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what is it like to die from Hep C?

My sister is in stage 4 cirrhosis, decompensted. She has had Hep C since she was 20 yrs old and is now 62. Her doctors have said they will try to give her 6 months. She also has lukemia. She will not be put on a transplant list because other organs are having problems. She asked me what I thought would happen, ie, pain, loss of cognition, what I have seen is  assorted, very sad, but assorted. Anyone have significant experience?
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Avatar universal
My mama have hep c she haven't eat anything since Jan she went threw chemo had a tube place so she can eat now she have so much fluid on her legs in stomach in her lungs in outside her lungs is there any life left can she survive this my dad not telling us nothing
Helpful - 1
683231 tn?1467323017
Hi Millie

This is an old thread and Hector's post you read is from Feb 03, 2013 or 9 months before his transplant.

Thankfully, looking at his profile he seems to be fine he posted just yesterday. Not sure why you had a problem sending him a message.

http://www.medhelp.org/personal_pages/user/446474

Helpful - 0
1930700 tn?1327064904
Hector: There are so many great people on this site.  But, by far - you are so special.  I was alarmed from your post that you stated you may be facing your own death.  I don't know if that was general statement...as all of us will face death at some point.

I know you had your transplant.  I just hope you survive this....your so needed on this site....your insight and advice is - so amazing...really, there are a million adjectives that describe what an awesome person you are.

Thank you.  Sorry, tried to send personal message - but it says its locked.
Milliehepc
Helpful - 0
Avatar universal
I watched my mom die of Hep C almost a year ago and it was the most painful thing that I have ever experienced. The doctors said that she contracted it 20 years ago from a blood transfusion. By the time that her symptoms represented she was already in liver failure. No parent wants to bury a child and neither did I want to bury my 51 year old mother. After her being in the hospital for 2 1/2 weeks the doctors told me that there was nothing more that they could do for her and from that point on I just did what I could to make her comfortable.She even told me that if she didn't make it back home that she would be ok. She was trying to be a comfort to me and she was the one dying. That was my best friend and her death was and still is painful. My prayers are with you all.
Helpful - 0
10175413 tn?1427170251
You have always given me support when I had so many questions and was panicking. I had no idea as I stumbled across this post as well. Geez Hector I wish I could wave a magic wand and take it all away. God bless you
Helpful - 0
163305 tn?1333668571
I almost died from the cirrhosis caused by hep C. My surgeon said I was only weeks from death's door. At the time, I felt like I was slipping away, sleeping more and more and losing energy. There wasn't much pain.
However, I didn't die.
I had a transplant and now, over 5 years later am hep C free and doing great. My husband was a great support for me during that time.

Hep C and even decompensated cirrhosis are not necessarily a death sentence.

We all thought our good friend Hector was a goner, but he is such a trooper a wonderful survivor~ he had his transplant and is now beating the virus too.
Helpful - 0
Avatar universal
I just now stumbled upon your posting.  I WANT to hear the details about how my death from this disease will be.  I have a man who wants to marry me, but I will not put him through this as well. PLEASE give me the details.
LP5284
Helpful - 0
317787 tn?1473358451
This post and all of the responses really took my breath away.
Everyone's response was so heartfelt, so poignant, I wanted to thank you all for sharing your feelings/stories.
I debated saying anything as I realize this post is a few months old however the message, thoughts, people behind it was so dear, I had to say thank you.
Dee
Helpful - 0
Avatar universal
I am totally freaking out at this point reading the above posts...I am so sorry about you sister...I lost my sister 3 yrs agi who was 49 after she had bariactic surgery...she did well for a week and on Easter Sunday when we were just by ourselves she said to me that I needed to start making arrangements because my health was not even good at that time...we talked about what I wanted and didn't and at that time I was still working fulltime but she said..."all you have to do is call and just say "it's time" and you can come and live with me and my family.  I miss her so much it is unnerving. Even today something in a commerical just made me sit down and start bawling.  Just love her as much as you can.  I am ESLD stage 4 w/decompensated liver so a tp is the only thing left for me. Have good and bad hours...have HE which is the memory loss part of this... I will keep her in my prayers....the info you've gotten above is very good.  Hector is right. I need to start accepting what is going on and make arrangements but it is hard.  I wish I had my sister.  For that Easter she gave me a bunny basket like she always did & the bunny had a locket for me that was engraved "Sisters by Fate, Friends by Choice"...knowing that she will be waiting form me is the only thing that gives me peace in case I don't make it...she is with me daily in spirit....I actually can feel her presence at times.  Give your sister a collective hug from all of us.  
Helpful - 0
1654058 tn?1407159066
You've gotten a lot of good thoughts to chew on from this group. I know you're hurting. I'm still hopeful that your sis will have some good days ahead of her. She's fortunate to have you beside her. My sisters were, and still are, a huge source of inspiration and joy for me throughout treatment. Thank God for sisters.
I know you're a calming presence for her. When I thought it was my time to go, I told my sisters my last wishes. They cried and hugged me, but they made me laugh too. Take care of yourself. xo Karen:)
Helpful - 0
Avatar universal
As many have told you before me I have to say how very sorry
I am to read this tragic post.

My son was number one in our region for a TP and we had just
got him listed 2 months prior. to his passing.
A few months prior he was only able to eat crackers and drink
boost.  I think what bothered him most was not being able to eat
nor drive anywhere at that point.  His feet would swell up to the point
of cracking and he could not wear shoes at all.  We had all the best
specialist etc... he was on lactulose, diuretics and so many other meds.
Your sister is most likely on some right now to help her.
I don't know for sure, but I don't think at  the end in the ER he was in
pain.  When he was admitted his MELD was a 29 and went downhill from there.  The night before they intubated him he had an oxygen mask on
and it fogged up, he was joking around and said "Luke I am your father"
as in Star Wars.  The only time after that is when he was intubated and
they would try to get him to cough.....I could tell it hurt him, they had him sedated, but I could tell by his expression it hurt.  After that organ after
organ shut down and he made his final transition after a bleed in the
brain, the brain was the last to go.
I brought him in to this world and I had to make the decision to let him go.
I think and would  like to believe he was heavily sedated and felt no pain.

My brother passed away at home with hospice.  He passed in my arms
and he was not in pain either, that I could tell.  

There are many details I'm leaving out.  I think the suffering with this disease is painful enough and I know they both suffered on a day to day basis in their own way.
I do wish you and your sister a most peaceful light.
Keep talking to her. make sure you know her wishes.  Give her lots of hugs
and never forgot to say you love her.
Lots of hugs sent your way
Elaine
Helpful - 0
446474 tn?1446347682
You may find this guide helpful.

Final StepS with HCV:
An HCSP Guide on Death and Dying
Lucinda K. Porter, RN

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Final%20Steps.pdf


Take care of yourself.
-`ღ´-
Hector
Helpful - 0
4652753 tn?1364581946
My husband died of complicatons from a combination of HEPC and HIV and I have to tell you that I believe the greatest gift he received was support from me and his children.  It was a tough road to travel but I felt so blessed to have had this man in my life.  I made the decision that his last year would be my priority.  I cut back at work, took him for drives, which he loved, on vacations to the mountains and the sea shore and although he slept through most of it I knew this is what he loved.  When it got to the point that he was still at home but no longer aware of much going on around him my granddaughters took turns sleeping in his room with him.  He went in a coma at home and was moved to the hospital where he gently fell asleep in death 3 days later.

This is all just to say your being there will make it so much easier.  Call on friends to help you because it does become overwhelming sometimes and you need to also take care of yourself.  

My heart and prayers are with you and your sister.  

Helpful - 0
3230925 tn?1397615965
   A couple years ago an acquaintance of mine died while on treatment for Hep C.He was a man from Australia who came to Canada 30 years ago to Vancouver,he experimented with drugs back then including heroin which he tried twice and shared needles.He was asymptomatic until he had a decompensated liver.

This is when he found out he had Hep C.He was adviced to go on treatment by his hepa and did so.He died while he was on treatment.It happened really quick and was unexpected by everyone.Even tho he was on treatment and had near end stage of cirrhosis he still looked relatively healthy,so everyone thought he would make it.I wanted to ask  his wife what happened but at that point she fell into a deep depression and cut off everyone in her life and wouldn't speak to anyone.BTW he left behind his wife and 2 vert young daughters which none have Hep C.
Helpful - 0
Avatar universal
You have given such good moral support on here and God be with you . Dont give up u are in our prayers
bbj
Helpful - 0
Avatar universal
Real sorry to hear about your sister.
In addition to the great advice from others, just thought I would add

"The majority of patients who 
die of cirrhosis succumb ultimately to a complication
of portal hypertension, such as variceal hemorrhage,
ascites, spontaneous bacterial peritonitis, hepatic
encephalopathy, hepatopulmonary syndrome, or
hepatorenal syndrome. These complications are 
also the most common proximal causes of death 
in patients awaiting liver transplantation."
Helpful - 0
419309 tn?1326503291
I'm sorry to read about your sister's condition, and my heart goes out to you and your family.  Death and dying are not easy topics to discuss, but I can well understand you wanting to help your sister with answers.  Liver decompensation does not follow a single pathway in causing death -- different people have different symptoms; for some the journey is quiet and short; for others, it can be a long and difficult passage.

You received good advice from others above; Hospice services can be most helpful in such situations.  Do your best to spend as much time with your sister as you can, and enjoy her in the best health that she'll ever be in this lifetime.  Though it's a most difficult time, try to make the most and the best of it, for the little time that your sister will be here.  In a few short months she may not be much like the sister you know at all.  

My husband died a year ago today after five years of decompensation --  and though it was without a doubt a 'significant experience' in my life and my profile does detail quite a lot of 'what happens' in that process... my suggestion is this:  learn what you have to, but go hug your sister and tell her that you love her as much as you can as often as you can.  My sympathy and best wishes to you and yours.  ~eureka
Helpful - 0
Avatar universal
My sister also had esld and died from liver cancer . She lived with hcv for
35 years before  she treated  but it was too late  It is truly a terrible death. Hospice is a tremendous help.
There is comfort for her that you are there...to have someone to love you through it does really help
Bless you both
Helpful - 0
Avatar universal
I agree can-do-man, it's reality, I lost my Brother 2yrs ago from Hep C and Liver Cancer, he was #5 on the Liver Transplant List at Stanford. I think the worst part for my brother was getting his lungs suction out 2 to 3 times a week.  They kept him pretty drugged up, but like Hector he also had a DNR done and made all his arrangements, he was only 58, my prayers are with your sister and your family.  My Brother never knew he had Hepatitis C till it had attack his Liver, I so wanted to give him part of my liver but the doctors said he needed a whole one.  If I would of been tested 2 yrs ago I would of known I also had Hepatitis C.  I miss my Brother a lot, I recall all the good times we had in San Fran and the Filmore and all the things we did together, he is at peace now and no more pain.. My prayers are with you Hector and pray you get that New Liver soon!

So sorry for your lost Griz..

God Bless
Helpful - 0
Avatar universal
So sorry about your sister, its great that she has such a careing and loving sister like you.

Griz thanks for sharing that story with us as it still must be very hard for you........ and why not let this be in the open forum? Why hide the truth about this terrible Virus? If sis244 story and somebody like Griz story helps just one person wake up and decide to treat then its not all for nothing. Certain posters that say why treat most live with it instead of dying of it makes me cringe..........Sis244 sister is a real person and its terrible any body or family has to deal with this......... Hoping for the best to you, your sister and family....... God Bless.
Helpful - 0
Avatar universal
We are sorry to hear about your sister's illness.  Please post often and let us know how you and your family are doing.
Advocate1955
Helpful - 0
Avatar universal
I am very sorry to hear about the difficulties ahead for your sister.  My wife passed  from cancer last year. As Hector mentioned, you may want to contact Hospice and let them help with medicine, salves and soaps hospital bed, toilet, diapers lots of things she may need. Also they will counsel you and provide excelent directions on how to care for her and set a schedule for sending nurses to help bathe her and check her signs.  As for the, what is it like and will there be much pain? In my wifes case their seemed to be very little, if any pain, probably due to the medication they supplied. I might say they communicated with the doctors beautifully, and from the case worker first arriving till everything was over I felt they told us all of the truth in a very experienced manner which we appreciated.
I pray the Lord will be with you both and help guide her doctors with the treatment.

Griz
Helpful - 0
Avatar universal
All my best to you and your family.
Helpful - 0
Avatar universal
Ditto RGlass - One of the best Hector
Helpful - 0
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