Questions

[Guest guest]

I was diagnosed two years ago with NASH then, sort of accidently, they

discovered I had fourth stage cirrhosis. I feel like I'm falling apart. I

can't stop crying and life, in general, sucks. It has also caused a severe

crisis of faith, which I've never before experienced. This is unusual for me,

as I am usually a happy, " God " kind of gal.

Statistics tell me that I have 80% of dying in the next three years. I am SO

not ready for that.

Any suggestions on how to handle this mess?

Kate

[Guest guest]

Hi Kate:  I'm Jackie.  Wish I could give you a big hug right now.  The best I

can do is one of these:  (((Kate)))  My husband, was also diagnosed with

NASH.  He's diabetic and had fatty liver, which led to cirrhosis, which led to

3 cancerous tumors in the right lobe of his liver.  I am about to become your

new best friend, if you will allow.  Stay with me while I tell you of our

journey.  In January of 2009 he had an ultrasound of his liver, which led to

an MRI and the discovery of the tumors.  In February of 2009 he had a biopsy. 

We waited a week and went to the dr for the results.  The dr said his tumor

marker test looked normal and the biopsy result was inconclusive.  He said

they had sent the biopsy to another center for a 2nd look but everything would

probably come out ok.  We left there happy, and I drove to see my husband's

aunt to tell her the " good news. " I didn't want to explain over the phone, as

she is hard of hearing,

and it was a beautiful day for a drive.  When I got there I called my husband

to tell him that I had arrived safely and he told me he just got off the phone

with the dr.  The 2nd look at the biopsy showed cancer.  It was like a cruel

joke.  I drove home frantically and went over to church to see our pastor.  He

came to the house and sat down with us and told us that we had to stand shoulder

to shoulder thru this crisis and not hide our feelings from each other.  When

was weak, I would be strong, and vice- versa.  Do you have family who you

are close with?  Maybe even some close friends?  Don't hide--reach out and

tell people when you are scared, just like you did here.  We are here to help

and encourage you.  We had a long and perilous journey with this disease, but a

happy ending.  received a liver transplant on May 26, 2010 and has a 2nd

chance at life.  We never gave up hope, and my message to you is to not give up

hope

either.  I am writing a book about our experience.  It will be called " The

Mustard Seed " .  If you have faith as tiny as a mustard seed you can move a

mountain.  We did.  Stay with this group and you will learn much.  Share what

you learn with your loved ones who will be able to help you in your fight

against this disease.  We can help you to navigate the medical community since

many of us have experience with what we have gone/are going thru.  Hope I have

given you some encouragement today.  You can email me at jckellermann@...

and I will give you my phone number if you would like to talk personally. 

Keeping you in prayer.  Jackie 

Subject: Questions

To: livercirrhosissupport

Date: Saturday, March 5, 2011, 4:34 AM

 

I was diagnosed two years ago with NASH then, sort of accidently, they

discovered I had fourth stage cirrhosis. I feel like I'm falling apart. I can't

stop crying and life, in general, sucks. It has also caused a severe crisis of

faith, which I've never before experienced. This is unusual for me, as I am

usually a happy, " God " kind of gal.

Statistics tell me that I have 80% of dying in the next three years. I am SO not

ready for that.

Any suggestions on how to handle this mess?

Kate

[Guest guest]

Kate, I would like to know what " statistics " you have seen that tell you this?

Usually statistics for liver disease patients are median survival type. In other

words, the disease is so unpredictable that the experts say things like 50%

three year median survival, which means 50% percent die before three years and

the other 50% do not, and then another statistic has to be used for this who

survive past the three year mark. I would be very very Leary about believeing

statistics, because the true ones always give you the possibility of surviving,

thready reflecting reality. Love, Bobby PS,

sometime I get in a panic over the very same thing. Please get ahold of me on

Yahoo chat.

________________________________

To: livercirrhosissupport

Sent: Sat, March 5, 2011 2:34:35 AM

Subject: Questions

I was diagnosed two years ago with NASH then, sort of accidently, they

discovered I had fourth stage cirrhosis. I feel like I'm falling apart. I

can't stop crying and life, in general, sucks. It has also caused a severe

crisis of faith, which I've never before experienced. This is unusual for me,

as I am usually a happy, " God " kind of gal.

Statistics tell me that I have 80% of dying in the next three years. I am SO

not ready for that.

Any suggestions on how to handle this mess?

Kate

[Guest guest]

 Kate,my husband was diagnosed with end stage liver failure due to NASH 5 1/2 

years ago. He's had many many esoughogeal varice  bandings and other

complications from the disease. However he does have compensated sustained liver

function. His hepotologist says he's doing well and we are now down to just 2

visits a year with him. Chin up girl.. I too thought it was a death sentence

when we first were told.We too talked about his impending death  and I cried so

much in the beginning. This forum was and is a life saver for me. I found there

is life after diagnosis! Talk with us here. There's tons of information here and

even more support for you! We're family...and you will feel our love!

 

                                       

                                    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.

________________________________

To: livercirrhosissupport

Sent: Sat, March 5, 2011 9:05:55 PM

Subject: Re: Questions

 

Kate, I would like to know what " statistics " you have seen that tell you this?

Usually statistics for liver disease patients are median survival type. In other

words, the disease is so unpredictable that the experts say things like 50%

three year median survival, which means 50% percent die before three years and

the other 50% do not, and then another statistic has to be used for this who

survive past the three year mark. I would be very very Leary about believeing

statistics, because the true ones always give you the possibility of surviving,

thready reflecting reality. Love, Bobby PS,

sometime I get in a panic over the very same thing. Please get ahold of me on

Yahoo chat.

________________________________

To: livercirrhosissupport

Sent: Sat, March 5, 2011 2:34:35 AM

Subject: Questions

I was diagnosed two years ago with NASH then, sort of accidently, they

discovered I had fourth stage cirrhosis. I feel like I'm falling apart. I

can't stop crying and life, in general, sucks. It has also caused a severe

crisis of faith, which I've never before experienced. This is unusual for me,

as I am usually a happy, " God " kind of gal.

Statistics tell me that I have 80% of dying in the next three years. I am SO

not ready for that.

Any suggestions on how to handle this mess?

Kate

[Guest guest]

Hi:  I'm Jackie.  My husband had a liver transplant May 26th 2010.  I can

identify with all of the things you are describing.  The bloated belly is

called ascites and they do a procedure called paracentesis where they drain the

fluid off the belly.  The slow movements and far away look you describe sounds

to me like hepatic encephalopathy, otherwise referred to as elevated ammonia. 

For this they usually prescribe lactulose, a syrupy liquid which my husband and

I jokingly referred to as " go-jo. "   (when he takes it, you'll know why)  It

would be wise to take him to the e.r. as soon as you can.  The elevated ammonia

needs prompt attention, and so does the ascites.  Please stay in touch with

this group.  Our " family " here can keep you well informed and provide love,

support and comfort.  Please let us know how things are going.  Jackie

From: f_fwb <no_reply >

To: livercirrhosissupport

Sent: Saturday, August 13, 2011 12:40 AM

Subject: Questions

 

Hello to all. I have questions I can't find answers to by reading about

cirrhosis on the Internet. My active, self-employed 72 yr old husband was

diagnosed just over a year ago, but was not told to come back for regular

checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing

to give us the time to ask. We have an appointment with a liver specialist on

Aug 22, but I am concerned my husband will get worse before then, if I don't get

answers to something I may need to know before then.

He has appeared to have no symptoms, until recently when I noticed he seemed to

pay more attention to something in the room than his dinner plate. He started

tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to

2-3 per week. The part that started my worrying me was his feet started swelling

about a month ago, then I realized his stomach had been gradually swelling for

longer than that, and we just thought he was gaining weight. Now, he has no

naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he

started walking and talking as if in slow motion, and he has a different look in

his eyes. He has trouble focusing even with his glasses, but the look in his

eyes is one I can't describe, it is as if he is drugged. He had not changed or

added medication up to this point.

Is any of this familar? Is it normal?

That far-a-way look in his eyes concerns me that I should consider not waiting

until the 22nd, but seek medical attention by taking him to an ER if he gets

worse. The primary doctor did not give his eyes any attention when I pointed

this out to him this past Monday. He was seeing the doctor for what was

diagnosed as bursitis of the elbow, it was drained, and had no infection. He had

not injured his elbow, so could it be related to the other swellings?

Thank you for any advice, we have basically lived a normal life in the year

since he was diagnosed, and were not prepared for this sudden turn of events.

Fran

[Guest guest]

hi, fran i am beverly,i was diagnosed almost 3yrs it will be in oct.it seems

like you regular dr should have sent him to the liver dr. when he was

diagnosed.i am als on the go-jo syrup.and i take 2 xifan aday for my zumbieness

it helps to.they have not had to drain my belly yet but it sure looks like it

needs it.but i take alot of dieurtics for the fluid.i am with jackie if i hadn't

found this group i think i would have lost it.this disease is so unpredictable

one day i am ok the next i am not.i have been in the & out of the hospital about

15 times in less then 3 yrs.if not for this group and learning from others i

would be lost.take care and keep in touch even if it is just to vent

frustrations.

 

god bless

bev,tx

To: " livercirrhosissupport "

<livercirrhosissupport >

Sent: Friday, August 12, 2011 10:10 PM

Subject: Re: Questions

 

Hi:  I'm Jackie.  My husband had a liver transplant May 26th 2010.  I can

identify with all of the things you are describing.  The bloated belly is

called ascites and they do a procedure called paracentesis where they drain the

fluid off the belly.  The slow movements and far away look you describe sounds

to me like hepatic encephalopathy, otherwise referred to as elevated ammonia. 

For this they usually prescribe lactulose, a syrupy liquid which my husband and

I jokingly referred to as " go-jo. "   (when he takes it, you'll know why)  It

would be wise to take him to the e.r. as soon as you can.  The elevated ammonia

needs prompt attention, and so does the ascites.  Please stay in touch with

this group.  Our " family " here can keep you well informed and provide love,

support and comfort.  Please let us know how things are going.  Jackie

From: f_fwb <no_reply >

To: livercirrhosissupport

Sent: Saturday, August 13, 2011 12:40 AM

Subject: Questions

 

Hello to all. I have questions I can't find answers to by reading about

cirrhosis on the Internet. My active, self-employed 72 yr old husband was

diagnosed just over a year ago, but was not told to come back for regular

checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing

to give us the time to ask. We have an appointment with a liver specialist on

Aug 22, but I am concerned my husband will get worse before then, if I don't get

answers to something I may need to know before then.

He has appeared to have no symptoms, until recently when I noticed he seemed to

pay more attention to something in the room than his dinner plate. He started

tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to

2-3 per week. The part that started my worrying me was his feet started swelling

about a month ago, then I realized his stomach had been gradually swelling for

longer than that, and we just thought he was gaining weight. Now, he has no

naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he

started walking and talking as if in slow motion, and he has a different look in

his eyes. He has trouble focusing even with his glasses, but the look in his

eyes is one I can't describe, it is as if he is drugged. He had not changed or

added medication up to this point.

Is any of this familar? Is it normal?

That far-a-way look in his eyes concerns me that I should consider not waiting

until the 22nd, but seek medical attention by taking him to an ER if he gets

worse. The primary doctor did not give his eyes any attention when I pointed

this out to him this past Monday. He was seeing the doctor for what was

diagnosed as bursitis of the elbow, it was drained, and had no infection. He had

not injured his elbow, so could it be related to the other swellings?

Thank you for any advice, we have basically lived a normal life in the year

since he was diagnosed, and were not prepared for this sudden turn of events.

Fran