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worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 4/27/2009 2:13 PM (GMT -7)   
hi,
i am really confused. my mom has hepatitis c and cirrohsis of the liver. she also has been having ascitis(SP). they took out a week ago 2 gal of water and she still had a liter in her and now she is back to where she was before the drainage if not worse. even her whole body swells after a while of walking or standing. she has 8 lbs of water in her. she is having a hard time breathing, looks bigger than my 7 month pregnant sister and coworkers, and the water pills have not worked for her. they put her on lasix but i dont think that will work for her. when she eats she can only eat a small burger(bout the size of a junior hamburger from wendys or bk) and then she is in pain. they dont want to drain her anymore. her hep viral count was 3 million and she says her doctor said she is in stage two cirrohsis and hep which i think he is an idiot and dont give her the time she needs and seems to have one foot out the door but with no insurance and ssi screwing around she cant do better. well she went and got a copy of her medical records and looking through them i seen this statement
 
hep c cirrohsis grade 2-3 stage 3-4 genotype ia hep c
 
also one said same thing but added stage 3-4 fibrosis.
 
can anyone tell me what this means. i am really afraid that the way things are she is gonna die in several months or less. her body is not releasing any sodium either and she is in pain and the doc refuses to give her any pain meds and doesnt even acknowledge it.
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/27/2009 2:45 PM (GMT -7)   

Hi, Worried Girl, and welcome to the forum.  Has the doctor mentioned hep C treatment for your mom?  How much Lasix is she getting?  It could be that she needs a higher dosage.  Also, she should NOT be eating burgers...not even a small one.  Red meat is the worst protein for the liver...very hard to process.  My suggestion would be to curtail her sodium intake (look at labels...canned veggies have a lot, as do soups.)  Use lemon juice instead of salt or use a salt substitute.  As for the stages and grades, I can't tell you.  It just indicates the degree of scarring.  fibrosis is scarring.  Genotype 1a is the kind most hep C sufferers in the U.S. have and it is the hardest to treat.

I assume your mom is not drinking?  Unfortunately, you are right about the poor care w/o insurance.  I hope that your mom will soon get Medicaid, although that's not the best either.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 4/27/2009 2:50 PM (GMT -7)   
the tried her on the shot and it screwed up her body. her viral count went up real high on it. she very rarely eats cause of the pain. the hamburger she ate because i bought for her to eat. she not much of a meat person anyway and has been eating little sodium. i am worried that it is actaually stage 3 or almost four hep and cirrhosis and not two like she says. i really fear that she is gonna die soon. i really dont see how she can keep going with all this water retention. she is at the hospital at least once a week. she has even had jaundice, she is alot better of jaundice but i can still see it in her eyes a little. she is very forgetful too. i think her doctor is an idiot and i wish there was more i can do but i see her wasting away. she is 50 and looks like she is 80 and even in her records they all say she looks  older than her age. they say it is chronic. i hope someone can answer the question about the stages and grades

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 4/27/2009 2:54 PM (GMT -7)   
and 40 mg lasix

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/27/2009 3:59 PM (GMT -7)   

She can go higher on the Lasix, but potassium or Aldactone should also be increased along with it.  Ask the doctor about raising the dosage of the Lasix and Aldactone or potassium.

The stages/grades don't mean as much as her overall symptoms and how she is doing.  When a person has the symptoms you are describing, it is known as decompensated cirrhosis.  This means the liver function is poor.  Has a transplant been discussed?

I suggest you read some of the educational posts on the main page.  There are quite a few and they will give you some answers to your questions until you can question the doctor.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 4/27/2009 4:48 PM (GMT -7)   
she is not a candidate for a transplant. so how long can she go like this. the water is already putting pressure on her organs. her doctor doesnt seem to want to answer our questions and didnt even tell her she went past stage 2, unless she forgot about him telling her this. i do now have her medical record. but he doesnt seem to be encouraging either.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/27/2009 6:02 PM (GMT -7)   
Sweetie, please read the topics on the main page:  Stages of Liver Disease, Comments on Death and Dying, and End Stage Liver Disease Symptoms and Developments.  These should help answer some of your questions.  Nobody can tell you how long she has left, as it differs from person to person.



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 4/27/2009 7:07:08 PM (GMT-6)


5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 4/27/2009 8:15 PM (GMT -7)   
Dear Worried Girl,

I can tell you that what you describe sounds like where my friend, Mary was almost 2 years ago. Once her meds were adjusted she has been able to maintain a minimal, but stable life. I thought she was going to die within a few weeks on several occasions back then. So it's very hard to predict where your mom is in her disease. If your mother is still drinking, some doctors really frown on that. This is serious business, ESLD. I'm just trying to help assess why the doctor seems so uncaring. I have to admit that early on, Mary was treated pretty roughly (verbally) by the doctors. It's just that they know how harmful alcohol is to the damage that's been done. When someone keeps drinking, it is frustrating to others who are asked to help. I hope you read other posts in this forum. You will learn so much. Take care of yourself too. It's easy to forget ourselves when someone we love is so ill.

Joan
Best friend is in ESLD, has HepC and cirrhosis. 


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 4/28/2009 5:05 AM (GMT -7)   
she claims she is not drinking and the meds did not work on her so it seems there nothing they can do

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/28/2009 10:49 AM (GMT -7)   
Then the best thing she can do is to eat a proper diet, free of red meat, high in fresh fruits and veggies.  Unless she is on fluid restriction (ask the doctor about this), lots of good water.  Plenty of rest, which may mean sleeping 12 hours or more at a stretch.  And, as I mentioned previously, ask about an increase in Lasix.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 4/28/2009 3:01 PM (GMT -7)   
took my mom to get her lasix, i payed for it cause she has no money but hey i dont mind and i had to hear her cry. she is so depressed but her depression meds arent working cause nothing is really digesting in her system cause of all the water retention. i showed her what to look for in labels not that it will do good cause she is so full of water she cant eat. she has talked about dying quite a bit and i really am afraid she is done fighting. she is so depressed and just says what is the point of fighting. i know this is the hep talking to and she dont mean it but it scares me cause she is depressed and whats worse is her irritability. it is very frustrating this disease, and i dont even live with her. i dont know how to help her and i am wondering if i am doing enough to help her. i love her but this is putting some stress on me and i can feel it too. i am so worried that i am gonna get the call and i feel it coming. i know it sounds weird but when it comes to my family i am sensitive in the death department. i knew with my grandma when she was in her coma she was gone and with my grandpa in his but this was when they were in the comas. but my fear is my mom dying. i know i am being unreasonable and that i am just too close to this but my gut is telling me to get prepared, i am even dreaming of it. my hubby is very supportive but he doesnt like my mom, cause of her drug and alcohol history and all she has done,(she not drinking or drugging now) so i can only depend on him, my sister just is not one to talk to cause she has her hands full and she doesnt want to face the facts so i dont have anyone to talk to. is there more i can do to help her

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/28/2009 3:12 PM (GMT -7)   
You need to let her doctor know that the antidepressant she is currently taking is not working for her.  There are any number of other antidepressants he can prescribe.  It often takes trying several different ones to find one that will work.  You can also try to encourage her to hang in there.  Tell her that God hasn't seen her through so much in her life to give up on her now.  Tell her that you need her.  The irritability can be a result of high ammonia levels or just because she is "sick and tired of being sick and tired." 

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 4/28/2009 3:28 PM (GMT -7)   
why are you guys so wonderful. willingly answering questions to people you dont know. i feel i have gotten more information from you guys than her doctor and showing my mom this she says the same stuff. thank you so much. i feel so lost and alone in this and you guys are helping. how can i convince my mom to go to a support group for this, i mentioned it and she was like why so we can die together

5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 4/28/2009 7:41 PM (GMT -7)   
I think if I was facing death I would be pretty irritable at times too! As Connie said, it is probably the ammonia levels. I lost both of my parents when I was pretty young and some other people whom I really cared about. So I'm not totally new to facing really hard and sad events in my life. But I will tell you this, I watched my mother live 8 years after a severe stroke. She was only 57 when it happened. One of my greatest fears has been to know that I am dying of an illness. So when I am with my friend Mary I am in awe of her composure at what she is facing. I think it's cool that your mom is taking in some of this forum. That's a type of support she's willing to learn about. Your mom is probably really appreciating what you're doing in trying to learn about ESLD. Whether we can do anything to fix something might not always be the point. You and your mom are together and comforting each other at a really hard time in your lives. That's love.

Joan
Best friend is in ESLD, has HepC and cirrhosis. 


caring 4 mama
New Member


Date Joined Apr 2009
Total Posts : 5
   Posted 4/29/2009 12:49 PM (GMT -7)   
HELLO-
I am sorry to hear about your mother. i can relate on many levels, my mother is going through the same situatuion. it took six months for her ssi to go through, even after she got ssi i had to get a care aid in her gome working for them to approve her medicaid. dont ask me why this is stupid. anyways the doc i took her to was rude to say the least told her she was dying and had 2 to six months and said goodbye after refilling her perscriptions. i was REALLY UPSET.

caring 4 mama
New Member


Date Joined Apr 2009
Total Posts : 5
   Posted 4/29/2009 12:53 PM (GMT -7)   
I posted before i was done, anyways, no one will give my mother pain meds either, i dont understand that either, why when someone is dying would you not want to keep someone comfortable when you are telling them they are dying. my mother is on zanex, and zoloft for anxiety and depression and when she doesnt have them she is miserable, more than normal. she constantly talks about dying but partly because of me, i am trying to get her to get her affairs in order, at least help me do it for her and she is just wanting me to get power of attorney, i dont know what that entails exactly if someone could answer that question that would be awsome, where do i get the forms, how much is it, what does it mean? hope is all there is without it, there is nothing left, that is what i tell my mother all the time. there is still time, so dont give up hope.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/29/2009 2:00 PM (GMT -7)   

caring 4 mama, I would suggest that you get hospice involved.  The doctor will have to tell them that she has less than 6 mos. to live.  They can then provide nurses to come to the home and can get her pain meds.  Doctors always bow to whatever hospice recommends.

In regard to Power of Attorney, it would enable you to have access to any bank accounts she might have in order to pay her bills.  You would basically be acting as though you were her.  However, I believe you also need a Medical Surrogacy, in order to have a say in her medical care and to access her medical records.  Does she have a Living Will?  Medical Surrogacy is usually a part of that.  Persons I've known who obtained PoA did so through a lawyer.  I don't believe you can do so just by filling out forms and having them notarized, as you can with the Living Will.  If she doesn't have a LW, that is the first thing you need to do.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 4/29/2009 7:41 PM (GMT -7)   
Connie,

Where do you go to get these forms or talk to someone about them? Would her doctor's office have these things?

Thanks! You do a great job on here, girl!

Joan
Best friend is in ESLD, has HepC and cirrhosis. 

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