Re: Looking For Support

[Guest guest]

As I read your post, my heart breaks for you.  I am by no means your age and I'm

not the one with liver disease, it is my husband.  I can't empathize with you,

but I can sympathize and I can offer you a place to vent your fear and

frustrations.  I cannot feel what you're feeling, but I can feel for you.  I

cannot tell you how much it hurts me to know that you, so young and just

starting your life, are so sick and have so much to deal with at such an early

age.  I am here, I have an open ear, a soft shoulder and compassionate heart.  I

am praying for you and asking the Lord to give you understanding, hope and

healing.  Post anytime, we're always here and we're always ready to listen and

help if we can.  I have found so much help and support from the people in this

group.  I know you will too.

Love and hugs.....

Diane C. from TN

________________________________

To: livercirrhosissupport

Sent: Tuesday, November 18, 2008 11:21:11 PM

Subject: Looking For Support

This is my first support group so I'm not familiar with how things go,

but I know support will help me through this. I am 22 years old. I

have 15 health probs. I was born with Hep C. I'm in stage 4/4

cirrhosis, have a shunt my body formed from the portal hypertension

b/w the spleen and liver. I have hypersplenism, pancytopenia, anemia,

thrombocytopenia, leukopenia, coagulopathy, distended gall bladder,

hypothyroid, lymphocitic colitis, ibs, and two tumors on my liver that

aren't cancer at this time. I am overwhelmed, this news regarding my

health was all told to me over the last 6 months. I did treatment

(peg-interferon/ ribaviron) and after 3 months my viral load doubled. I

can't have the tumors removed b/c of the cirrhosis and I cant try

infergen b/c of the cirrhosis. The doctors guarantee I will need a

transplant but my MELD score is only 10 right now so the transplant

could be in one yr or 15 yrs...only God knows. I am scared. I want to

find someone my age who can relate, I am jealous of 40 yr olds who are

only beginning to enter liver damage when my damage is already so far

advanced. A nurse asked me why am i so sick and my answer was " b/c i

was born " . Can anyone out there feel my heart in this time of

uncertainty? I feel alone.

[Guest guest]

HI, crazy girl. I am Bobby, a 45 year old with end stage liver disease from

alcoholism. I am one of the three moderators here in this group. I have tried

other liver cirrhosis support groups, and let me tell you, there aint a better

one out there. The others were so depressing that I couldn't stay around. All of

the members were wives or husbands of encephalopathic, severly decompensated

people and it was not encouraging. Around that same time, we got some new

members here and fast forward a couple of years, and the member list is over 400

and the people here are the BEST. We have lost a dear friend just recently, but

another one just received a liver transplant in Sunday. There are some people

your age, and there are other hepC -ers too. You do have quite a list, but when

your liver transplant time comes, I hope you will have found this group like I

have to be like a second family. A second family who gets it. We have a files

section, we have a photo album,and links. There are a bunck of good pdf's and

powerpoints to watch. We avoid discussions about religion and politics, and

there is a no soliciting rule as well as no flaming. We tend to get along real

well, and we are very informal, and at times we can't help ourselves and discuss

things that are kinda off topic. Nice to meet you. THanks for joining. Love,

Bobby.

http://billybobswildride.blogspot.com/

Sent via BlackBerry from T-Mobile

Looking For Support

This is my first support group so I'm not familiar with how things go,

but I know support will help me through this. I am 22 years old. I

have 15 health probs. I was born with Hep C. I'm in stage 4/4

cirrhosis, have a shunt my body formed from the portal hypertension

b/w the spleen and liver. I have hypersplenism, pancytopenia, anemia,

thrombocytopenia, leukopenia, coagulopathy, distended gall bladder,

hypothyroid, lymphocitic colitis, ibs, and two tumors on my liver that

aren't cancer at this time. I am overwhelmed, this news regarding my

health was all told to me over the last 6 months. I did treatment

(peg-interferon/ribaviron) and after 3 months my viral load doubled. I

can't have the tumors removed b/c of the cirrhosis and I cant try

infergen b/c of the cirrhosis. The doctors guarantee I will need a

transplant but my MELD score is only 10 right now so the transplant

could be in one yr or 15 yrs...only God knows. I am scared. I want to

find someone my age who can relate, I am jealous of 40 yr olds who are

only beginning to enter liver damage when my damage is already so far

advanced. A nurse asked me why am i so sick and my answer was " b/c i

was born " . Can anyone out there feel my heart in this time of

uncertainty? I feel alone.

[Guest guest]

 Hi Crazy girl. I'm Jill. My husband was diagnosed with stage 4 cirrohsis about

2 years ago due to non alcohloic steato hepatitis. He has portal hypertension,

bleeding varices, gastropathy.We have our ups and downs with his disease. You

won't be alone here. You're very welcome here. You'll get answers to your

questions, loads of support, we'll cry with you and laugh with you.....believe

me you wil find things to laugh about!  This is an awesome forum. You'll love it

here.

                                       

                                    Love,Jill

 

We don't remember days, we remember moments.

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

breath away.

Subject: Looking For Support

To: livercirrhosissupport

Date: Wednesday, November 19, 2008, 12:21 AM

This is my first support group so I'm not familiar with how things go,

but I know support will help me through this. I am 22 years old. I

have 15 health probs. I was born with Hep C. I'm in stage 4/4

cirrhosis, have a shunt my body formed from the portal hypertension

b/w the spleen and liver. I have hypersplenism, pancytopenia, anemia,

thrombocytopenia, leukopenia, coagulopathy, distended gall bladder,

hypothyroid, lymphocitic colitis, ibs, and two tumors on my liver that

aren't cancer at this time. I am overwhelmed, this news regarding my

health was all told to me over the last 6 months. I did treatment

(peg-interferon/ ribaviron) and after 3 months my viral load doubled. I

can't have the tumors removed b/c of the cirrhosis and I cant try

infergen b/c of the cirrhosis. The doctors guarantee I will need a

transplant but my MELD score is only 10 right now so the transplant

could be in one yr or 15 yrs...only God knows. I am scared. I want to

find someone my age who can relate, I am jealous of 40 yr olds who are

only beginning to enter liver damage when my damage is already so far

advanced. A nurse asked me why am i so sick and my answer was " b/c i

was born " . Can anyone out there feel my heart in this time of

uncertainty? I feel alone.

[Guest guest]

hey baby girl,i am so sorry you feel so alone and scared ,thankfully

you have found us:) 22 wow you have alot on your plate but you must

look at the future for the blessing and wonderment that it holds for

you,if you have to fake it till you believe it .i for one am glad you

was born, you dont know it yet but you will be a great teacher here

and through out your life,i want you to believe in you!! see you are

so young and us 40 yr olds lol,can learn alot from a spry little

chicky like you!whats your name babe,i cant call you crazy lol thats

my nik-name lol lol lol,welcome to our group we will all support you

in this journey, we will bring your spirits up ,make you laugh ,make

ya mad sometimes teehee, just hang in there with us, go look in the

mirror, look at you and see beyond your illnesses and tell yourself

you are a bright bold wonderfilled human being and you desire to be

treated and treat yourself with kindness and respect, love yourself

babe,because i love you already !!! YOU ARE NOT ALONE!!!!!! not

anymore ,much love hugs and prayers ,barby

>

> This is my first support group so I'm not familiar with how things

go,

> but I know support will help me through this. I am 22 years old. I

> have 15 health probs. I was born with Hep C. I'm in stage 4/4

> cirrhosis, have a shunt my body formed from the portal hypertension

> b/w the spleen and liver. I have hypersplenism, pancytopenia,

anemia,

> thrombocytopenia, leukopenia, coagulopathy, distended gall bladder,

> hypothyroid, lymphocitic colitis, ibs, and two tumors on my liver

that

> aren't cancer at this time. I am overwhelmed, this news regarding my

> health was all told to me over the last 6 months. I did treatment

> (peg-interferon/ribaviron) and after 3 months my viral load

doubled. I

> can't have the tumors removed b/c of the cirrhosis and I cant try

> infergen b/c of the cirrhosis. The doctors guarantee I will need a

> transplant but my MELD score is only 10 right now so the transplant

> could be in one yr or 15 yrs...only God knows. I am scared. I want

to

> find someone my age who can relate, I am jealous of 40 yr olds who

are

> only beginning to enter liver damage when my damage is already so

far

> advanced. A nurse asked me why am i so sick and my answer was " b/c

i

> was born " . Can anyone out there feel my heart in this time of

> uncertainty? I feel alone.

>

[Guest guest]

Hi crazygirl - I am certainly not your age, I am 65 and my oldest grandson

is 21. So, I can't relate to you as someone your age. But I can relate to

you as someone who has multiple medical conditions. I too have a number of

medical problems, decided to count them after reading your post. My medical

problems number about 18 to 20 depending on how I combine them.Some are the

same as yours Some of them are very minor though. My cirrhosis is also 4

out of 4. Luckily, I found out my problems over a longer period of time

than you did. And, some of them didn't really surprise me since they run in

my family. I was not aware of the liver problem in the family until I was

diagnosed. I can understand the nurse's statement about having the

problems because you were born. A doctor told me before I had my triple

heart bypass that I had bad genes. Part of it is that I am 100% Norwegian

and the gene pool keeps getting smaller and smaller among the smaller

nationalities. It is easier to accept these genes because they are also

connected to people I grew up around and loved. But, you were given a

double whammy when you were born with Hep C. Do you have family around to

support you? Even if you do, you will become a member of this group family,

a family which often can understand more than any blood family no matter how

much they try to understand.

You will find out that you definitely not alone. Everybody here is willing

to listen and will have suggestions from time to time. I am sending you a

big hug and one question/suggestion. Do you have all of your conditions

with their medications, your sensitivies to certain meds, what medical

procedures you have had, and you family history listed to give to your

doctors when you visit them? I was told to do so by an emergency room

doctor and it has been a big help. Usually when you go see a doctor they

give you a few seconds to tell them what is bothering you. If they don't

know your other problems, they can't treat you correctly. It is also good

when you see the nurse before you see the doctor. I certainly couldn't

remember all the meds and supplements I take everyday along with the

dosage. I just give the nurse my list and sometimes they just put it in my

file and othertimes they copy from it into their forms. Every time I

update it, I give them a new copy. Jan H

On Tue, Nov 18, 2008 at 10:21 PM, crazygirlmcc wrote:

> This is my first support group so I'm not familiar with how things go,

> but I know support will help me through this. I am 22 years old. I

> have 15 health probs. I was born with Hep C. I'm in stage 4/4

> cirrhosis, have a shunt my body formed from the portal hypertension

> b/w the spleen and liver. I have hypersplenism, pancytopenia, anemia,

> thrombocytopenia, leukopenia, coagulopathy, distended gall bladder,

> hypothyroid, lymphocitic colitis, ibs, and two tumors on my liver that

> aren't cancer at this time. I am overwhelmed, this news regarding my

> health was all told to me over the last 6 months. I did treatment

> (peg-interferon/ribaviron) and after 3 months my viral load doubled. I

> can't have the tumors removed b/c of the cirrhosis and I cant try

> infergen b/c of the cirrhosis. The doctors guarantee I will need a

> transplant but my MELD score is only 10 right now so the transplant

> could be in one yr or 15 yrs...only God knows. I am scared. I want to

> find someone my age who can relate, I am jealous of 40 yr olds who are

> only beginning to enter liver damage when my damage is already so far

> advanced. A nurse asked me why am i so sick and my answer was " b/c i

> was born " . Can anyone out there feel my heart in this time of

> uncertainty? I feel alone.

>

>

>

--

Jan H

[Guest guest]

Well, as far as the disease being in the family...my mother, her mom,

and her two brothers all died from liver failure. I got the Hep C from

my mom when i was born. I watched my mother go through a liver

transplant in 2000 then die in '06 while I was pregnant from liver

failure. I have two healthy brothers that live in Ohio with me and

some family in NY. My husband and daughter is where I draw my main

support, and of course God. And as for your suggestion, I am a patient

of the cleveland clinic so my medical record is all kept in one

document and they always keep good track of me, makes my life easier.

[Guest guest]

It is good that you have a support system. I hope you will find someone

your age to include in that system. I know it is nice to have someone you

can talk to who understands. At my age, I can accept my problems much

easier than I could have when my children where young. I really have to do

nothing except take care of my self right now, and just told my stepdaughter

that I was sorry, but I couldn't take responsibility for her grandson if he

and his father came here to visit. It is a matter of safety for him and for

me. I pray you continue to have the strength to take care of your

daughter. Has your daughter been tested for Hep C? I am sending a hug your

way. Jan H

On Wed, Nov 19, 2008 at 7:20 PM, crazygirlmcc wrote:

> Well, as far as the disease being in the family...my mother, her mom,

> and her two brothers all died from liver failure. I got the Hep C from

> my mom when i was born. I watched my mother go through a liver

> transplant in 2000 then die in '06 while I was pregnant from liver

> failure. I have two healthy brothers that live in Ohio with me and

> some family in NY. My husband and daughter is where I draw my main

> support, and of course God. And as for your suggestion, I am a patient

> of the cleveland clinic so my medical record is all kept in one

> document and they always keep good track of me, makes my life easier.

>

>

>

--

Jan H

[Guest guest]

CrazyGirl~ Im a little closer to your age. I'll be 28 next month,

but its my husband that cirrhosis and he just turned 32. We have 3

kids together 8,3, and 1. If you ever need someone to talk to about

anything feel free to email me off list.

Take care,

Y

>

> > Well, as far as the disease being in the family...my mother,

her mom,

> > and her two brothers all died from liver failure. I got the Hep

C from

> > my mom when i was born. I watched my mother go through a liver

> > transplant in 2000 then die in '06 while I was pregnant from

liver

> > failure. I have two healthy brothers that live in Ohio with me

and

> > some family in NY. My husband and daughter is where I draw my

main

> > support, and of course God. And as for your suggestion, I am a

patient

> > of the cleveland clinic so my medical record is all kept in one

> > document and they always keep good track of me, makes my life

easier.

> >

> >

> >

>

>

>

> --

> Jan H

>

>

>

[Guest guest]

Hi. I went to the Cleveland Clinic, for a transplant, and I really liked their

care. I like my liver Dr. O'Shea is his name. Very good hospital They have

everything run so smooth.

Subject: Re: Looking For Support

To: livercirrhosissupport

Date: Wednesday, November 19, 2008, 9:20 PM

Well, as far as the disease being in the family...my mother, her mom,

and her two brothers all died from liver failure. I got the Hep C from

my mom when i was born. I watched my mother go through a liver

transplant in 2000 then die in '06 while I was pregnant from liver

failure. I have two healthy brothers that live in Ohio with me and

some family in NY. My husband and daughter is where I draw my main

support, and of course God. And as for your suggestion, I am a patient

of the cleveland clinic so my medical record is all kept in one

document and they always keep good track of me, makes my life easier.