RE: Re: Encephalopathy - Hi M.

[Guest guest]

Yes,

I’m that . Only now I eat Bocca burgers (vegetable substitute)

and baked chips. I’m the one who lost 125 pounds this year. I’m

still eating right.

I

was on Neomycin for a time as well as the lactulose, but he took me off

that. I’m thinking I’m on enough meds; all my doctors shake

their heads when they see my list.

I’m

married- my wife is a pediatric nurse who does pulmonary and CF. She goes

with me to appointments to help remember things. She’s very

supportive!

They

did my MELD when I was in the hospital, but I don’t recall what it was-

not high, I know. 9 at the worst, I think. Need 15 (at least) for

transplant I understand. I’m seeing a hepatologist; I do what he

says, though we haven’t gone into details about a transplant.

Because of my weight loss, he says I may not need one, especially if I can

reach SVR.

m

From:

HepatitisCSupportGroupForDummies

[mailto:HepatitisCSupportGroupForDummies ] On Behalf Of Deb

Sent: Sunday, December 28, 2008 1:30 PM

To: hepatitiscsupportgroupfordummies

Subject: Re: Encephalopathy - Hi

M.

Buddy yes it is all scary but we do truly understand and

how you are feeling because we have been there or are in it now.

It must be a very

emotional time for you in your stage and also loss of your close friend of

many years.

It's nasty stuff put

take as much lactulose as your Dr as prescribed for you. Also report

any new or worsening symptoms asap. That is how they judge if any

further rx's or tx's are needed. Some Dr's are also giving other Rx's

with lactulose and a certain antibiotic to treat ease it too. Toxins

also found in gi gastro intestinal tracts stomach.

Your proper diet at

this time is also very important does ease the enceph symptoms and build

up of more toxins. Many specialists will give you

a tailor made special diet for you or refer you to a trained HCV

dietitian to help you.

Are you the

that still loves loaded hamburgers and french fries ??

In general all fresh

foods nothing packaged or fast foods loaded with salts bad fats and

preservatives small portions low lean meats mostly chicken - fish - pork very

low or no red meats lots of fresh veggies. If on fluid pills be careful

of too much fluid intake but keep hydrated without the day.

My Hep Dr and Team had

me eating 4 or 5 smaller meals throughout the day helps with digestions fuel

energy lower build up of toxins all at 1 time and not taxing putting more of

a strain on liver and stomach more.

Liver is part

of the intestinal processes too high bad fats foods are not broken down

as fast processed as well anymore adding to build up of toxins.

Yes we do become

unstable on our feet too legs body feels weak and even our gait how we walk

and distribute our weight while walking changes too. If you noticed you

may be walking with a more open wider stance gait walk trying to balance

better using shifting your hips and weight with each step.

Forgetfulness bad long

and short term memory and feeling like you and your brain is in a

fog.

For me all the way to

the end of esld right before my transplant I would have good and bad days

spells or moments. Some times clear as a bell and sometimes

not. I could feel it coming on worse and if I tried to do to

much. It was like a light switch was thrown brain slower turned down or

off for awhile than light switch to brain body would just switch back on

again all by itself and I was clear as a bell and had more energy

again. Sometimes in true fog felt dumb as a stump and than times

clear and brain back on up and running again.

It's the not knowing

and when me body and brain would switch off that would get to me.

It was like body brain said ok we did enough time for a nap now and towards

the end right before my transplant it was no stopping it. I had to take

it easy relax sleep or I would knock out for a few anyway.

Pace yourself your

activities movements carefully like conserving energy and brain fuel too.

If you don't mind me

asking - Do you live alone or have someone in house with you to help and

support you ???

Sorry it's hard keeping

up with everyone and for new members to understand too.

Do you have a MELD

score yet. It will fluctuate drive you nuts seeing it going up and down

and still feeling like hell. Are you seeing a Hepatologist

and have you decided on a transplant or not - medically able to be listed for

transplant ????

It follows some of the

same patterns processes but is also different for everyone. Some people

don't get all the symptoms of esld or as bad.

We are here for you all

the way and truly do understand. We have other members at your stage

now or have been where you are now and experienced all the way through esld a

transplant and beyond.

For me I got through it

all and to this day with the proper mind set for the circumstances.

Accepting it nothing else I can do about it keep brain mind busy active as

possible on productive positive things and never allow the negatives to

take complete control.

The mind and positive

thinking is a great wonderful thing and tool. I know you know these things

and how a person can even overcome it all even living with constant

pains with the proper mind set. We just need to find it and

get there. Good rx's help too.

Email me at any time

just between you and me to talk about anything.

By sharing and

explaining our physical and emotional experiences in group it supports

us and supports helps educates us all and with our replies too.

Hang In There

!!!!!!!!!!

All The Best

Deb