Chirrosis of the liver caused from hepatitis

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Sad Daughter
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/19/2009 2:22 PM (GMT -7)   
My mother was diagnosed with chirrosis 4 years ago which  came from having hepatitis and not being treated currectly at the time.  She is currently in a nursing home for rehab. because she can no longer stand on her own.  Since she has been there she has started to retain fluid and due to this the doctors cut her off of all fluid intake except for at meal time for they were afraid of heart failure.  I noticed she started going down hill very quickly and made the doctors start her fluid intake back up. I am not a doctor but I know that a bad liver needs fluids to help flush out the sodium deposits that build up which in turn reduces the fluid build up.  I have seen my mother have spells before and she comes back and does well.  This time she acts as if she has had a stroke.  She leans to one side and her speech is slurred.  I keep asking the doctors what is going on and they say they are not sure.  I know that she will die eventually, but  she does not have to die now and has anyone heard of this happening.  I can handle it if she is at the end, but if she isn't what can I do.
Thanks

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/19/2009 3:51 PM (GMT -7)   

Hello, Sad Daughter, and welcome to the forum.  I'm glad that you found us, but sorry for your mother's illness.  I, too, have cirrhosis from hep C, but am fortunately stable at this time.

Are they giving your mom Lactulose?  That should help with any "brain fog" she may be having.  You do need to keep a close eye on her in the NH, as they usually have just one doctor to cover all patients (basically writing orders for meds) and that doctor is not a specialist in liver disease.  I would suggest that you get Power of Attorney and Medical Surrogacy, if you don't already have it.  This way, you can communicate more effectively with the nursing staff and the doctor.  Because of privacy concerns, it is next to impossible to receive any information unless you have these things in place.

Fluid restriction is not unusual if a patient has ascites and edema; however, it is a real balancing act and it does sound like your mom wasn't getting enough fluid.

I know you will get a lot of support and info in this forum, so keep posting!


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


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 1/20/2009 4:25 AM (GMT -7)   
Sad Daughter

Just wanted to add my welcome to the forum. Connie is right that you or someone in your family needs medical power of attorney to be able to advocate for your mother. There could be many explanations for her slurred speech and lack of cooridination so advocating for more medical interventions is important.

Again welcome to the forum.

Lucy

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/20/2009 2:37 PM (GMT -7)   

Hello Sad Daugher and welcome to HealingWell.  So sorry that you are going through this with your mom. 

In answer to your question.......yes .....strokes are very possible with end stage liver disease....my husband started with seizures and eventually he had a mild stroke.  

Connie bumped up some real informative educational posts for liver disease.   Please read them over they are on this first page of the hep forum.   

Again welcome,  you have found the best forum on the net for well educated and very compationate people who are or have dealt with many forms of liver disease.........

thoughts and prayers..........


Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/20/2009 4:48 PM (GMT -7)   
Sad Daughter, I just wanted to take the time to welcome you to the forum and tell you how sorry I am that your mother suffers from this horrible disease. You have come to a great place for support. There are many people here that understand just what you are going through. Hang in there. It is a tough road.

I'll be praying for you.
Butterflythree
 
There is always hope!


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 1/22/2009 4:22 PM (GMT -7)   
Hello sad daughter and welcome to HealingWell. You have come to the right and tremendous compassion. Like you I suffered watching my mom deteriorate with chirrosis caused by hepatitis. Eventually she succumed to liver cancer. I can only imagine your frustration at this time as your mom is in a NH and not recieving the medical attention she needs. Connie is absolutely correct in advising you to get medical POA. I would like to suggest that you educate yourself as much as possible about her disease. At a time when you are comfortable with it you can request a conference with the Dr. at the NH. I would ask for his plan of action concerning her medical care. You can feel free to make a list of questions related to her ongoing care. Also, you have every right to request that the NH schedule an appointment with her hepatologist. You will have to make arrangements for transportation to and from the NH but there are transport companies available near most facilities.
As for your question concerning the possibility of your mom having a stroke the answer is "yes". The NH has has a responsibility to answer your questions and should definately send her to the hospital to be evaluated. I would reccommend that you be asertive in your conversations with the staff of the NH. I would ask to speak to the charge nurse first, explain to her the changes you see in your mom and propose that she be evaluated immediately. If the RN chooses not to follow thru then approach the DR. Don't take NO for an answer.
Be strong, be brave, and be your mom's advocate. Most importantly, be educated about her illness. That way no one can fool you about her care.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/22/2009 4:27 PM (GMT -7)   

Hi, Shelly!  Good to see you!  How are you doing?

Hugs,

 


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 1/23/2009 11:08 AM (GMT -7)   
Dear Shelly,
 
You said "Most importantly, be educated about her illness. That way no one can fool you about her care."   I've been reading on the forum since April or May of this year and it was some of your posts and others that pointed me in that direction!    I'm glad to see your name in print here again!  
 
Joan   

mo719
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 1/28/2009 5:36 PM (GMT -7)   
Hello Sad daughter, and welcome.  This site has been a life line to me, I'm new myself.  Everyone here has good advice.  I wish I could say something that would bring you the comfort that you need, the only thing I can say is to read everything that you can on the disease, as well as all the comments on this site. Everyone has their own story, and everyone has some insight.  The pain you will feel as you go through this is the hardest, as well as the unanswered questions.  My husband had a wonderful IUC nurse who believed knowledge is power.  If we are aware and have knowledge it becomes slightly less frightening. I wish you peace of mind, and hope you have people to support you. Even though they have no idea what you are going through unless they have been there, they can at least give you and ear to hear you and a shoulder to cry on.  Be strong, find out what you can, there are anwers but NH are limited and not specialized. I would suggest getting copies of your mothers records, you may need a power of attorney to do that. You could call your local bar association and see if they have a list of attorney's who are doing probono(sp) work. Also, your church should you have one may have some connections.  Anway, I wish you well and will be on the site off and on. God bless.
mo
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