my mother was diagnosed with hep c/cirrhosis 4years ago. she was 52. they believe she contracted hep c vis blood transfusion in the 70's. She found out she had hepc because she felt funny. So they ran numerous tests. By the time they found out she had hepc, cirrhosis began. she is currently in the final stages. she has been in the final stages the past year. interferon almost killed her. Her body couldnt handle it. the past year she has had fluid build up, confusion due to fluid build up, huge belly from the fluid, sleeps alot, days & nights are flip flopped. Recently, shes emaciated, no balance, uses a walker, gets "tapped" (fluid removed every other week), water on brain (is taking meds for this), and is taking meds for removal of ammonia (laxative?) her kidneys are currently affected. Thats what I know. Shes home. In bed. she has one day a week where she feels ok to shower. Then she goes back to bed. this "lingering" state has been going on for months. doctors say she should have been dead a year ago. My question is "how long will this last for?" Any thoughts are truly appreciated....................................
I will leave the answer to your question to others on this forum more familiar with cirrhosis and therefore better able to help you and your Mom during this difficult time.
However I wanted to express how sorry I am to hear of your situation. The loss of a parent is a profound one and I truly feel for you.
Please try and be there for her as much as you can - you won't regret that in the years to come.
Again, I know someone with more knowledge will come forward.
In addition, my mother continues to have the "flare ups" of hep c during her final stages. The symptoms (in addition to whats listed above) are sores, itchy skin (from toxins) hair loss, fever (sometimes infection) and flu like symptoms. oh,, her body does produce any white blood cells or red blood cells (she takes meds for that as well) she also has no immunity. she cannot be around grandchildren. not sure if i was clear or not my moms cirrhosis is caused by the hep c which are the last stages.
i understand she'll eventually go into a coma but has anyone else had a similar experience??????? Its so difficult to have her linger. I cant mourn I cant heal. I cannot move on. Its torture watching my mother suffer. Its been a year. a continuous nightmare.
Your mother could have been a version of me.
In 2005, I was diagnosed with hepatitis C virus (HCV) and decompensated cirrhosis. I couldn't have been more surprised.
I underwent 8 months of difficult interferon treatment only to relapse.
My liver disease worsened.
I had encephalopathy, the ammonia build up from cirrhosis, and had to take lactulose which can cause diarrhea.At one time, when I wasn't taking it, I landed up in the ER delirious.
I had ascites, fluid build up which I controlled through diet and diuretics but that got to be difficult near the end.
I was dying. In my case, I felt like I just kept getting more and more tired. I still got out and walked whenever I was up to it but many days I simply went from the bed to the couch to the lawn chair.
Last April I had a liver transplant and feel better now than I have in years. (The surgeon estimated I only had a few more weeks to live.)
Is your mother being seen by a heptologist ( liver doctor)? Is she listed for a liver transplant?
Is she able to have a transplant?
This is the only cure.
Other than that, you can try to make her as comfortable as possible. Is medicinal marijuana available where you live? It can help her feel better.
How about pain relievers? If she is dying, it doesn't matter if she becomes addicted.
Feed her a salt free diet, and no red meat. Salt increases fluid build up. Red meat adds to the ammonia problem.
Tofu, soy milk and egg whites can increase her albumin levels.
For her itching, try aveno products.
Flax meal in smoothies can help her gain weight.
I'm really sorry you are having to experience such pain.
Remember, this too will pass.
SO happy to hear your transplant was a success and thank you for reaching out :)
yes my mother is being seen by the transplant dept here @ strong hosp (rochester) and her doctor in her hometown (utica). She no longer wants to travel to Strong which is 2 hours away and its too difficult for her to travel. She is listed for a transplant but I highly doubt she'll receive one. She doesnt think her body will handle it since interferon almost killed her. My brother is her only blood match but with him being a state trooper, a father and young my mother will not accept it.
She gets out of bed to to use the rest room but needs a walker and falls down alot. Her body is so tiny (tinier than me and im 112) with a huge bloated belly.
I live 2 hours away from her and have a family. Being a stay at home mom its so difficult traveling & juggling back and forth. Now doctors say she cannot be around grandchildren. I need and want to spend time with her. Half the time she tells me she doesnt want company. I talk to her ont he phone almost everyday if I catch her at the right time because shes always sleeping. I try to explain to her husband to contact me if he feels as though I should come down, but he doesnt understand the point Im trying to make (not too bright) So this is why Im trying to estimate. I probably should just take my daughter out of school for a week and spend time with her.
I know this will pass. This lingering state has been going on for a year. I do believe death is a very important part of life and can be beautiful in its own way. My mother even tho emaciated and covered with sores (from hep c & toxins) still holds her grace and dignity. She also has accepted her death and is at peace at it, which I have accepted as well. The funny thing is my mother & I were complete opposites, never had a mother daughter relationship. 4 years ago when she was diagnosed and became ill we became close and now have daughter/mother relationship. Good things come out of dark moments. I feel as though if my mother never fallen ill, we'd probably never would have connected.
You are an incredible daughter! I do know the pain you are feeling now, as I lost my mother 4 years ago from liver failure. Trying to be there with them and watching their bodies deteriorate day to day was the most helpless pain I've ever felt. Being there with her , caring for her and trying to keep a smile on her face is the is the best thing you can do for her. Fortunately I was not working at the time and could stay with her more often than if I worked. I do not agree with the doctor telling you not to let her be around her grandchildren. During final stages, she should be around all her loved ones. I think you taking a trip and spending the week with her would be wonderful! You will never feel any regret for not taking the time to spend the time with her. Has her doctor sugested hospice care? These people come to the home helping your mother with making her as comfortable as possible, also helping family members cope with what is happening as well as explaining to them just what is to be expected as much as they can.
my thoughts will be with you and your mother,
Since your mother feels she could not withstand a tp, perhaps she is right.
Interferon was hard on me but I wouldn't say it almost killed me. It may have sped up the deterioration of my liver but I don't know that for a fact.
My daughter was 31. She took a month of work. Other than not being able to lift heavy things, she was back to normal within 6 weeks and her liver was completely regrown less than 3 months post tp. My doctor says its good I received a young liver.
However I never was as incapacitated as your mother.
It must be so difficult trying to juggle caring for your child and your mother.I can't remember if you said she is getting hospice care. Fortunately she does have her husband to keep an eye on her.
As you say, good things can come out of dark moments.
Without the dark we couldn't see the light.
My best to you for a pain free resolution to this difficult situation.
My mother is not enrolled in Hospice. I have spoken to her about it, shes done research but shes not interested. My mother is very private and would probably feel uncomfortable having "non family members" in her home.....if i know her. I do respect her wishes. I have however met with hospice for "caretakers grieving sessions" to understand what Im feeling and to get pamphlets for information about the services they offer. Her husband is retired and cares for her 24/7. he cooks, cleans, and makes sure she takes her meds. so even though im 2 hours away I know she is being cared for.
Right now the doctors cant do anything else for her except "maintainence" like tapping and transfusions. Shes now getting tapped every other week and the fluid comes back quicker every time.
.....idk when her final hours will be. the docs say shes been in the final stages for months now. shes just lingering. Im reaching out to inquire about other peoples experiences in regard to correlation of timing and symptoms.
I have stage 4 cyrrhosis and although I know the odds I'd rather put my thoughts into trying to live.I am 41 years old with 3 beautiful children and 3 granddaughters.I have bad days that take over the couple of good days but for my family's sake,I have to be positive.I lost my mom when I was 25 and didn't think I would survive that so my best advice to any family member dealing with this is not to get caught up in quantity of time but quality.Make sure they know they are loved and that you are there for them and that will keep them thinking positive which I believe makes anyones life last longer.
google honestmedicine and read the stories. there is a doctor there that may be able to help your condition.. not sure if the other lady is well enough to travel. please take it from here as I do not care to initate a discussion.
thank you for your post .i went with my mom to doctors yesterday and she was diagnosed with stage four liver disease due to hep c . i feel like my world is ending , it pains me to look at her because i dont know what i will do without her.
My wife has hcv with stage 4 ,, the interferon was so hard she wanted to give up , but she has 4 chidren and 4 grand children and they are her life ., just spend the most time you can , and pray for the best , im devasted that this has happend , im going to spend every moment and every day to make her as happy as the day we met , so is the most utmost priority in my life . i will make this the a lfe she will never forget. i just pray the we will have more time to do things we have never done , my prayers to you and yours .
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