Hi, my mom has Hep C, she didn't know and has had it for about 25 years, two years ago she was diagnosed due to a bleed in her esophagus, she was put on the transplant list, 5 months ago we found out that she had a tumor on her liver, which was actually good news because it mover her closer to transplant on the waiting list, then 3 months ago after getting a TACE procedure done we found out that the tumor had spread to her portal vein, her hepatologist had said that the tumor was growing at a rate of 33% and that she had 6 months to a year of life left, no transplant, our world crumbled, anyways, my mom is now living with me so I can take care of her and have some memories made, I have 6 young children (4,6,9,11,11,13), things have been hard, we are 3 months in to our 6-12 month wait, I was just wondering, she has been very tired sleeping about 20 hrs a day, very irritable, cant eat without throwing up, she cant even keep her lactulose down and that one is crucial, she has cataracts in both eyes and is partially deaf, needless to say she feels like giving up, she is in constant pain and her doc basically says that things are just running their coarse, he doesn't want to do any more mri's because the results wont change anything, I was just wondering, if anyone has dealt with this and a loved one before and what can I expect?... how accurate are the docs when they say 6-12 months?... I just want to prepare myself, I love her very much and feel that I kinda need to know what to expect and when....like I said, I have 6 children and I wouldn't want something horrible to happen here at home, she refuses to go to hospice though, she still can carry on a conversation and she still thinks fairly clearly, just mostly not eating more than a 1yr olds portion per day at most, if that, and even sometimes going days with no food, she is drinking ensure, and sleeping a lot, is all this normal progression?....any feedback or stories would help....
I am so sorry that you're in this situation. My heart really goes out to you.
As to what you can expect I am sorry to tell you that things will only get worse. I understand why you want to take care of your Mom and I'd feel the same way. But, there will come a time when you might not be able to care for your Mother and you should prepare for that eventuality. You say that your Mother thinks fairly clearly and that is a good thing. In end stage liver disease we often see hepatic encephalopathy(HE).
"....Symptoms (of Hepatic Encephalopathy) may be mild at first. Family members or caregivers may notice that the patient has:
Breath with a musty or sweet odor
Change in sleep patterns
Changes in thinking
Confusion that is mild
Personality or mood changes
Worsening of handwriting or loss of other small hand movements
More severe symptoms may include:
Abnormal movements or shaking of hands or arms
Agitation, excitement, or seizures (occur rarely)
Drowsiness or confusion
Inappropriate behavior or severe personality changes
Slowed or sluggish movement
Patients with hepatic encephalopathy can become unconscious, unresponsive, and possibly enter a coma.
Patients with hepatic encephalopathy are often not able to care for themselves because of these symptoms..."
I think that if your Mom's condition deteriorates significantly it will be very hard on you but it will be so very much harder for your children to witness. I have had some experience with Hospice and mine has been good. I think that most patients are reluctant to go to Hospice but feel differently once they are under Hospice care. I hope people with more experience and knowledge than I have will respond here because I feel rather inadequate to advise you in this regard.
Regarding how long you Mom has to live I can only say that no one can really predict this with any certainty. I wouldn't argue that the doctor is wrong but I wouldn't be surprised if your mom's death came earlier or significantly later than predicted. I think the real question is how long will you be able to care for her and how will your children be affected if she starts to deteriorate significantly.
I'm sorry I don't have better news for you. I do wish you and your Mom the best.
Hi, you might ask your doctor about pallitive care, it is like hospice but focuses on pain management, then when needed they can refer to hospice. If you have a local hospital they might ave this service, or you could call hospice and ask about this. My husnamd has hep c, cirrohis of liver with massive ascites and end stage liver cancer that has now spread to other organs, we have done radio embolization a life extension treatment and chemo embolzation with little help. Because the ascites was so bad e developed a huge hernia in belly finally they installed a drain in his belly and i take fluid off his abdomen area almost daily. They have been telling us that he will die in a month or so for 9 months now. But he wants to live so we have ignored that and are just living everyday. I begged and begged and the docyos finally gave him nexavar a very expensive csncer medicayion that we started ths morning. I am very lucky to have insurance. However he was just in the hospital and his roomate is on SSI and he wS getting all kinds of treatment. If your mother does not have insurance your county may have a public health nurse who could help you obtain some care. Good luck to you, I know it must be a tremendous effort to raise your family and care for your mother, but you are a tremendous person for doing so.
Thank you so much, I really appreciate your help, things have been tough, and it's very hard to watch all of this happen, the worst part is that it is so gradual, so slow going. not that I wish for things to happen sooner, it's just hard to watch someone with so much independence become so reliant and unwilling to try. She has pretty much given up on life, she says that she doesn't want to live if it means that she has to feel the way she does with no chance of getting or feeling better, I'm not sure if that is a normal reaction but im sure the negativity isn't helping, and I really wish she would eat more, I almost feel like she is trying to slow her body down by not eating, she does have some of the symptoms of HE, she gets confused sometimes and also thinks that people are stealing from her, she forgets where she puts things, and gets very drastic mood swings, but for the most part she is thinking fairly clearly, but she is only awake a couple hours a day. I have mentioned Hospice and she refuses to go into care, she doesnt think she needs it, and we did have palliative care come to the house, but she didn't like the nurse and told her she wanted her to leave and didn't want help from palliative care....that was hard to watch also, and I was very happy about PC, it is pretty hard on me when I am doing it alone, the help would have been nice. anyways, again, thank you very much, support is very reassuring in this difficult time <3
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