I need questions answered

My mother has been suffering from Chronic Hepatitis c for many years now.  Recently, she was diagnosed as having Encephalopathy.  The doctor told her that she was at the final stages of her liver and that there was nothing else they could do for her but keep her comfortable.  I am currently overseas.  I need to know just how long "final liver stages" are.  The doctor told her that doing an ultrasound would give him an exact estimate of how much time she has left with us.  The ultrasound was done but he has not given her any results not even a phone call.  She looked at the screen when the ultrasound was being done and all she saw was what looked like holes and craters.  Of the information I have given you, can you please tell me your "guesstimate"  of how much time my mother might have?  I have 2 wonderful children that she needs to spend time with.  Her doctor to me is taking on the "Oh Well She is gonna die " attitude and it hurts.  I need to know.  One more thing, when she woke up the other day, she couldn't move from her waist down.  She said it took about 15 minutes to force herself to move.  Is this common in the final liver stages?  I know she is dying she knows it too, what else is going to happen to her?  She is forgetting things even if they are told to her within 5 minutes.  Sorry if I am londwinded but I am a concerned daughter who loves her mom.  Please tell me how much more time you "think" I might have left with her.  I have no problem in dropping everything to be with her.  She is always in so much pain and crying.  Please help me.  ANYONE!  SOMEONE! PLEASE!

[rearfang]

I am so sorry you and your family are facing this. My heart goes out to you. I'm sorry but I don't know the answers to your questions.

[honey1616]

Please find a specialist in your moms city for hep/liver and get her there.  This is urgent that you act on this.  An ultra sound will not tell enough about the liver.  Your mom needs a biopsy to see condition of liver.  She can be put on treatment for hep c to try to stop it doing damage.  Or if she is in fact at end stage,,,get on liver transplant list.  You need a copy of all her bloodwork done and ultra sound results and biopsy results so you can find out how good or how bad off she is.  I hope this helps get you started immediately and we are here if you need more directions for terms,,etc.  Your moms life can be saved,,,Just everyone needs to move quickly and get her help with a dr familiar with liver disease and hepatitis.  Good Luck!

[DRAGON SLAYER]

I'm sorry that your mother is having such a difficult time with HCV. However, this is a patient-to-patient forum & I doubt whether you will get any professional advice here. There are physician-only forums that should answer many of your questions.
Below is a link to Dr Ben Cecil's forum (Hepatologist) who answered my questions for free & I'm sure other members here will provide you with additional links.
http://www.hcvinprison.org/forum_new/forum.asp?FORUM_ID=2
(You'll have to register first)

Good luck to your mom & you,
Ben

PS-Pls keep in touch & update us with her progress.

[cuteus]

there are some forum members that experienced ESLD and might come back later to give their view, check back later.  ai agree with HOney, get your mom to a hepatologist or Research Hospital ASAP. Sha should get biopsied for more accurate results. Some in ESLD can not treat the viris, but some can.  What do you have to loose by trying?
best to you

[bzzracer]

I'm sorry to hear about your mother's condition. I, too, am in concurrence with the other responders - get her to a transplant center or an hepatologist who are experienced with liver failure treatments and cures. What your mother saw during ultrasound as holes may very well be hard tissue on the liver - lesions, which appear as dark spots, or holes. Demand a biopsy along w/a CT Scan. There is hope...don't give up.

[Forseegood]

New Sojurn, what a inspiring post. Hope she gets some comfort knowing there are can do people out there who never give up!

[Micro2]

Please do not misunderstand what I am about to say. If you are as concerned as you appear to be, then whay wait? The question of how long should not matter. Go now!! Sounds to me like you will regret it if you dont get this right. God be with you!

[new-sojourn]

I was dx w/end stage liver disease after a major, nearly unstopable esophageal bled due to very, very low plattlets.  The doc's told my 82yr old bedridden estanged mother that I wouldn't make it thru the night.  that was 9-12-01.  Well, I did.

I then was tested for hep c and had hep c 2b that I had acquired 2-16-67 thru a transfusion and had been dis-dx all those yrs.

I got in a study for treating end stage liver disease hep c patients.  Well. I cl'd the virus in 18 days, fin 24wks and have never looked back.

I feel yrs and yrs younger.  No more joint problems--before I couldn't open a door or hold a pen or drive.

I had it all-encephalopathy, acsitis, emotional/ragy behavior.

It's nearly 3 yrs since I cl'd and I just know that I've reversed much damage.

I'm a food nazi now!  I drastically overhauled my eating, drinking and added daily walks and still do tons of tea and vit/min and herbal supplements.

Lay off the meat, dairy-dairy is very important b/c it converts to ammonia that caused encepholapathy really fast.

Whole grains, fruits and veggies-esp steamed and juiced from now on.  low fat, low dairy, low protein, low salt, low transfats.

Time you spend now helping her get thru tx and making lifestyle changes will ultimately buy you yrs.

My personal belief is that no one is too sick to treat.  And I was as sick(I'm 50+) as your mom and sctually started feeling better immediately on tx.  not worse, better.

[kia231]

Thank you all for responding.  My mother is seeing a liver specialist and has been told that she would not be able to get a liver transplant because there is so much wrong with her.  She even went to Duke Medical Center to see if she qualified. Her doctor told us Monday that he wants to do a cat scan of her liver to survey they damage.  Does anyone happen to know what a CT scan of the liver will do?  He said he wanted to do a liver biopsy but he feels that she is too far gone and that it might hurt her more.  She is beginning to lose her memory and she is always in pain.  I asked if he could do tests to find out what stage of encephalopathy she is in and needless to say, we are still waiting for an appointment.  SHe has been referred from doctor to doctor from place to place it is beginning to strain her badly.  Again I thank you all for help and advice, it very much appreciated, (9 Mar 05)

[cuteus]

insist on the biopsy. what state is she at? maybe someone here can direct her to other specialists in the area for a second or third opinion.

[kia231]

My mother is in North Carolina.  If anyone knows of any doctor she can see please let me know.  I really appreciate all of your advice and help.

[cuteus]

post your question in one of today's threads, I know some people have links to finding a dr in every state, I never copied them.  Duke sounds like a good place, but I hope they do a biopsy.  stay on top of things, don't worry about coming on as pushy and aggressive, you only have ONE mom, they have MANY patients.