Hepatitis C - Final Stage

[peacegirlvb]

My 53 yr old brother was diagnosed w/ Hep C about 20 years ago.  He drinks & takes xanax/klonopin & other percsriptions the entire time of his disease.  Never took any type of treatment like Interferon due to the drinking.  I think he is at the final stage and dying a quick painful death.  His symptons are:  fluid in addomen down to ankles w/ ankles seeping they are so bad, fatigue, nausea, extreme daily vomiting, jaundice, anal bleeding, horrible poop,  and now confusion and hard to breathe.  He knows he is dying.  He refuses to go to hospital.  Dr. is over 4 hours away. He has ask god to be merciful and take him.  I live 4 hours away and going to see him in 2 days.  I know we will need hospice - he is on medicaide - I don't know what to do... our mother passed of liver cancer/failure 4 years ago and she slipped into hepatic coma and passed one day later.  He looks just like her before she passed.
I am trying to get him to at least go to a local place, Medics USA, to at least get blood work so we can find out what is really going on and if he is indeed dying and quickly..
Any feedback is greatly appreciated.  I lost my mother 4 years ago and my father 2 years ago... my brother is all I have... he has no will to live and is tired of being sick and ready to go to his parents...
Thanks for listening...

[peacegirlvb]

Thank you so so much for your reply.  Tough love has been hard for me to give him in the past, but I am almost numb now with little feeling or sympathy.   I have compassion but my anger is overwhelming... There are other issues that relate to the anger as well... when my mother passed away 4 years ago, he took all of her money and told me the day we went to the funeral home to make plans the following:
"Mom wanted me to have the money and you can have her jewelry - if you don't like it, I don't Fu___ing care"!  I was so devastated at losing my mother that money was never even a thought in my mind.  He was hateful as if blaming me for her death.  No compassion for me whatsoever.  God love my father as he made sure to take care of me upon his death.  I would give all the money I have ever made in my lifetime to just have my parents here on earth with me.  They were most awesome however he manipulated them for the last 20 years with so many things that my parents just conceded to have some peace.  My father passed away 2 years after my mother and during that time, my brother NEVER gave me any love or compassion like siblings should to get thru the loss of a parent.
However, when my father passed, I became his best friend all of a sudden... He and I both are not married and have no children so we were really alone... When I could not "act" towards him with love and compassion - I became his target for his anger and loss.  I spent about a year trying to be that good sister but the emotional abuse was unbearable.  Finally my therapist told me that I have to put distance between us so I could begin to heal and grieve my parents as I never had the chance.  
He is only nice to me when I am agreeing and doing what he wants me to do.  I cannot be that person for him... I refuse to allow him to manipulate and use me.  I have had to learn tough love and I know that it hurts me much more than it does him.  With all that said, once my father passed away 2 years ago... he has been on a mission to drink and pill until he dies!  He likes to be hi but when he gets sick from it, he wants/expects compassion, love and attention...  I really do not have any of that anymore... I cannot become a shell of a person for others which I have done all my life. I cry when I am alone as I don't have anyone in my life who is really truly here for me...  I am still being that strong woman my mother and father taught me to be - and successful which makes me feel like a winner - but I earned that all on my own...
Being able to write down my feelings to others who understand is therapy in itself... Some days I want to throw in the towel but then my inner stength and the Lord steps in and I keep forging ahead...
I am tired of being sad and worried all the time and pray for relief from the pain and heartache...
I know God has a path for me that includes happiness so I am here moving forward and waiting...
Thank you again and God Bless You!!!!

[cheflady]

Hello i feel so sorry for you it as made me cry and i dont really know what to say so i will just say give yourself some breathing space now you no he is not dying he is bullying you mentally and there is only one person who can help him and that is not you but himself i think you need time out to re-evaluate things and look after yourself. I am so sorry that you have been put through all of this and i hope and pray that you find an inner peace god bless you and take care of yourself love Julesx

[peacegirlvb]

After 9 LONG days I am finally able to sit down and update my original post.  The last week has been a very emotional journey.  I left last Wednesday to visit my brother whom I was lead to believe was dying - from Liver Disease/HEP C and Alcoholism.  I knew something was not right in the first 48 hours I spent with him.  He was very swollen/bloated in his stomach and legs/feet were swollen as well.  He had a hard time walking, talking and breathing.  He was somewhat confused but not out of it.  HOWEVER, he never stopped drinking beer or taking his meds.  I watched a pattern form from the time he woke up in the morning.  
He wakes up; goes straight for a beer and his meds; takes his "morning dosages" and begins to "chill out"... He can walk and talk relatively well at this point.  Progressively as he drinks all day along with the meds (mainly xanax and klonapin) he begins to get happy and complains less of pain or dying.  Of course he is getting drunker and drunker as the day goes on... His balance and speech worsens - obviously since he is pounding 10-12 beers a day!  He will only eat about once a day.  He talks no stop but never really has a point...Then he passes out for a few hours.  I watch him to make sure he is breathing.  I cannot sleep but a couple hours each day as I am confused.  Is he dying?  Is he playing a game? Is he really sick?  Is he just a alcoholic and pill junkie?  Once he wakes up, it starts all over again...
He had not showered in 4 weeks when I arrived.  His room was filthy.. that is one thing no one will do for him... clean up after him when he is capable - just lazy!!!
I made him shower and I cleaned/disinfected his room and washed everything!!!
He is very combative with me if I try and talk about the reality of his drinking and pill use with regards to him telling me he is dying.  He keeps to the story that his dr. told him he is dying.  
So, reality sets in when I finally get him to go to the ER since he has not seen his dr. since last October and he now lives 4 hours away from his dr. who told him to find a new dr. new his new residence.  And we really did not have anyidea of what the real prognosis was...
His Blood Alcohol Content via blood test was:  .264.  His liver enzymes were around 165.  His ammonia level was about 105.  His stomach was not full of fluid, but full of gas!  His symptoms were more related to his drinking than his liver.  His liver was in decent shape considering the systematic abuse.  The dr. said he is NOT dying anytime soon.. more like 10 plus years or more... That was good news but the fact that he knowingly lied to the people who love him for more attention or whatever the reasons, is quite maddening!!!  The dr. report sent from his last dr. only stated that he was being treated for Chronic Hep C.  No mention of liver cirhossis or failure... much less that he is dying "soon"...  
Of course I have anger and frustration as I have been dealing with this type of manipulation most of my life with my brother.  I am elated that he is NOT dying but that is a dangerous game to play with your family.  I truly believe he is Narcissistic - he only cares about himself and has no true compassion or feelings for others.
I have so many mixed emotions that it's easier for me to continue the tough love I had to resort to a year ago so I could have some peace in my life.  He will suck the life out of anyone that is close and tries to help.... My cousin just does not see it... she thinks she is showing compassion... I thought that too until I was about to lose my mind from watching someone try and drink themselves to death and taking his abuse - he needs a target.  I am always that target... and I was that target the past week.  
I am home now and know he is not going to die in the near future unless he continues his pattern and most likely will die of alcohol poisoining than liver disease...
I don't know where to go from here since he does not want help.  He wants to be able to drink, take pills and do whatever he wants with no repercussion to his actions.  THAT IS NOT OK WITH ME....  
Lord help me to understand and give my family the strength to find a path of help for him...
Thanks to everyone who reads and listens to my plight... it is much the same for many others I know...
God Bless Everyone!!!!    

[Carlhcv]

I'm very sorry. You made me cry. :(

[cheflady]

just want to say strong you are amazing! My thoughts and prayers are very much with you and your brother. I hope you both find an inner peace.love to you both Jules from England

[heart_in_the_keyes]

It is so hard to watch someone we love so ill....Hector, Billy and Advocate all gave you good advice.  Take care of yourself as best as you can.

[peacegirlvb]

You are so awesome and brave!  Thanks for the "sprinkle"!!!!  Much Love to you Hector!!!

[peacegirlvb]

Thanks Billy!  I'm staying strong and so glad I found this website where I can talk to others who understand!  
Thanks again!

[peacegirlvb]

Thank you for your response.  I have been wishing and praying for a long time that he would get the help he needs to try and survive... I am still praying!!!

[HectorSF]

I am very glad you know how to take care of yourself and find strength in your life despite all the adversity. Congratulations on all your worldly and inner accomplishments. When they are hard earned they are well learned.

I am sorry about your vision problems. As you know we all have things that happen that there is no explain for. We learn to live with it as best we can. That is being brave. We are not what we have lost or what might have been, we are what remains and that is plenty.

It is up to each of us to decide how we view our lives. We can see the glass as half full or half empty. Both are true. Our attitude is what makes the difference between a happy and a tragic life.

' I was angry for a long time but had to find a place to channel that anger away so it did not eat me alive.'
I am happy to hear that you realize that anger and resentment is not helpful in anyway. You are very wise. It hurts us more than those who we are anger with. Try to find ways to let go of it. I know it isn't easy and takes a lifetime of work but the more we give it back to those where it belongs the freer we are to be happy and healthy.

☻/ღ˚ •。* ♥ ˚ ˚✰˚ ˛★* 。 ღ˛° 。* °♥ ˚ • ★ *˚ .ღ 。
/▌*˛˚ღ •˚ ˚…just sprinkling a little Love ~♥~˚ ✰* ★
/ \ ˚. ★ *˛ ˚♥* ✰。˚ ˚ღ。* ˛˚ ♥ 。✰˚* ˚ ★ღ

Hector

[working dog]

cousins know us the best...many times they are our first best friends....make sure to take care of yourself....good luck.....billy

[Advocate1955]

I am very sorry to read about your brother's condition, and also of all of the losses in your life.  I wish your brother would go to a nearby liver transplant center to be assessed so that a transplant hepatologist could determine the extent of his liver damage and treat his current symptoms and make him more comfortable, but it sounds as though he's refused medical interventions in the past, and these decisions have led to his current situation.  Sending prayers to you, your brother, and your family.
Advocate1955

[peacegirlvb]

Thank you so much for caring and talking with me.  I can relate to your illness as my mother and I were very close and we did everything possible to keep her healthy and fight her disease.  I will pray for you and your family!  I will pray God puts a new liver in your path so you may stay on this earth with your loved ones for as long as possible.  
I have been under the care of a psychiatrist and psychologist for many years as I lost the eye sight in my left eye when I was 30 from an occular vein occulsion (I am now 47) - permanent nerve damage in the retinal vein of my eye.  The dr. has no idea what caused it, it just happened.  Having that type of care and the loving care of my family and friends has helped me thru the years.  I have been a Vice President of a company for over 23 years until last year and traveled all over the world, so I have always tried my best to enjoy my life and reach out and seek advice and help for myself so I would not go insane.  You are so right, sometimes it seems impossible, but my faith in the Lord is primarily my strenghth.  It seems whenever I ask him for guidance or mercy, my prayers are always answered.  The power of my spirituality has gotten me thru those tough times.  
I have been preparing myself for about a year now that it is only a matter of time with my brother.  I cannot control or help him get better as he does not want to get better.  We are just wanting to have a plan of action to bring his life to an end as peacefully as possible.  
I will be on the phone in the morning to start the process of having Hospice help evaluate his condition.  He refused a liver biopsy last year and refused to see the "gastro" dr. or allow me in to see the dr. with him.  I live in Va. Beach and he now lives 4 hours away with my cousins in Northern VA.  His dr. is here near me and told him he must see another dr. where he lives now last October.  My brother just simply refuses...
With all that said, it is what it is and we are all prepared to make this as easy as possible but the unknown of his condition makes the whole process much more difficult.  I think my cousin is a Saint as I would not have the patience if I were all alone in the situation.  I was angry for a long time but had to find a place to channel that anger away so it did not eat me alive.  
I will reach out to you tomorrow once I have some information.  Please know that your communication with me has helped me tremendously.  I have you in my prayers now everyday and I feel you must be a great person. Take care of yourself and I will be in touch tomorrow!
Much love and God Bless you Hector!!!!

[HectorSF]

I am very sorry to hear of all the tragedies in your life recently. Please take care of yourself. Be surrounded by loving, caring and positive people. It will help to balance to darkness you have experienced. It is not good to take this all on yourself. It can make you ill either physically or mentally. The larger the 'support group' the better. Get others to help you. Everyone needs a break.  If you ever start to feel hopeless or consumed by death you may be clinically depressed. Please seek psychiatric help who can help you with anti-depressants. It would be normal for someone who has experienced so much loss to become clinically depressed.

Also take care of your own health by living a healthy lifestyle and having yearly checkups with a doctor, especially as you get older.

I also have liver cancer so I think I can relate to what your mom went through. It is very tough and probably tougher on our loved ones. The confusion and coma is what happens as a complication of liver failure. That is what hepatic encephalopathy (HE). He  is how many of us die from liver cancer. It is terrible to see our loved one not act like themselves but it is our brains being poisoned by toxins that the liver normally detoxifies. But thing that it was in any way your poor mom's fault for that happening.

Unlike your brother I have decided I will do whatever I can to live. So I have been fighting this battle for many years now and hope to get a life saving liver transplant soon. I will have loco chemo treatment on my newest tumor in a few weeks and I hope that will help me stay alive so I can get a transplant. Liver disease and liver cancer are tough diseases when they become advanced. Unfortunately suffering and life-threatening illness go hand in hand. But that doesn't mean all is bad for us. We appreciate every day we are still alive. We know that love, family and your friends are what life is all about because we are stripped down to the core. In a strange way facing death can teach us more about life then we ever could have known.

'Stop worrying about what you aint got and start being thankful for what you do have, some people have to make do without it.'

Let me clarify my opinion on your brother's degree of illness so you don't misunderstand me.
Without a complete medical evaluation at a liver transplant center there is NO WAY to say just how ill he actually is. While he has symptoms of advanced cirrhosis, a lot of it can be caused by not being under expert medical care and having his disease managed properly. Also any alcohol or drugs use can make many of these symptoms happen and appear worse then they have to be. When people abstain from their addictions and manage there cirrhosis, many of these symptoms can be greatly reduced again depending on how much his liver is still able to function. The problem is if someone will not get medical help and are having the signs of liver failure it is only a matter of time before they will most likely die from complications of cirrhosis. Internal bleeding, infections, coma, etc. So I can not say how ill he is. Only a hepatologist can do that. He may have much more time then you think or less. No one has a crystal ball.

Here are some hospice resources that will tell you about caring for a dying person.

Caring for Someone who is dying.
http://www.hospicefoundation.org/pages/page.asp?page_id=171381

Acts of Love: Caring for a Dying Loved One
Providing Safety and Comfort to the Dying
http://dying.about.com/od/thedyingprocess/a/care_143_dying.htm

End-of-Life Choices: Holding on and Letting Go
http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=400

Caregiver Stress
Help Yourself Help Others
http://dying.about.com/od/caregiving/a/stress.htm

Let me know on Monday what Medicare says. I will help you and your brother in any way I can.
Hector

[peacegirlvb]

Thank you so much for the kind words and guidance.  You are so right in the fact that he has to want to live and he simply does not.  He has always been a weak soul and chose the life of drinking and drugging to his own detriment.  But as you know, the loving part of me just wants god to reach down and take him into his arms so the suffering for him and I can reach it's end and I can move on with my healing.  I had to give him tough love for many years as I could not enable him but it really only hurt me in the long run.  
I am glad to know that I can just contact Medicaid describe the situation and hopefully have Hospice evaluate and provide the necessary care.  
My cousin is a god send and he lives in a beautiful place in the mountains of VA.  I feel in my heart that his days on our earth are limited and the end is near.  From all the research I have done, every possible sympton of the worse kind he has began to experience in a fast time frame.  Slowly we have watched the fluid, fatigue, vomiting but over the last week the severe symptoms have come on with a vengence.  I think common sense and past experience with my mother (along with my gut feeling) tell me that it won't be long.  
My poor mother never drank and had auto immune liver disease that turned to liver cancer.  After 20 years of suffering, within 2 weeks of going into the hospital, a liver biopsy was done on a Monday and she passed in my arms that following Saturday.  I watched her go from being my loving mother to being confused, then a coma and then passing.  
My father passed of congestive heart failure due to complications of acute diverticulosis where his stomach was opened up and he never left ICU.  This all within the last 4 years!  
Thank you so much for writing me as it confirms my fears and the time frame being so immediate I just don't know if it will be days or weeks.. I truly believe days...
Hector, God Bless You!!!  
Any other sharing of information is greatly appreciated.  I can't sleep... I've been reading for hours and seeking some sense of reality and how to deal with this...

[HectorSF]

I am so sorry about your situation. I wish I had a good answer for you but in the end it is only your brother who can save his own life. It must be horrible for you to have seen what happened to your mom and now what is happening to your brother. I really can't imagine what you are going through. I hope you may find something useful here.

'fluid in abdomen down to ankles w/ ankles seeping they are so bad, fatigue, nausea, extreme daily vomiting, jaundice, anal bleeding, horrible poop,  and now confusion and hard to breathe.'
These are all signs of advanced liver disease and some can be fatal unless properly managed.

'A damaged liver affects almost every bodily process, including the functions of the digestive, hormonal, and circulatory systems. Decompensated cirrhosis increases the risk of serious and potentially life-threatening complications. (Once decompensation occurs, mortality rates without liver transplantation can be as high as 85% within 5 years.) The most serious complications are those associated with portal hypertension (increased pressure in the portal vein that carries blood from the intestine to the liver). They include:

*  Ascites (fluid buildup in the abdomen)
*  Variceal hemorrhage (bleeding in the upper stomach and esophagus from ruptured blood vessels)
*  Spontaneous bacterial peritonitis is a form of peritonitis (inflammation of the membrane that lines the abdomen), which is associated with ascites.
*  Other bacterial infections are also a common complication of cirrhosis.
*  Hepatic encephalopathy (damage to the brain). Impaired brain function occurs when the liver cannot detoxify harmful substances, and can lead to coma.
*  Liver cancer is a serious long-term risk with cirrhosis.
*  Other complications also occur.'
http://www.umm.edu/patiented/articles/what_symptoms_of_cirrhosis_000075_4.htm#ixzz2LoFNriQe


'he has no will to live '
'He refuses to go to hospital.'
'He has ask god to be merciful and take him.'
First your brother has to want to live enough to ask for help. Which means he will have to stop drinking and drugging if he want to live.
Then the only place that can keep him alive is a transplant center. They are the only doctors that know how to deal with patient's this ill from liver disease.

'go to a local place, Medics USA, to at least get blood work so we can find out what is really going on and if he is indeed dying and quickly '
Going to a local place we only tell you what you already know. If he doesn't want and get help soon he will die from complication of end-stage liver disease as your mother did I am sorry to say.

If he just wants hospice call Medicaid. Tell them of the situation and that he is seeking hospice care. They will tell you what to do.

This is for the state of Virginia.
1-800-468-8894 (M-F, 7 a.m.- 6 p.m., toll-free)
Here is a list of all Virginia Social Services including local offices.
http://www.dss.virginia.gov/contact_us/

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http://www.dss.virginia.gov/files/division/bp/medical_assistance/manual_transmittals/transmittals/transmittal_97_cover_letter_091712.pdf

HOSPICE

A. Definition "Hospice" is a covered group of terminally ill individuals whose life expectancy is 6 months or less and who have voluntarily elected to receive hospice care. The term “hospice” is also used to refer to the covered service for a terminally ill Medicaid recipient, regardless of his covered group.
Hospice services can be provided in the individual’s home or in a medical
facility, including a nursing facility.

1. Hospice Care "Hospice care" means items and services are provided to a terminally ill individual by, or by others under arrangements made by, a hospice program under a written plan of care for the individual that is established and periodically reviewed by the individual's attending physician and the hospice program's medical director:

2. Hospice

Program
A "hospice program" is a public agency or private organization which
• is primarily engaged in providing hospice care, makes hospice care
services available as needed on a 24-hour basis, and provides
bereavement counseling for the terminally ill individual's immediate
family;
• provides hospice care in individuals' homes or in medical facilities on
a short-term inpatient basis;
• meets federal and state staffing, record-keeping and licensing
requirements.

B. Procedure The individual must elect hospice care in a non-institutional setting.

Election of hospice care is verified either verbally or in writing from the
hospice care provider. If verification is verbal, document the case record.

I wish you the best of luck. Let us know if you need further help and we will try to help you and your brother. Lots of love to you.
Hector