Is it too late for my sister? Sorry so long. I'm alone and lost

[Megjp]

I am finally telling my story to those that want to listen...but....
Where do I start...
I grew up alone. Just one sister and my Mom.  No other family. And Mom was an only child in her adoptive family. Adoptive Grandparents passed when I was 8.

My mom was diagnosed with hepc in November 2009.
She and the docs figure she contracted it in early 80's after a blood transfusion. I myself am not sure ( I clearly remember seeing her use needles we I was young, -born in '82)so either way I guess she had it about 30 years before discovery. Not sure when she stopped using drugs...I think when I was 10-ish
She was vomiting blood...alot of blood. I rushed her in and she was diagnosed...all made sense after that. I honestly thought she was losing her mind...I guess in a way she really was. But all to do with ammonia levels.
Anyway. She had extreme cirrhosis and was put on transplant list. Followed instructions to a T and really looked forward to being healthy again. Fast forward, she developed tumors on her liver...it brought her closer yo transplant so we weren't too upset. But then she developed a tumor on her portal vein...inoperable I watched her world crash around her . I literally saw her heart break through her eyes. They gave her 6 months. Worst 6 months of our lives. I watched as her life was slowly but painfully taken away from us (her and I). I cared for her and loved her until she was gone.

My sister was diagnosed with hepc during routing pregnancy bloodwork in 2005. She ignored it and never got follow up. She is a drug user and an alcoholic for as long as I can remember. Never stopped. She is 16 months older than me. (36)
In June 2016 she was bleeding like mom. Rushe'd her in. She got blood transfusion and was in icu. She was on breathing machines and the doctors said her next bleed would kill her. She won't last a month. Kidneys were failing due to the diuretics used to control her swelling and ascites. Her encephalopathy was extreme. They removed machines and said they cannot give any treatments to issues directly related to liver disease (because of alcoholism? Not sure why). A few days later she miraculously woke. Doctors (three of them) said it's because her other organs are still young and her body is trying to live. But it won't last. Within a month she will succumb to the disease. Most likely kidney failure or blood loss. Her nose would bleed for hours. Anyway. She woke and said 'wtf is going on?' 'Where am I?' . I broke the news 'sonja...you're dying.' I was bawling.. so was she. I went home that night...said 'stay strong and I'll be back tomorrow...wait for me. Don't you leave like mom did'...I have 5 kids and had to go home...that night the hospital called...I was already bawling before they spoke. I knew she had died...but they said quite the opposite. They said she left...snuck out!!! Are you kidding?! She has encephalopathy...she's not right in the head! How could you let this happen...how did she even get out of bed. She was completely fkn drpendant (pardon my french). She called me later...said 'sorry meg. If I'm flying I'm doing it at home with a drink in my hand. Has continued to drink and just finally went back in to hospit al today. I called an ambulance...we live in different cities but we were talking on the phone and the encephalopathy was back big time. She was making no sense. Here we go again... what can I expect? And how did she defy all odds?? Sorry for the book! any questions/input?
I hate this disease...it has ruined my life and stolen my family!

[Mugwump]

All I can offer is my tears of understanding. You are not alone in this your strength is your love.  This is the tragedy of HCV there is no recourse for some other than to watch it kill others that they love. I am sure everyone here feels the same reading your plea.

What you have done is much more than what others could bear and you deserve comfort for this. All I can offer is my words and prayers for you to see a better day when this horror is all behind you.

Eric

[MariettaMechanicalMan]

I am so sorry to hear your story, your family is in my prayers! As far as medical advice I am not a medical professional and can not offer any input, however I have been in a similar situation. My friend had been using drugs and all of a sudden he got a horrible cold. However, later when he had a stroke we found out indeed no it was not a cold it was a staph infection that turned septic and latched onto his heart valve becoming endocarditis, making him require a new pig heart valve. To top that off he also had Hep C. He was on every life support imaginable and was declared by the doctors the sickest person in the ICU in Emory in downtown Atlanta. I went and visited him as many times as I could, and every time I visited the news only got grimmer and grimmer. He only had maybe a 3% chance of surviving the surgery they had planned for him, and I had accepted the fact that he was probably going to die but did not give up praying for him. The surgery was very intense, his heart needed to be stopped and his blood needed to be filtered through a machine in order for it to even begin, and many people's hearts do not just start again after that. However, he survived the entire ordeal. Before he woke up the doctors assured us that he would have brain damage and he would most likely not be the same as he used to be, however he woke up fine. After witnessing this all with my own two eyes, I realized how powerful God truly is and learned that if it is not your time then He will protect you. I will pray that your sister is given a chance at the modern Hep C meds, maybe Harvoni can give her a chance. Good luck to you and your family, and stay strong.

[andrew j]

Hi Megjp,

I keep thinking about you - and hoping that you are OK.

I can't really add to what the others have said (Marietta has said exactly what I would have said) - but, like them - I am thinking about you, and praying for you.

Hoping it makes a difference.

Best wishes,
A.