Jump to content
RemedySpot.com

Re: need to vent

Rate this topic


Guest guest

Recommended Posts

Hi Barby:  My heart breaks for you as I read your post.  Please don't feel

guilty about being angry.  I know exactly how you feel.  It's only been a few

short months since my husband had his transplant, and believe me.  He was

really sick before it.  Even tho we are on the other side of this I can

remember those bad days, and I cringe whenever I think of those memories.  The

only thing that got me thru it was knowing that things would one day get better

and that the bad times were temporary.  You have done a fine job of weathering

the storm so far.  Your sweet disposition and good sense of humor are an

inspiration to us all.  Hang in there, and know that others are praying for

you.  We are here for you whenever you need to vent.  Keep us all posted on

how things are going and what Bobby Glen's drs say.  Hope to hear from you

again soon.  Love ya, Jackie

Subject: need to vent

To: livercirrhosissupport

Date: Sunday, August 22, 2010, 5:09 PM

 

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!!

Link to comment
Share on other sites

Barbi, you are just being human. Diane our rock decided she needed a break.

The only reason I haven't been bawling for the last couple of weeks/months

to the point of having red eyesis that I don't have any tears. You know

what it is like, you have one, two, three things to handle, and if they come

on spread apart, you can handle them. You might have to change your life a

little bit. In the last couple of months, I have discovered that the doctor

I hd been trusting to do something about my anemia whasn't getting the job

done, and I was getting weaker and weaker.. When I gave the responsibility

to my neph, it took him about 2 weeks to get the treatment going. They had

never really given me a cause for the aanemia, just that it wasn't for lack

of iron. for some reason my body wasn;t making enough red blood cells.

Well, I got this great idea,, I have had blood showing on my feet since

last summer because my feet got to large from extra fluid and squeezed the

blood out of my veins. I also bruise a lot. I started thinking that maybe

I could be bleeding inside in a place where the blood wasn't getting into my

digestive track ( like all liver patients, have to check thecolor of bowl

movements and they were fine) So I made an appt with my gastro for an endo

and colonoscopy. Colon was fine, but an inflamation/infection of the

stomach was causing me to bleed between the lining and outer part of my

stomach. That made me feel very smart because I had been right. Before I

got the results though, I took a little flight withoout the benefit of a

plane and made a bad landing, first on my wrist, breaking it, then on my

knees, severely bruising one knee cap, and now that the cast is off and the

knee swelling as gone down, it is obvious that I also badly sprained ankle.

They told me not to start treatment for my stomach as it is really nasty

until my arm is taken care of, and the dr. told me I needed at least 4

weekss twice weekly 35 miles away from home. So the treatment will have to

wait until the end of Sept. The fall also seems to have set off my fibro

myalgia especiilly on the left side where the other injuriees are.

So, a few times I have sat here with my chest heaving and no tears because I

don't have any. I think I would feel a lot better if I could just open the

faucet in my eyes for a while. Look terrible,, but usually is relaxing.

And then, when I think that way I feel very guilty for not trusting God to

take care of it all in his way. He obviously isn't going to do it my way.

By the middle of Oct I should be feeling better, but that seems a long way

away right now. So go ahead and vent here, nobody else seems to want to

listen, those who should like family and friends. I would include all the

other things going on, but I had to do this in two sessions the way it is.

BTW I got my cute little cordless mouse working on my netbook, Those of you

who don't have a netbook should get one. Mine is a Dell Inspiron mini with

Windows 7 Jan H

com > wrote:

> 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/

>

Link to comment
Share on other sites

I tried to chat with you yesterday, but it dint work. I was going to say

something about how to pull up your big girl boots, and that crap, because just

like a lot of folks here, and a lot of peeps there, people LOVE you. People look

for your strength. I know its a big rock to carry, but you are strong and you

are a good person, and decent lady. Bobby wouldnt fair well at all without you.

You family wouldnt fair at all, cause you are the glue! I hope you dont get mad

at me for saying all this. I am only verbalizing everything you already know.

WE know you are just venting. If you go waaaaayy back on this forum you can find

my potty chair rant. I kind of lost it after Ardis died, and the subjsct of

substandard nursing care came up. But I was mortified anyway, cause I did post a

big ol rant.. Barby, I sure do appreciate your friend ship, and someday Sharon

and I are gonna show up down there in KAIN tuck. You jes wait an see. Love,

brother bob

Democracy is two wolves and a lamb voting on what to have for lunch. Liberty is

a well armed lamb contesting the vote. - lin

________________________________

To: livercirrhosissupport

Sent: Sun, August 22, 2010 3:09:00 PM

Subject: need to vent

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!!

Link to comment
Share on other sites

thank you jackie feeling much more in conntrol today, called dr. yesterday am,

thru a hissy and then took bobby glenn to medicial center and got an ultra sound

and labs done...will have results by friday they said. i want a cat scan thats

what vandy ordered yearly, riccio seems to think ultrasound is ok...but i am

going over his head this morning calling family dr. and having cat scan ordered.

hes my husband,not riccios project. hes acting alittle more sound minded today

and lastnite,even though he was up telling skyler it was bedtime at 3am, but the

poor kid was asleep in his room, i think he was dreaming i dont know. thanks for

the pep talk much love barby

>

>

>

> Subject: need to vent

> To: livercirrhosissupport

> Date: Sunday, August 22, 2010, 5:09 PM

>

>

>  

>

>

>

> 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!!

>

>

>

>

>

>

>

>

>

>

>

>

Link to comment
Share on other sites

thanks jan, and girl you sound like me with the wrist, i took a fall awhile

back...yup me feel right on the bathroom floor and hadnt even had anywine lol.

tripped over my own pajama leg. hairline fractured my wrist 2 places. well that

thing they had me in had to go sooner than it should have it was hampering my

abilities...esp. wiping my butt hahahaha, now i see how hard it was for bobby

glenn with 2 surgeries on his right hand, anyways it still hurts alittle

depending how i move it or what i do with it. but it seems to have mended fine.

sorry youve had such a rough go of it yourself lately, hers a tip they told me

when i was anemic cook in a cast iron frying pan. seems to help with iron

levels. hope you get up and feeling better soon, we all fall but what goes down

must come up.....kinda like our panties hahahahahaha much love barby

>

> > 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/

> >

Link to comment
Share on other sites

Hi Barby:  Glad to see you're doing better.  You know, sometimes you can find

humor in the worst situations, and I know you have a sense of humor, so here's a

little story I'll share with you.  During one of my husband's hospital stays

for elevated ammonia levels one of his friends came and visited.  This is a

friend of his thru the masonic lodge.  While they visited, two other friends

took me out to dinner, and I found out later that my husband and his friend were

talking about an article the friend read in a masonic magazine about former

astronaut Buzz Aldrin.  (he's a mason, you know)  That night I went home to

sleep and my husband called me in the middle of the night.  It sounded like he

was having a panic attack so I called the nurses desk and asked if they would

check on him.  They said he was ok but if I wanted to I could come and stay

with him.  I threw on some clothes and drove down to the hospital at 3am and

curled up in the recliner

beside his bed.  It took me 2 hours to get back to sleep.  I was asleep for

about an hour when I heard him calling me and telling me to wake up!  " You're

gonna miss it! "   He said, so I said " What? "   He answered, " The moon launch "

and I said " What moon launch?  Is there a moon launch on TV? " (the tv was

off)  and he said " No, me!  I'm Buzz Aldrin!  I'm goin to the moon! "   I was

so mad cause he woke me up & I told him to buzz off & go back to sleep!  We

still laugh about it to this day.  We had a chair lift installed in the house

so he doesn't have to use the steps when he's too tired.  Whenever he gets in

his chair lift I go " Houston.  We have lift off! "   LOL.  Hope you got a kick

out of that story.  Jackie

Subject: Re: need to vent

To: livercirrhosissupport

Date: Tuesday, August 24, 2010, 9:54 AM

 

thank you jackie feeling much more in conntrol today, called dr. yesterday am,

thru a hissy and then took bobby glenn to medicial center and got an ultra sound

and labs done...will have results by friday they said. i want a cat scan thats

what vandy ordered yearly, riccio seems to think ultrasound is ok...but i am

going over his head this morning calling family dr. and having cat scan ordered.

hes my husband,not riccios project. hes acting alittle more sound minded today

and lastnite,even though he was up telling skyler it was bedtime at 3am, but the

poor kid was asleep in his room, i think he was dreaming i dont know. thanks for

the pep talk much love barby

>

>

>

> Subject: need to vent

> To: livercirrhosissupport

> Date: Sunday, August 22, 2010, 5:09 PM

>

>

>  

>

>

>

> 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!!

>

>

>

>

>

>

>

>

>

>

>

>

Link to comment
Share on other sites

thanks bobby you didnt offend me ,i know what you say is the truth!! and its not

big girl BOOTS its big girl PANTIES lol and trust me i have them pulled up so

high today i look like i could rob a bank in my thongs hahahahahaha. remember

that song " the b**** is back ? " well she is teehee. i have great friends who

love me a wonderful family even when they expect to much from me. i know they

love me and a husband who i couldnt imagine my life without. so yes i am good

again ,till the next time :) i thank god for all of you ...you to mae-mae ,live

would be so much harder without knowing i have ya all to lean on. you and sharon

come right on ,oh what grand fun that would be :) love you my brother from a

different mother !!!!!!

>

> I tried to chat with you yesterday, but it dint work. I was going to say

> something about how to pull up your big girl boots, and that crap, because

just

> like a lot of folks here, and a lot of peeps there, people LOVE you. People

look

> for your strength. I know its a big rock to carry, but you are strong and you

> are a good person, and decent lady. Bobby wouldnt fair well at all without

you.

> You family wouldnt fair at all, cause you are the glue! I hope you dont get

mad

> at me for saying all this. I am only verbalizing everything you already know.

> WE know you are just venting. If you go waaaaayy back on this forum you can

find

> my potty chair rant. I kind of lost it after Ardis died, and the subjsct of

> substandard nursing care came up. But I was mortified anyway, cause I did post

a

> big ol rant.. Barby, I sure do appreciate your friend ship, and someday Sharon

> and I are gonna show up down there in KAIN tuck. You jes wait an see. Love,

> brother bob

>

> Democracy is two wolves and a lamb voting on what to have for lunch. Liberty

is

> a well armed lamb contesting the vote. - lin

>

>

>

>

> ________________________________

>

> To: livercirrhosissupport

> Sent: Sun, August 22, 2010 3:09:00 PM

> Subject: need to vent

>

>

> 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!!

>

>

>

>

>

>

>

>

>

Link to comment
Share on other sites

hahahahaha to cute girl, i love the chair and lift off. oh speaking of moons,

friday nite well at midnight,for those of us who cant sleep :) there will be 2

moons visaible in the sky, one its actually gonna be mars i think i read, they

say anyone alive today should watch for it cause we will never see it again if

we are here now. thought i would throw that out there for any of you sky

watchers. i am hoping to get some good pictures of it for my grandkids when they

are older. i wonder if vidio taping will pick it up . ok toots thanks for the

laugh love you barby

> >

> >

> > From: barby <pinkmeetsblue@>

> > Subject: need to vent

> > To: livercirrhosissupport

> > Date: Sunday, August 22, 2010, 5:09 PM

> >

> >

> >  

> >

> >

> >

> > 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!!

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

Link to comment
Share on other sites

Barby, the funny thing about the fall is that I was wearing flats when I

took off on my little flight. People have been telling me for years to quit

wearing my spikes or I WOULD fall snd break something. As too the cast iron

pans, my iron level is fine, not causing the anemia.Trying to hook my bras

is still hard since I have to watch the stress on my wrist Yup, hard to

wipe the butt with splint or cast, and not easy to wash one hand

either. That i probably why 2 doctors told me to wait until I AM DONE with

my arm before starting the trewtmnt for my stomach. i have bought medicine

for diarrhea and also a bunch of package of large wipes. Glad you are

feeling better today, it sure is a roller coaster ride isn't it. jAN h

> thanks jan, and girl you sound like me with the wrist, i took a fall awhile

> back...yup me feel right on the bathroom floor and hadnt even had anywine

> lol. tripped over my own pajama leg. hairline fractured my wrist 2 places.

> well that thing they had me in had to go sooner than it should have it was

> hampering my abilities...esp. wiping my butt hahahaha, now i see how hard it

> was for bobby glenn with 2 surgeries on his right hand, anyways it still

> alittle depending how i move it or what i do with it. but it seems to have

> mended fine. sorry youve had such a rough go of it yourself lately, hers a

> tip they told me when i was anemic cook in a cast iron frying pan. seems to

> help with iron levels. hope you get up and feeling better soon, we all fall

> but what goes down must come up.....kinda like our panties hahahahahaha much

> love barby

>

>

> >

> > > 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/

> > >

Link to comment
Share on other sites

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/

> > > >

Link to comment
Share on other sites

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/

> > > >

Link to comment
Share on other sites

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/

> > > >

Link to comment
Share on other sites

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

 

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/

> > > >

Link to comment
Share on other sites

hi bonnie, my name is barby, my husband also has hep c and esld. we are also

awaiting his new labs. yes he stays tired and swollen to, applying for

disability isnt fun but i hope the speed his up as well as all of us who are

still waiting for it. my husband couldnt take the hep c shots,put now we have

people here who got their new livers took the shots and have great lives so i

will let them tell you their stories...as for ours we are still waiting also.

best of luck and you both will be in my prayers. much love barby

> > > >

> > > > > 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/

> > > > >

Link to comment
Share on other sites

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/

> > > >

Link to comment
Share on other sites

feed the liver 5 small meals(snacks) verylittle  if any sodium,stay away from

easy on the shelf meals,and soups,they are full of sodium.eat lots of fruit.

green tea is a must,only let him consume a 2 liter of liquid aday,for swelling.

 Tonnia L. Whitney  aka {Tommie Girl "

________________________________

To: livercirrhosissupport

Sent: Wed, August 25, 2010 9:00:33 PM

Subject: Re: need to vent

 

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/

> > > >

Link to comment
Share on other sites

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

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/

> > > >

Link to comment
Share on other sites

Hi Bonnie:  It's my understanding that a hospital cannot refuse you treatment,

even if you have no insurance.  I hope you have an opportunity to explain to

your primary care physician about what happened when you went to the ER.  Is

there another hospital close by that you can go to?  Where is your nearest

transplant hospital?  You might be able to find that out by looking it up on

the internet by searching " liver transplant. "   Maybe even your primary care dr

knows where the nearest transplant center is.  He could probably give you a

referral to get an evaluation for transplant.  That's where you would start. 

I'm not sure what the criteria are for hep c, as my husband tested negative for

all the hep c viruses.  When my husband had open heart surgery in 2004 I

remember asking the dr if his insurance would cover it and the dr told me that

they don't worry about that.  The physician's job is to treat the patient and

not concern himself with the

billing.  The drs are in business to save lives.  I would pursue this

aggressively if I were you.  Stand firm and don't take no for an answer. 

Please keep me posted.  I am very concerned for you and your husband.  Hope I

have been of some help.  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/

> > > >

Link to comment
Share on other sites

Bonnie,

I had Hep C and and my score was a 13 and i was put on the list. My score was a

19 when I got my transplat. It took 9 months before I got my transplant and

believe me I know I would not have lasted another week. I know its gonna be

hard  and I had awesome support from my wife. She made my interact with the

family and made me get out and do things regardless what I did or said. But I

was lucky I didnt have the ammonia and any of the other sicknesses. I did what

the doctors told me to do, but I also went by my on body instincts. I ate what i

wanted but no salt. I drank nothing but water and cranberry juice. I guess what

i am saying is that there is gonna me alot of changes through this but keep it

as normal as possible. Have both of you gone to the pre and post transplant

classes. It was required before you got on the list. It is very helpful and

there are people like myself that goes to these meetings that are there to try

to help peolpe cope and

understand what to expect before and after the transplant.

Subject: Re: need to vent

To: livercirrhosissupport

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

> > > >

Link to comment
Share on other sites

Mike, I didnt know that you could even get on the list with a MELD of 14, and

did you have good insurance? were u tired a lot? thanks for the info. how did

you feel when you were at a score of 13? was it like I described. He's so

sleepy all day. Thanks for the encouragement. Bonnie

________________________________

To: livercirrhosissupport

Sent: Thu, August 26, 2010 9:32:58 PM

Subject: Re: need to vent

Bonnie,

I had Hep C and and my score was a 13 and i was put on the list. My score was a

19 when I got my transplat. It took 9 months before I got my transplant and

believe me I know I would not have lasted another week. I know its gonna be

hard and I had awesome support from my wife. She made my interact with the

family and made me get out and do things regardless what I did or said. But I

was lucky I didnt have the ammonia and any of the other sicknesses. I did what

the doctors told me to do, but I also went by my on body instincts. I ate what i

wanted but no salt. I drank nothing but water and cranberry juice. I guess what

i am saying is that there is gonna me alot of changes through this but keep it

as normal as possible. Have both of you gone to the pre and post transplant

classes. It was required before you got on the list. It is very helpful and

there are people like myself that goes to these meetings that are there to try

to help peolpe cope and

understand what to expect before and after the transplant.

Subject: Re: need to vent

To: livercirrhosissupport

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

> > > >

Link to comment
Share on other sites

Jackie Hi, I brought my husband on August 4th, and I am still so hopping mad

that I am just now calm enough to write a letter to the Director of our

experience. Mike on this forum offered some pointers surrounding the Hep C. I

didnt realize that you could get on a transplant list at a MELD of 14. However,

with insurance from social security, if he is found eligible, will that pay?

How many years does it take before he gets so sick that he will need to go to

hospice, or does each person develop differently, and what will I notice. I

dont dare ask the doctor in front of my husband, as I dont want him to feel bad.

This would be the place to ask I guess, seeing as you all have been through it

and can give me some good insight. Thanks again. Bonnie

________________________________

To: livercirrhosissupport

Sent: Thu, August 26, 2010 8:25:28 PM

Subject: Re: need to vent

Hi Bonnie: It's my understanding that a hospital cannot refuse you treatment,

even if you have no insurance. I hope you have an opportunity to explain to

your primary care physician about what happened when you went to the ER. Is

there another hospital close by that you can go to? Where is your nearest

transplant hospital? You might be able to find that out by looking it up on the

internet by searching " liver transplant. " Maybe even your primary care dr knows

where the nearest transplant center is. He could probably give you a referral

to get an evaluation for transplant. That's where you would start. I'm not

sure what the criteria are for hep c, as my husband tested negative for all the

hep c viruses. When my husband had open heart surgery in 2004 I remember asking

the dr if his insurance would cover it and the dr told me that they don't worry

about that. The physician's job is to treat the patient and not concern himself

with the

billing. The drs are in business to save lives. I would pursue this

aggressively if I were you. Stand firm and don't take no for an answer. Please

keep me posted. I am very concerned for you and your husband. Hope I have been

of some help. 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/

> > > >

Link to comment
Share on other sites

Hi

 

I have ESLD and was diagnosed in 2008.  I was in Florida and my children moved

me back to Texas with a high meld score in the 18 to 20 range.  It took me

around 4 months to be listed on the transplant list for liver and kidney.  I

have since rested alot and have taken all the medication that the liver

institute.  (I don't care for the Kristolose but love to take it for it does

help with my confusion.  I have recently had a meld score of 10 and am doing

okay.  I stay tired all the time, but have learned to pace myself and tell

others that I am tired.

 

I hope my story helps....please ask any questions that you want to ask.  This

is a fantastic group.

Thank you God for this day and for my tomorrows .

 

Love, Lyncia 

 

 

Subject: Re: need to vent

To: livercirrhosissupport

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

> > > >

Link to comment
Share on other sites

hi bonnie,

i know that in texas once you start getting ss disability you have to wait for

two yrs to apply for medicare disability.but i agree with jackie the hosp should

not refuse treatment with no insurance.i would call the hosp. directors here in

tx they take you and get you stable and then transfer you to one of the county

hosp. and you then apply for what they call gold card for medical

treatment.thats what we had to do for my 23 yr old son when he gat a gunshot

wound about a year ago.and they paid for everything. its a hassle but worth it.

god bless and good luck.

bev, tx

________________________________

To: livercirrhosissupport

Sent: Thu, August 26, 2010 11:35:12 PM

Subject: Re: need to vent

Jackie Hi, I brought my husband on August 4th, and I am still so hopping mad

that I am just now calm enough to write a letter to the Director of our

experience. Mike on this forum offered some pointers surrounding the Hep C. I

didnt realize that you could get on a transplant list at a MELD of 14. However,

with insurance from social security, if he is found eligible, will that pay?

How many years does it take before he gets so sick that he will need to go to

hospice, or does each person develop differently, and what will I notice. I

dont dare ask the doctor in front of my husband, as I dont want him to feel bad.

This would be the place to ask I guess, seeing as you all have been through it

and can give me some good insight. Thanks again. Bonnie

________________________________

To: livercirrhosissupport

Sent: Thu, August 26, 2010 8:25:28 PM

Subject: Re: need to vent

Hi Bonnie: It's my understanding that a hospital cannot refuse you treatment,

even if you have no insurance. I hope you have an opportunity to explain to

your primary care physician about what happened when you went to the ER. Is

there another hospital close by that you can go to? Where is your nearest

transplant hospital? You might be able to find that out by looking it up on the

internet by searching " liver transplant. " Maybe even your primary care dr knows

where the nearest transplant center is. He could probably give you a referral

to get an evaluation for transplant. That's where you would start. I'm not

sure what the criteria are for hep c, as my husband tested negative for all the

hep c viruses. When my husband had open heart surgery in 2004 I remember asking

the dr if his insurance would cover it and the dr told me that they don't worry

about that. The physician's job is to treat the patient and not concern himself

with the

billing. The drs are in business to save lives. I would pursue this

aggressively if I were you. Stand firm and don't take no for an answer. Please

keep me posted. I am very concerned for you and your husband. Hope I have been

of some help. 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/

> > > >

Link to comment
Share on other sites

lyncia have you received your transplant yet i have been on the list since dec

2009 with a meld ranging from 19 to 21 i had one has high as 23 then it went

down some.where in tx are your drs.

bev,tx

________________________________

To: livercirrhosissupport

Sent: Thu, August 26, 2010 11:44:37 PM

Subject: Re: need to vent

Hi

I have ESLD and was diagnosed in 2008. I was in Florida and my children moved

me back to Texas with a high meld score in the 18 to 20 range. It took me

around 4 months to be listed on the transplant list for liver and kidney. I

have since rested alot and have taken all the medication that the liver

institute. (I don't care for the Kristolose but love to take it for it does

help with my confusion. I have recently had a meld score of 10 and am doing

okay. I stay tired all the time, but have learned to pace myself and tell

others that I am tired.

I hope my story helps....please ask any questions that you want to ask. This is

a fantastic group.

Thank you God for this day and for my tomorrows .

Love, Lyncia

Subject: Re: need to vent

To: livercirrhosissupport

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

> > > >

Link to comment
Share on other sites

No transplant yet.  I have been on the transplant list since 7/2008.  My meld

score has been very stable this past year. 

Thank you God for this day and for my tomorrows .

 

Love, Lyncia 

 

 

Subject: Re: need to vent

To: livercirrhosissupport

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

> > > >

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...