Re: need to vent

August 27, 2010

Dear Bonnie, the American association for the study of liver diseases

(http://www.aasld.org/Pages/Default.aspx)

http://f1.grp.yahoofs.com/v1/sJp3TJukpgHfvL4fWYZCUlMDJFLEpQGWc6VdGxHRkYxJUM40MOM\

DUujShDXcaTjCpzeLms4eM4SLMln2WbEb/evalu_patient_livertransplantation.pdf

says that at the first sign of decompensation, (the first major development of

complications), OR MELD of 10 or higher needs to be evaluated for placement on

the list. This is done by hepatologists at a TRANSPLANT hospital, and NO one

else. You may hear all kinds of stories,and in Dallas you might need a MELD of

25-30, Where here in Denver, 20 will get you there... it all varies. But only

trust a hepatologist at a Transplant center. Keep in mind- the AASLD guidlines

are just guidlines, not hard fast rules. Love, Bobby

To: livercirrhosissupport

Sent: Thu, August 26, 2010 2:49:12 PM

Subject: Re: need to vent

Jackie, You know I have POA for my mom, but I really never thought about it for

my husband. You are right, because should his ammonia levels make him confused

to the point you are talking about, I will need it. His liver specialist said if

he is sleeping all the time and i cant wake him up, thats when I need to take

him to the hospital. In anyone's experience with a MELD score? The doc said

that 14 was very close to needing a transplant, but at 16 he will need to be on

the list. So he cannot get on the list. Plus where he has Hep C. I dont think

he's eligible. On top of that he applied for social security and right now only

has limited medical coverage through the county. we got a phone call from his

primary physician who made us go in first thing in the morning to discuss the

low WBC and platelets and his high ammonia levels, so we were told to go to the

ER for evaluation or to drain the acites. When i brought him to the hospital

with lab results in hand, the doctor walked in, said, " numbers mean nothing "

this man did not know my husbands baseline (he was falling asleep on the bed at

the ER) then he sends in the receptionist and tells us we need to give 200

dollars to finish the visit. I asked for what, they said they it would cost a

very high amount to treat him " i asked well are u going to admit him for 200

dollars? she said i dont know maam. i was very angry, she handed him lactulose

Rx and we left. frustrating. that was a few weeks ago. He is sleeping,

complains of having no energy. If he has a MELD score of 14, how bad is that?

when he walks his right leg swells up so bad. If he doesnt get a transplant,

what is the usual progression? will he live for another 5 years? Or is it all

subjective? I feel so bad for him, oh, he hasnt lost any weight. He is 305

pounds and 6'1 " . thanks, Bonnie

________________________________

To: livercirrhosissupport

Sent: Wed, August 25, 2010 9:24:13 PM

Subject: Re: need to vent

Hi Bonnie: I'm Jackie. My husband had a liver transplant on May 26th and he

was quite sick before he was transplanted. His cirrhosis came from

non-alcoholic fatty liver disease, which progressed to 3 cancerous tumors in the

right lobe of his liver. His meld score was in the 30's when he was

transplanted. We went thru a handful of months of decompensated liver disease

after he was injected with chemo to kill off the liver tumors. He had many of

the symptoms you talk about, like elevated ammonia. We were able to control the

ammonia levels with lactulose and xifaxin. He also had fluid building up in his

abdomen (ascites) which we also managed by having the fluid drained off once

every 2 weeks. It's a proceedure called paracentesis. He was tired all the

time and lost over 60 lbs due to the diaharria from lactulose and loss of

appetite. He lost muscle mass and became very weak. There is hope, as he has

had his transplant and is doing

much better now, gaining weight and muscle mass. He's eating like a teenager!

(LOL) You need to know the side effects of this disease and how to manage

them. You will learn much on this forum, as I did. It sounds like you are

doing a good job being an advocate for your husband and learning all you can.

One thing I would suggest is that as soon as possible you get a legal and

medical power of attorney for your husband. That way you will be able to make

decisions in his best interest when he is unable to speak for himself, for

instance, when his ammonia levels are up. I'll tell you a quick story of what

happened to me. The first time my husband had a problem with his ammonia level

I called for an ambulance. They came and took him to the hospital where he was

admitted for 3 days. Once I got him home, a week later his ammonia was up again

and I called the ambulance. They came in to take him and remembered being here

last week. They

asked him if he wanted to go to the hospital and he told them he was all right.

All he wanted to do was sleep and not take his lactulose or pills. To my

horror, the paramedic said they couldn't take him to the hospital unless he was

willing to go. I explained to them that he was not capable of making that

decision because of his ammonia level, and if he continued to lay there and

sleep and not get his medicine or treatment to lower the ammonia that he would

go into a coma and die. The paramedic said to me " maybe he wants to let nature

take it's course. " I was horrified! And I finally convinced this policeman who

was with them that he needed to go to the hospital. After that episode I had a

lawyer come to the house so that we could sign papers to be each other's power

of attorney. Enough said on the importance of that. Please keep us posted on

your progress. Hoping your husband gets his new liver real soon. Jackie

Subject: Re: need to vent

To: livercirrhosissupport

Date: Wednesday, August 25, 2010, 9:00 PM

Hi everyone, I am glad to find this group and unsure how to navigate it.

Hopefully u all can give me some insight. My husband was admitted to the

hospital for 4 days in July. He was told prior to this that he has cirhossis

and Hepatitis C. His enzymes are up and down. His liver specialist said that

even though he isnt drinking, they will fluctuate. His white cells and

platelets are very low. Too low for the interferon and ribo shots. He is

using lactulose for the ammonia levels. they were at 77 while in the hospital

and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so

tired all the time, he sleeps so much. His liver specialist said that a med

rate of 16 he would need a liver transplant. His med rate is 14. He has

applied for disability. What should I expect.? Hes had an ultrasound, all of

the labs, and x rays. we are waiting on the results. In any case we were very

stunned by the news that he is almost at the point of a liver transplant. Can

someone tell me some of the symptoms, outcomes, prognosis (which i realize is

different in each case) will he be tired like this all the time. He is 54 years

old. It doesnt seem like anything can be done, except control the side effects,

like leg swelling and infection. any input would be appreciate. Thanks Bonnie

________________________________

To: livercirrhosissupport

Sent: Tue, August 24, 2010 9:53:54 PM

Subject: Re: need to vent

yes roller coater ride puts it mildly girl!!!!!

> > >

> > > > this will sound crazy so if you want to skip reading i wont mind. i am

> > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want

> > scan

> > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i

> > fed

> > > > him and skyler the grandson living with us, i found his empty glass of

> > in

> > > > the frige instesd of the sink today. he thought it was friday our

> > > > grandaughters birthday but its sunday, we went to her party he doesnt

> > > > remeber it. like i said i am pissed or call it scared what ever it is i

> > am

> > > > it. my newest grandbaby conts. to do good then bad....to be expected

> > for a

> > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out

> > ...hes

> > > > a boy and for some reason its different than the girls...hes in time

> > out

> > > > right now....am i to hard on him...or is he to stubborn i dont know.

> > the

> > > > tears rolling down my face says it all. i am tired but i have to cont.

> > on i

> > > > have no choice in any of this. if i had my choice i would be at the

> > ocean

> > > > watching the waves lap the shore...eating at cock of the walk with

> > elsie and

> > > > roger...but i have no choice. i am here i am mad i am confused i am

> > > > ....??????? really makes me want a glass of wine, but i live to far

> > from

> > > > town and its sunday and i cant get any lol. whys life so messed

> > up...what

> > > > did i do to deserve all this crap???? should i walk away and tell them

> > all

> > > > do it yourself??? should i just suck it up ,drink water and drive on

> > soldier

> > > > ???? i know this is my life, for whatever reason these are the cards

> > dealt

> > > > to me, and i will find away to stand. but right now i am pissy i am sad

> > i

> > > > miss my life the way it was. i am sorry but if i told anyone in my

> > family

> > > > the way i feel they would blame me for enabling everyone. you all and

> > > > elsie...aka mae mae are they only ones i have to vent to that dont

> > sugarcoat

> > > > the facts or blow smoke up my butt. i love you all and just needed to

> > get

> > > > this off my chest cause i have been one angry chick all week cause i

> > dont

> > > > know where these feelings are supposed to go. i am angry with the sick

> > ones

> > > > the stupid ones and the ones who just dont give a crap. i wanna lay in

> > the

> > > > sun with a glass of something...even water lol. in my hand soaking up

> > the

> > > > rays, without a care in the world....but life wont let me. who wouldnt

> > be

> > > > pissed. sorry if i have offended anyone...welcome to barbys world its

> > me

> > > > against all of them.... when will it be my turn? i know that sounds

> > selfish

> > > > but i feel selfish right now. whats god...the universe trying to tell

> > me?

> > > > well just spit it out already i will do what i need to but i am tired

> > for

> > > > crying out loud!!

> > > >

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

> > > >

> > > > Group Email: livercirrhosissupport

> > > > web address:

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

> > > >

August 27, 2010

Is this doc at a transplant center? if not, dont believe him. If he is, you

might want to ask why the AASLD recommendations are for 10 and over, and why

your loved one cant get on at 10? There is ample evidence that the earlier the

transplantation, the better the outcome. Love, Bobby

________________________________

To: livercirrhosissupport

Sent: Thu, August 26, 2010 5:54:04 PM

Subject: Re: need to vent

Mike, thanks for the info. He is not on transplant list yet. His MELD rate is

14, doc says 16 is when u get on the list. He is very tired, sleeping a lot. He

also has Hep C. He applied for ss. But he seems like he is just kinda giving

up. Laying around on the couch, then to the bed, I heard that if he has Hep C

the cirrohsis will progress quicker. Is that true. Im trying to get as much

info as possible, like what to expect and how long does this go on.? Thanks.

Bonnie

________________________________

To: livercirrhosissupport

Sent: Wed, August 25, 2010 10:41:46 PM

Subject: Re: need to vent

Bonnie,

He will remain tired and sleep most the time. He will if not already have major

mood swings, he might jerk and twitch when sleeping. He will be confused alot,

make sure he keeps up the lactuloce, this will keep him focused. He will be

taking a crud load of meds.,

Is he already on the transplant list? You need to stay strong stay in there with

him. After he recieves his transplant everything will return to normal or you

will see a new man. I had the transplant 4 years ago and I am doing very well.

If you have any questions what so ever please ask. Thats what we are here for.

Best of luck

Mike

Subject: Re: need to vent

To: livercirrhosissupport

Date: Wednesday, August 25, 2010, 8:00 PM