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4966983 tn?1361750055

Hepatitis C - Final Stage

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...
16 Responses
446474 tn?1446351282
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
4966983 tn?1361750055
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...
446474 tn?1446351282
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
4966983 tn?1361750055
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!!!!
Avatar universal
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
190885 tn?1333029491
cousins know us the best...many times they are our first best friends....make sure to take care of yourself....good luck.....billy
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