Re: New to the Group

[Guest guest]

Hi Lesley,

I'm Judy. Welcome to the group. I don't post much, but

I read. I have the brain for pretty bad. I have

autoimmune hepatitis. What led to your illnes. My

liver is quite diseased. I am on prednisone trying to

get it into remission. My enzymes are in the normal

range. I am weaning off prednisone, or down to a lower

dose and will be adding another drug which my doctor

and I will discuss at my next appointment.

I wanted to ask you, does the fog get any better when

the disease goes into remisson and the immune system

isn't attacking it any more? In my doctor's notes to

my PCP, he stated " we will be agressive with the

treatement, she is well on her way to cirrhosis. "

Also, I wanted to ask about the medication that

metabolizes in the liver. Do toxins build up when the

meds. build up in the liver and does it cause brain

fog? There is so much I don't know. Anyone that can

answer any of these questions, I would appreciate it.

Thanks,

Judy

--- Lesley wrote:

> Hi,

>

> I am new to the group, hopefully to give any

> information I can. I am

> post liver transplant in March of this year. Last

> year I was

> hospitalized for six weeks with hepatic

> encephalopathy (sp?) which

> progressed to end stage liver disease. I was not

> able to use my

> computer prior to tranplant (my mind was very

> foggy), and would have

> appreciated being in a group such as this then. If

> I can help anyone

> at all, please let me know.

>

> Lesley

>

>

>

__________________________________________________

[Guest guest]

Judy, what are your ammonia levels? Are you taking lactulose?

If you're not taking lactulose, you might ask your doctor if he thinks it

would help you.

Dorothy

[Guest guest]

Hi a,

Welcome to the group. I hope we can give you comfort and help here. Cirrhosis

seems to effect everyone differently. My wife had cirrhosis for two years but

her symptoms were more gradual.

I'm surprised that when the doctors discovered gallstones, they didn't do any

other tests to determine the cause. And, I'm no doctor, but even I know that a

nodular liver isn't normal.

Is he still taking NSAID's? If so, please get another opinion from another

doctor. This can also contribute to his liver damage and varices.

Hep B is viral and there is treatment available. Hopefully, your husbands liver

damage isn't too severe and he can recover with the right treatment.

You asked how we get through day to day. I don't know. My wife was amazingly

strong willed. She took care of our daughter, (who was 2 at the time) while I

worked.I would come home from work and pick up where my wife left off. Cooked

dinner (not always tasteful), did dishes, vaccumed, finished laundry etc and let

my wife rest or play Sonic on the playstation2. She eventually became more

fatigued as time wore on.

I'm a little cynical when it comes to doctors. To me they seemed to trivialized

my wifes condition and seemed to down play the importance or severity of her

liver damage. She wasn't even placed onto a transplant list until the week

before she passed away. One doctor noted it being a year and half too late.

Let us know how the doctor visit goes in March. In the meantime, please read up

on cirrhosis. There are some things you can do, like improve his diet by

reducing sodium. Make sure he takes multi-vitamins etc. Elevate his feet to

alleviate any swelling or pain.

Lastly,

Talk to your husband about signing documents at the hospital that will allow you

to make medical decisions if he can't. This is important. I'll try to post more

information about that later. In the meantime....

Take advantage of the information here. Don't worry about how long your posts

are. We'll still read them. :-)

I hope and pray for the best for you and your husband. Stay strong. And stay on

top of this disease. Educate yourself as much as you can.

MaC

a Burke wrote: My

husband was diagnosed with cirrhosis 2 years ago while in the

hospital for kidney stones. He also had gallstones and had to have

his gallbladder removed this past May. When he had his gallbladder

out the doctor took pictures of his liver and you could see that his

liver was bumpy and lumpy if you will and the color was a pale pink.

The doctors did not stress the need for him to see a specialist at

that time. Two months later when he had kidney stones again blood

tests showed his liver levels were up but still the family doctor did

not push for a specialist. To make matters worse he has two disks in

his lower back that are causing him alot of pain. So the family

doctor sent him to a pain specialist who prescribe him vicodin,

muscle relaxers, and a NSAID. All of this medication was making him

sick to his stomach and dizzy. When he asked the specialist if he

should be taking all of this with his liver condition he did not tell

him to stop only told him to take a laxative for the constipation it

was also causing.

Christmas Eve this past year he got very sick. All he wanted to do

was sleep. Could not eat (if he did he was bloated). Was disoriented,

had itchy skin, and was weak. So a trip to the doctor showed his

liver levels high. He was retested a week later and levels were even

higher. After seeing a gastro doctor he was told that chronic hep b

was what had made him so sick. He had an upper GI endoscopy done and

that showed he has portal hypertension and esophagial varices. Also

an erosion in his stomach that was giving him alot of pain. We go

back to the specialist March 1st. He had 10 tubes of blood taken at

one time by the specialist orders and we have to wait until then to

get more results.

What I am wondering is how do most of you get through day whether at

work or at home. I have seen in the last month and a half how hard

it is for him to function on a daily basis. I also know there are

many conditions that are caused by cirrhosis and how quickly things

can change. Any words of advice would be helpful. Sorry about the

long post but also I feel there is more I could add but won't at this

time.

a

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