe them!

>

>

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Share on other sites
Guest guest

Guest guest

Posted
Posted

I was so sad when I heard she had passed. I hate this horrible

disease and what it does. did turn her life around. Many

people never do. So kudos to ! I wish I had gotten to know her

better.

Roni

> My shrink says that talking about things lessens the pain.

> related the

> following to me: She was lying in a hospital, bleeding from

> everywhere she

> could. She asked the nurse " am I going to die " ? and the nurse told

> her " I'm so

> sorry, but you are going to die, probably very very soon... have you

> thought

> about getting a liver transplant? " . She said a lightbulb went off in

> her head.

> She hadnt even ever considered that option. She had done time in

> prison for

> bank robbery, (can you even believe that?) and had tried to turn her

> life

> around. She didnt think anyone would give her a chance given her

> past. She didnt

> die that night, and soon found this group. I talked to her about AA

> and

> recovery, and she went through a treatment program to comply with

> the doctors

> wishes. That doctor had convinced her that she couldnt even get a

> referral until

> she had completed a program to his satisfaction. She was in a lot of

> pain from

> her liver ,yet choose the recovery program, and the pee tested, so

> she couldnt

> get any thing for her pain... not even one vicodin. She really put

> her nose to

> the grindstone and started living the straight life, and I thought

> she was well

> on her way to getting that transplant. She ended up listed for a

> liver translant

> at the Cleveland clinic. It's supposed to be one of the best

> hospitals in the

> country. My face book page still says " poked you...(for

> you non

> face book users, that is a type of greeting) Then I remember she is

> gone, and I

> never took the time to poke her back. Love, Bobby

>

> ________________________________

>

> To: " livercirrhosissupport "

> <livercirrhosissupport >

> Sent: Sat, July 30, 2011 7:28:13 PM

> Subject: Re: Recent diagnosis of

> cirrohosis of the

> liver

>

> Bobby,I really miss . She got pneumonia and her body & immune

> system

> couldn't fight it. I was so shocked when they let me know she had

> passed. She

> had a wicked sense of humor and i loved her!! She died way, way too

> soon!

>

> Love,Jill

>

> We don't remember days, we remember moments.

> Life is not measured by the breaths we take,but by the moments that

> take our

> breath away.

>

>

> To: livercirrhosissupport

> Sent: Saturday, July 30, 2011 11:16 AM

> Subject: Re: Recent diagnosis of

> cirrohosis of the

> liver

>

> I remember! You took the bull by the horns, and said " where is the

> beginning of

>

> the line? " I remember telling you that I am always 21st in line for

> a 20 ham

> giveaway...It's one of our anecdotes around here.

>

> I don't know why it is, but so many people come to this group having

> been

> dropped right through the cracks. I met late one night

> a few years

> ago when she IM'd me in at 3 in the morning, in tears telling me

> that her

> Physicians assistant and Gastro interologist were telling her that

> she had to be

>

> sober and pass certain tests in order to obtain a referral!?!?!. Now

> I know that

>

> the decision to evaluate is in the hands of the transplant team, and

> she wasnt

> even at the Cleveland clinic yet. This was coming from someone in

> private

> practice. I assure her that these whackos would have exactly as much

> say in her

> getting on the list as she let them, and to bypass them like a car

> on the free

> way. Make a signal, move to the left lane, and HIT THAT GAS! She did

> so the very

>

> next week , and called me on the phone, and was so excited, she

> could barely

> keep it in, she was going for a transplant evaluation, and doctor

> quackery and

> his trusty ass istant were no where to be found. She died having

> been on the

> list for around a year if my memory serves me. At last she was

> trying to live.

> Now if I could only muster the courage to follow in her foot steps.

> Love, Bobby

>

> ________________________________

>

> To: " livercirrhosissupport "

> <livercirrhosissupport >

> Sent: Sat, July 30, 2011 3:27:18 AM

> Subject: Re: Recent diagnosis of

> cirrohosis of the

> liver

>

> Bobby, what you say is so true. When my husband was first diagnosed

> with

> advanced cirrhosis, the dr told me that the liver transplant list is

> quite

> long. My reply was " It'll be even longer if we wait. We need to get

> him on

> that list NOW. " The rest is history. Jackie

>

>

> To: livercirrhosissupport

> Sent: Saturday, July 30, 2011 4:44 AM

> Subject: Re: Recent diagnosis of

> cirrohosis of the

> liver

>

> The referral to see a hepatologist is sometimes done by a physician

> acting on

> his own, but there are plenty who will wait untill the patient is

> buried in the

> cemetery before considering it. My loved on Ardis spent years going

> to the

> public hospital, Denver health medical center. There were 12 doctors

> following

> her case. One doctor wrote her a letter to give to social sescurity

> to prove her

>

> disabled, and the letter said that she needed a liver transplant,

> but would need

>

> medicare in order to qualify for one. This was because she had no

> money and no

> job. That doctor did not refer her for a transplant, nor did any of

> the other 11

>

> doctors!! The only way she ever got one was after she had won her

> social

> security case, and was being seen at the university of Colorado

> hospital, (I

> refused to take her to Denver health ever again) and they desparatly

> wanted to

> discharge her after 14 days in-patient, and I told them that unless

> I had a

> referral for a skilled nursing facility and an appointment on the

> calendar to

> see the transplant doctor, my wife and I were going ton wheel her

> right up to

> the emergency room intake counter and they knew that I knew that

> they would have

>

> to readmit her because she was in liver failure and kidney failure,

> and in no

> shape to be discharged without some kind of plan. The met all of our

> demands,

> and she get her appointment with the hepatologist, who is now my

> hepatologist.

>

> When a surgeon took my gallbladder out two months after Ardis died,

> my wife

> immediately called our PCP and asked her for a referral to see the

> hepatologist.

>

> That was November 17th 2006. I got to see him on December 19th, and

> have seen

> him every 6 months since except when I am in the hospital for

> something, and

> see him more often.

>

> Your husband has the necessary complications to qualify for a

> transplant

> evaluation...unless he is currently using alcohol or only recently

> quit

> drinking, there would be no logical reason to wait. It is a big

> deal, I know,

> and scary, some people choose to not even consider a transplant, but

> I just want

>

> you to be aware that even some experienced doctors havent got a clue

> on how to

> proceed when a patient is diagnosed with liver disease, and I am not

> the only

> member of this group who has lost a loved one who might have

> benefited from an

> early transplant, before they became too too sick...

>

> The problem was that we werent helped out by doctors who acted like a

> transplant wasnt even an option and we just didnt know any better,

> now we do.

> Bobby

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Fri, July 29, 2011 2:17:30 PM

> Subject: Re: Recent diagnosis of

> cirrohosis of the

> liver

>

> Thanks for the info Bobby. We live in Houston, Tx & his dr is going

> to refer

> him, but I'm not sure why he has not yet? The first thing the dr

> told us when

> he walked into the room was that 'he'd killed his liver' drinking.

> He did

> mention another referral to a liver specialist, but I'm guessing is

> just waiting

>

> on the testing to come back. I had tried to talk hubby into letting

> me take him

> downtown to one of the hospitals where they would have a liver

> specialist but he

>

> got VERY bull headed and declined, stating he would just go to this

> Dr and wait

> to see what they said.

>

>

> >

> > Hi, my name is Bobby. I was diagnosed with end stage liver disease

> after seeing

> >

> >

> >

> > my best friend in the whole world Ardis die from it. Both if us

> got it from

> > drinking, and I was able to stop after her death and have been

> sober going on 5

> >

> >

> >

> > years.

> > Your post brings back the past to me, because it sounds a lot like

> how Ardis

> > would go in to the hospital, and they would get her blood work to

> stabilize,

> >and

> >

> > then send her home ... 13 time in one year!!

> > When I was diagnosed, the very first thing I did was seek a

> transplant

> > evaluation. I was told that my liver was well compensated, and

> there was no

> >need

> >

> > for a transplant, but then later on things changed a bit. I was

> told that i

> >have

> >

> > other serious complications, but that they would monitor the

> situation and if

> >my

> >

> > complications became severe enough, I would become eligible for an

> expedited

> > transplant. I am not sure why you were told to go see a gastro

> interologist.

> >

> >

> > My advice is that a gastro interologist is a last resort, only if

> there are no

>

> > large hospitals in your area, or no transplant centers nearby.

> Then it would be

> >

> >

> >

> > understandable. A liver specialist is the right choice for the

> treatment of

> > liver disease.

> >

> >

> > Lactulose is for the treatment of hepatic encephalopathy. Many of

> us here take

>

> > it on a regular basis. My loved one Ardis was also on it. She had

> >encephalopathy

> >

> > so bad that she did not know where she was at times, and thought

> that the year

>

> > was 1973! Lactulose converts certain toxins so that they can be

> eliminated in

> > the bowel movement, since the liver cannot do this effectively any

> more. Was

> > your husband experiencing altered personality in the hospital? If

> not, a high

> > ammonia reading might have cause the doctors to prescribe this. It

> is more

> > common to see a person become altered mentally, but occasionally

> they are

> > normal, but have a high ammonia reading. Did the hospital staff

> explain this to

> >

> >

> >

> > you?

> >

> > Many folks come on this group and say that their doctors keep them

> in the

> > dark. Love, Bobby

> >

> >

> >

> >

> > ________________________________

> >

> > To: livercirrhosissupport

> > Sent: Sat, July 23, 2011 9:56:38 PM

> > Subject: Recent diagnosis of cirrohosis

> of the liver

> >

> >

> > Hi Everybody.

> >

> > I'm purely stumped by this disease. My husband was diagnosed as

> having

> > cirrohosis of the liver on July 3 of this year. They did testing

> while he

> > was in the ER, stating that yes he had it, along with acites, and

> of course

> > they looked at his left leg and foot because it was swollen. They

> admitted

> > him and kept him 2 days, with no other testing except for blood

> work. At

> > the end of the 2nd day, his Dr poked her head into his hospital

> room doorway

> > and said they were 'sending him home'. He came home with 2

> prescriptions

> > for antibiotics, with instructions to see his PCP, and to get a

> referral to

> > a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've

> referred

> > him to a Gastro who will see him on Monday at 2:45 pm.

> >

> > One of the things that has me stumped is that they've put him on 2

> > tablespoons of lactulose 3 times a day, which makes him have to

> wear a

> > diaper because he can't make it to the bathroom in time without

> soiling his

> > clothes. The smell is horrendous and just makes me nauseated when

> he does

> > have a bowel movement. Without the lactulose, he seems to not be

> able to go

> > to the bathroom.

> >

> > Any words of encouragement would be greatly appreciated. I'm past

> the

> > point of understanding much at this point.

> >

> > Thanks,

> > Sandy

> >

> > --

> > When people show you who they are the first time........Believe

> them!

> >

> >

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Posted
Posted

Thanmkls for telling us this ,Bob.  was an amazing woman.

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

To: livercirrhosissupport

Sent: Monday, August 1, 2011 1:53 AM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

I was so sad when I heard she had passed.  I hate this horrible 

disease and what it does.  did turn her life around.  Many 

people never do.  So kudos to !  I wish I had gotten to know her 

better.

Roni

> My shrink says that talking about things lessens the pain.  

> related the

> following to me: She was lying in a hospital, bleeding from 

> everywhere she

> could. She asked the nurse " am I going to die " ? and the nurse told 

> her " I'm so

> sorry, but you are going to die, probably very very soon... have you 

> thought

> about getting a liver transplant? " . She said a lightbulb went off in 

> her head.

> She hadnt even ever considered that option. She had done time in 

> prison for

> bank robbery, (can you even believe that?) and had tried to turn her 

> life

> around. She didnt think anyone would give her a chance given her 

> past. She didnt

> die that night, and soon found this group. I talked to her about AA 

> and

> recovery, and she went through a treatment program to comply with 

> the doctors

> wishes. That doctor had convinced her that she couldnt even get a 

> referral until

> she had completed a program to his satisfaction. She was in a lot of 

> pain from

> her liver ,yet choose the recovery program, and the pee tested, so 

> she couldnt

> get any thing for her pain... not even one vicodin. She really put 

> her nose to

> the grindstone and started living the straight life, and I thought 

> she was well

> on her way to getting that transplant. She ended up listed for a 

> liver translant

> at the Cleveland clinic. It's supposed to be one of the best 

> hospitals in the

> country. My face book page still says " poked you...(for 

> you non

> face book users, that is a type of greeting) Then I remember she is 

> gone, and I

> never took the time to poke her back. Love, Bobby

>

> ________________________________

>

> To: " livercirrhosissupport "

> <livercirrhosissupport >

> Sent: Sat, July 30, 2011 7:28:13 PM

> Subject: Re: Recent diagnosis of 

> cirrohosis of the

> liver

>

> Bobby,I really miss . She got pneumonia and her body & immune 

> system

> couldn't fight it. I was so shocked when they let me know she had 

> passed. She

> had a wicked sense of humor and i loved her!! She died way, way too 

> soon!

>

> Love,Jill

>

> We don't remember days, we remember moments.

> Life is not measured by the breaths we take,but by the moments that 

> take our

> breath away.

>

>

> To: livercirrhosissupport

> Sent: Saturday, July 30, 2011 11:16 AM

> Subject: Re: Recent diagnosis of 

> cirrohosis of the

> liver

>

> I remember! You took the bull by the horns, and said " where is the 

> beginning of

>

> the line? " I remember telling you that I am always 21st in line for 

> a 20 ham

> giveaway...It's one of our anecdotes around here.

>

> I don't know why it is, but so many people come to this group having 

> been

> dropped right through the cracks. I met late one night 

> a few years

> ago when she IM'd me in at 3 in the morning, in tears telling me 

> that her

> Physicians assistant and Gastro interologist were telling her that 

> she had to be

>

> sober and pass certain tests in order to obtain a referral!?!?!. Now 

> I know that

>

> the decision to evaluate is in the hands of the transplant team, and 

> she wasnt

> even at the Cleveland clinic yet. This was coming from someone in 

> private

> practice. I assure her that these whackos would have exactly as much 

> say in her

> getting on the list as she let them, and to bypass them like a car 

> on the free

> way. Make a signal, move to the left lane, and HIT THAT GAS! She did 

> so the very

>

> next week , and called me on the phone, and was so excited, she 

> could barely

> keep it in, she was going for a transplant evaluation, and doctor 

> quackery and

> his trusty ass istant were no where to be found. She died having 

> been on the

> list for around a year if my memory serves me. At last she was 

> trying to live.

> Now if I could only muster the courage to follow in her foot steps. 

> Love, Bobby

>

> ________________________________

>

> To: " livercirrhosissupport "

> <livercirrhosissupport >

> Sent: Sat, July 30, 2011 3:27:18 AM

> Subject: Re: Recent diagnosis of 

> cirrohosis of the

> liver

>

> Bobby, what you say is so true. When my husband was first diagnosed 

> with

> advanced cirrhosis, the dr told me that the liver transplant list is 

> quite

> long. My reply was " It'll be even longer if we wait. We need to get 

> him on

> that list NOW. " The rest is history. Jackie

>

>

> To: livercirrhosissupport

> Sent: Saturday, July 30, 2011 4:44 AM

> Subject: Re: Recent diagnosis of 

> cirrohosis of the

> liver

>

> The referral to see a hepatologist is sometimes done by a physician 

> acting on

> his own, but there are plenty who will wait untill the patient is 

> buried in the

> cemetery before considering it. My loved on Ardis spent years going 

> to the

> public hospital, Denver health medical center. There were 12 doctors 

> following

> her case. One doctor wrote her a letter to give to social sescurity 

> to prove her

>

> disabled, and the letter said that she needed a liver transplant, 

> but would need

>

> medicare in order to qualify for one. This was because she had no 

> money and no

> job. That doctor did not refer her for a transplant, nor did any of 

> the other 11

>

> doctors!! The only way she ever got one was after she had won her 

> social

> security case, and was being seen at the university of Colorado 

> hospital, (I

> refused to take her to Denver health ever again) and they desparatly 

> wanted to

> discharge her after 14 days in-patient, and I told them that unless 

> I had a

> referral for a skilled nursing facility and an appointment on the 

> calendar to

> see the transplant doctor, my wife and I were going ton wheel her 

> right up to

> the emergency room intake counter and they knew that I knew that 

> they would have

>

> to readmit her because she was in liver failure and kidney failure, 

> and in no

> shape to be discharged without some kind of plan. The met all of our 

> demands,

> and she get her appointment with the hepatologist, who is now my 

> hepatologist.

>

> When a surgeon took my gallbladder out two months after Ardis died, 

> my wife

> immediately called our PCP and asked her for a referral to see the 

> hepatologist.

>

> That was November 17th 2006. I got to see him on December 19th, and 

> have seen

> him every 6 months since except when I am in the hospital for 

> something, and

> see him more often.

>

> Your husband has the necessary complications to qualify for a 

> transplant

> evaluation...unless he is currently using alcohol or only recently 

> quit

> drinking, there would be no logical reason to wait. It is a big 

> deal, I know,

> and scary, some people choose to not even consider a transplant, but 

> I just want

>

> you to be aware that even some experienced doctors havent got a clue 

> on how to

> proceed when a patient is diagnosed with liver disease, and I am not 

> the only

> member of this group who has lost a loved one who might have 

> benefited from an

> early transplant, before they became too too sick...

>

> The problem was that we werent helped out by doctors who acted like a

> transplant wasnt even an option and we just didnt know any better, 

> now we do.

> Bobby

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Fri, July 29, 2011 2:17:30 PM

> Subject: Re: Recent diagnosis of 

> cirrohosis of the

> liver

>

> Thanks for the info Bobby. We live in Houston, Tx & his dr is going 

> to refer

> him, but I'm not sure why he has not yet? The first thing the dr 

> told us when

> he walked into the room was that 'he'd killed his liver' drinking. 

> He did

> mention another referral to a liver specialist, but I'm guessing is 

> just waiting

>

> on the testing to come back. I had tried to talk hubby into letting 

> me take him

> downtown to one of the hospitals where they would have a liver 

> specialist but he

>

> got VERY bull headed and declined, stating he would just go to this 

> Dr and wait

> to see what they said.

>

>

> >

> > Hi, my name is Bobby. I was diagnosed with end stage liver disease 

> after seeing

> >

> >

> >

> > my best friend in the whole world Ardis die from it. Both if us 

> got it from

> > drinking, and I was able to stop after her death and have been 

> sober going on 5

> >

> >

> >

> > years.

> > Your post brings back the past to me, because it sounds a lot like 

> how Ardis

> > would go in to the hospital, and they would get her blood work to 

> stabilize,

> >and

> >

> > then send her home ... 13 time in one year!!

> > When I was diagnosed, the very first thing I did was seek a 

> transplant

> > evaluation. I was told that my liver was well compensated, and 

> there was no

> >need

> >

> > for a transplant, but then later on things changed a bit. I was 

> told that i

> >have

> >

> > other serious complications, but that they would monitor the 

> situation and if

> >my

> >

> > complications became severe enough, I would become eligible for an 

> expedited

> > transplant. I am not sure why you were told to go see a gastro 

> interologist.

> >

> >

> > My advice is that a gastro interologist is a last resort, only if 

> there are no

>

> > large hospitals in your area, or no transplant centers nearby. 

> Then it would be

> >

> >

> >

> > understandable. A liver specialist is the right choice for the 

> treatment of

> > liver disease.

> >

> >

> > Lactulose is for the treatment of hepatic encephalopathy. Many of 

> us here take

>

> > it on a regular basis. My loved one Ardis was also on it. She had

> >encephalopathy

> >

> > so bad that she did not know where she was at times, and thought 

> that the year

>

> > was 1973! Lactulose converts certain toxins so that they can be 

> eliminated in

> > the bowel movement, since the liver cannot do this effectively any 

> more. Was

> > your husband experiencing altered personality in the hospital? If 

> not, a high

> > ammonia reading might have cause the doctors to prescribe this. It 

> is more

> > common to see a person become altered mentally, but occasionally 

> they are

> > normal, but have a high ammonia reading. Did the hospital staff 

> explain this to

> >

> >

> >

> > you?

> >

> > Many folks come on this group and say that their doctors keep them 

> in the

> > dark. Love, Bobby

> >

> >

> >

> >

> > ________________________________

> >

> > To: livercirrhosissupport

> > Sent: Sat, July 23, 2011 9:56:38 PM

> > Subject: Recent diagnosis of cirrohosis 

> of the liver

> >

> >

> > Hi Everybody.

> >

> > I'm purely stumped by this disease. My husband was diagnosed as 

> having

> > cirrohosis of the liver on July 3 of this year. They did testing 

> while he

> > was in the ER, stating that yes he had it, along with acites, and 

> of course

> > they looked at his left leg and foot because it was swollen. They 

> admitted

> > him and kept him 2 days, with no other testing except for blood 

> work. At

> > the end of the 2nd day, his Dr poked her head into his hospital 

> room doorway

> > and said they were 'sending him home'. He came home with 2 

> prescriptions

> > for antibiotics, with instructions to see his PCP, and to get a 

> referral to

> > a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've 

> referred

> > him to a Gastro who will see him on Monday at 2:45 pm.

> >

> > One of the things that has me stumped is that they've put him on 2

> > tablespoons of lactulose 3 times a day, which makes him have to 

> wear a

> > diaper because he can't make it to the bathroom in time without 

> soiling his

> > clothes. The smell is horrendous and just makes me nauseated when 

> he does

> > have a bowel movement. Without the lactulose, he seems to not be 

> able to go

> > to the bathroom.

> >

> > Any words of encouragement would be greatly appreciated. I'm past 

> the

> > point of understanding much at this point.

> >

> > Thanks,

> > Sandy

> >

> > --

> > When people show you who they are the first time........Believe 

> them!

> >

> >

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Posted
Posted

our wendy???? the fun loving lets kick up the dust wendy has died???? omg i am a

terrable friend!! i didnt even know, i am so consumed with bobby and the custody

battle over the baby,that i rarely have time to stay on the comp. for very long

like i used to. god love her

> >

> > Hi, my name is Bobby. I was diagnosed with end stage liver disease after

seeing

> >

> >

> > my best friend in the whole world Ardis die from it. Both if us got it from

> > drinking, and I was able to stop after her death and have been sober going

on 5

> >

> >

> > years.

> > Your post brings back the past to me, because it sounds a lot like how Ardis

> > would go in to the hospital, and they would get her blood work to stabilize,

> >and

> >

> > then send her home ... 13 time in one year!!

> > When I was diagnosed, the very first thing I did was seek a transplant

> > evaluation. I was told that my liver was well compensated, and there was no

> >need

> >

> > for a transplant, but then later on things changed a bit. I was told that i

> >have

> >

> > other serious complications, but that they would monitor the situation and

if

> >my

> >

> > complications became severe enough, I would become eligible for an expedited

> > transplant. I am not sure why you were told to go see a gastro interologist.

> >

> >

> > My advice is that a gastro interologist is a last resort, only if there are

no

>

> > large hospitals in your area, or no transplant centers nearby. Then it would

be

> >

> >

> > understandable. A liver specialist is the right choice for the treatment of

> > liver disease.

> >

> >

> > Lactulose is for the treatment of hepatic encephalopathy. Many of us here

take

>

> > it on a regular basis. My loved one Ardis was also on it. She had

> >encephalopathy

> >

> > so bad that she did not know where she was at times, and thought that the

year

>

> > was 1973! Lactulose converts certain toxins so that they can be eliminated

in

> > the bowel movement, since the liver cannot do this effectively any more. Was

> > your husband experiencing altered personality in the hospital? If not, a

high

> > ammonia reading might have cause the doctors to prescribe this. It is more

> > common to see a person become altered mentally, but occasionally they are

> > normal, but have a high ammonia reading. Did the hospital staff explain this

to

> >

> >

> > you?

> >

> > Many folks come on this group and say that their doctors keep them in the

> > dark. Love, Bobby

> >

> >

> >

> >

> > ________________________________

> > From: birdlady Tx <birdlady.tx@>

> > To: livercirrhosissupport

> > Sent: Sat, July 23, 2011 9:56:38 PM

> > Subject: Recent diagnosis of cirrohosis of the

liver

> >

> >

> > Hi Everybody.

> >

> > I'm purely stumped by this disease. My husband was diagnosed as having

> > cirrohosis of the liver on July 3 of this year. They did testing while he

> > was in the ER, stating that yes he had it, along with acites, and of course

> > they looked at his left leg and foot because it was swollen. They admitted

> > him and kept him 2 days, with no other testing except for blood work. At

> > the end of the 2nd day, his Dr poked her head into his hospital room doorway

> > and said they were 'sending him home'. He came home with 2 prescriptions

> > for antibiotics, with instructions to see his PCP, and to get a referral to

> > a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> > him to a Gastro who will see him on Monday at 2:45 pm.

> >

> > One of the things that has me stumped is that they've put him on 2

> > tablespoons of lactulose 3 times a day, which makes him have to wear a

> > diaper because he can't make it to the bathroom in time without soiling his

> > clothes. The smell is horrendous and just makes me nauseated when he does

> > have a bowel movement. Without the lactulose, he seems to not be able to go

> > to the bathroom.

> >

> > Any words of encouragement would be greatly appreciated. I'm past the

> > point of understanding much at this point.

> >

> > Thanks,

> > Sandy

> >

> > --

> > When people show you who they are the first time........Believe them!

> >

> >

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Guest guest

Guest guest

Posted
Posted

I know,Barby...wasn't she just the best!  We didn't live far from each

other...about 2 1/2 hours..and were always going to get together and now she's

gone. It awful. 

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

Life is not measured by the breaths we take,but by the moments that take our

breath away.

To: livercirrhosissupport

Sent: Friday, August 5, 2011 8:49 AM

Subject: Re: Recent diagnosis of cirrohosis of the

liver

 

our wendy???? the fun loving lets kick up the dust wendy has died???? omg i am a

terrable friend!! i didnt even know, i am so consumed with bobby and the custody

battle over the baby,that i rarely have time to stay on the comp. for very long

like i used to. god love her

> >

> > Hi, my name is Bobby. I was diagnosed with end stage liver disease after

seeing

> >

> >

> > my best friend in the whole world Ardis die from it. Both if us got it from

> > drinking, and I was able to stop after her death and have been sober going

on 5

> >

> >

> > years.

> > Your post brings back the past to me, because it sounds a lot like how Ardis

> > would go in to the hospital, and they would get her blood work to stabilize,

> >and

> >

> > then send her home ... 13 time in one year!!

> > When I was diagnosed, the very first thing I did was seek a transplant

> > evaluation. I was told that my liver was well compensated, and there was no

> >need

> >

> > for a transplant, but then later on things changed a bit. I was told that i

> >have

> >

> > other serious complications, but that they would monitor the situation and

if

> >my

> >

> > complications became severe enough, I would become eligible for an expedited

> > transplant. I am not sure why you were told to go see a gastro interologist.

> >

> >

> > My advice is that a gastro interologist is a last resort, only if there are

no

>

> > large hospitals in your area, or no transplant centers nearby. Then it would

be

> >

> >

> > understandable. A liver specialist is the right choice for the treatment of

> > liver disease.

> >

> >

> > Lactulose is for the treatment of hepatic encephalopathy. Many of us here

take

>

> > it on a regular basis. My loved one Ardis was also on it. She had

> >encephalopathy

> >

> > so bad that she did not know where she was at times, and thought that the

year

>

> > was 1973! Lactulose converts certain toxins so that they can be eliminated

in

> > the bowel movement, since the liver cannot do this effectively any more. Was

> > your husband experiencing altered personality in the hospital? If not, a

high

> > ammonia reading might have cause the doctors to prescribe this. It is more

> > common to see a person become altered mentally, but occasionally they are

> > normal, but have a high ammonia reading. Did the hospital staff explain this

to

> >

> >

> > you?

> >

> > Many folks come on this group and say that their doctors keep them in the

> > dark. Love, Bobby

> >

> >

> >

> >

> > ________________________________

> > From: birdlady Tx <birdlady.tx@>

> > To: livercirrhosissupport

> > Sent: Sat, July 23, 2011 9:56:38 PM

> > Subject: Recent diagnosis of cirrohosis of the

liver

> >

> >

> > Hi Everybody.

> >

> > I'm purely stumped by this disease. My husband was diagnosed as having

> > cirrohosis of the liver on July 3 of this year. They did testing while he

> > was in the ER, stating that yes he had it, along with acites, and of course

> > they looked at his left leg and foot because it was swollen. They admitted

> > him and kept him 2 days, with no other testing except for blood work. At

> > the end of the 2nd day, his Dr poked her head into his hospital room doorway

> > and said they were 'sending him home'. He came home with 2 prescriptions

> > for antibiotics, with instructions to see his PCP, and to get a referral to

> > a Gastro Dr. He's gone to the PCP twice now in 3 days, and they've referred

> > him to a Gastro who will see him on Monday at 2:45 pm.

> >

> > One of the things that has me stumped is that they've put him on 2

> > tablespoons of lactulose 3 times a day, which makes him have to wear a

> > diaper because he can't make it to the bathroom in time without soiling his

> > clothes. The smell is horrendous and just makes me nauseated when he does

> > have a bowel movement. Without the lactulose, he seems to not be able to go

> > to the bathroom.

> >

> > Any words of encouragement would be greatly appreciated. I'm past the

> > point of understanding much at this point.

> >

> > Thanks,

> > Sandy

> >

> > --

> > When people show you who they are the first time........Believe them!

> >

> >

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