END STAGE LIVER DISEASE HELP

Beachy, isn't Hospice grand?  I wish more people would avail themselves of this service sooner.  So glad to hear that these small things they've implemented are making your mom more comfortable.

Lvsedona, welcome to the forum!  I am sorry that your sister-in-law is suffering with this disease.  You might wan't to start a new topic to introduce yourself to others and your situation, so members won't miss your post.  Instructions on how to do so are in the thread to new members.

Your SIL's confusion could be from elevated ammonia levels (common with ESLD.)  Is she taking Lactulose?  Also, is she still drinking?  She would have to be verifiably sober in an alcoholism treatment program such as AA, or in alcoholic counseling, for 6 continuous months before she would be considered for a transplant.  If she has stopped drinking, I suggest she start going to AA NOW.

As to the ascites and edema, she should be on diuretics.  Be sure you know all the medications she should be taking when she comes home.  And please do let us know how it goes.

Hey,
Mama had a really bad day. She is very sleepy, not eating much, only had 1 bowel movement, sluggish. She has a little temp. 100.4. For the first time in a week, she went from 9:30am to 1:15am without any pain killers. She also seems to be having little siezures but I don't know. She will be asleep in her wheelchair and her head goes back and her leg draws. Her speech is slurring so I don't know if it is the ammonia level or a stroke or a seizure. With my mom, it's always hard to tell. SHe has the neurological problems as well. I know her ammonia levels are high. Hopefully, tomorrow will be better. If it isn't, we are ready to see her through this because we love her and don't want her to suffer anymore.

Beachygirl, I can only echo what Butterfly said.  Our thoughts are with you and your family.

Lvsedona, Butterfly is correct about hep C not being a reason to deny transplant.  In fact, it is the leading cause of liver transplants.  Lifestyle is another thing--not what she has done in the past, but what she is doing now.  I explained that in my original post.  Of course, recent or current illicit drug use would also fall into that category.

Beachygirl wrote:

I found the "Bible of Liver Disease". The book is called Dr.Melissa Palmer's Guide to Hepatitis and Liver Disease by Melissa Palmer, M.D. If you have time, read it and you'll understand the fight you're up against with this horrible disease.

Beachy, thanks so much for recommending this book.  I ordered it and received it yesterday.  I was up late reading parts of it.  SO much info, all in one place.  Of course, there have been a few advances since it was written (new treatments for liver cancer and combo treatment for hep C being standard now, for example.)  However, the overall physiology and progression of liver disease, its signs and symptoms, treatment, etc., are all there.  I liked the section on alternative treatments.  Lots of herbs are potentially toxic to the liver...especially to an already damaged one.  So I wish people would be really careful in taking supplements without their doctor's approval.

I recommend this book for everyone on this forum.  I bought it online at alibris.com, but found it even cheaper at half.com.

FYI: I read the revised 2004 edition of: Dr. Melissa Palmer's Guide To Hepatitis and Liver Disease

Beachy, thanks for the update.  I'm so sorry that your MIL is not doing well.  How often is Hospice there?  I believe you have called them in, correct?  There is also a suppository form of morphine if she gets to the point where she can't swallow.

Take care and continue to keep us posted.

It's good to hear this, Beachy!  Thanks for the update!

Hey guys, I have not posted anything in a while. Mama has been on a year long rollercoaster ride. I left my husband and took my 5 children with me last May. My husband and I are in a huge, expensive and ridiculous custody battle. Nevertheless, the kids and I are back in the marital home since September 1 and 4 days after the move, my mother came to live with the children and me. She was living with my sister but she started working overnights so I had to take Mom in with me. My sister has also moved in with someone else and we are subletting out her and Mom's townhouse until July. Mama is much, much better off here with me and the children. We have her in my bedroom with me on the top floor with a view of the mountains and I have a huge master bath, bedroom and loft area that I turned into a little den for her that she can roll around in. She has an aide for 12 hours a day. Without the aide being here, I couldn't make it. Too much to take care of us as my children are 3,5,10,13,14 years old. I also do in home daycare. I settled with my husband the night before the custody trial and one of the terms was Mama was to be out of the marital home in 30 days or less.  Well, that hasn't come to light yet as she is a medicare recipient and will have to wait for a "medicare bed". She is on the waiting lists for 3 homes. She is only 65 and it is unbelievable we have to put a 65 year young woman in a nursing home. Of course, he is appealing it to the circuit court and still pursuing full custody and possession of the home. He wants my mother out so he can continue his mission of getting me out. Narcissist! Enough said.

Anyway. On to Mama. She is way out of it. She is having all over body pain. She is paranoid. Her belly is swollen. We have to feed her or she tries to eat the plate or napkin or whatever. It has been very sad and frustrating this past year watching her go through all this. Everyday is something different. We pray for good days. The good thing is she just received the sacraments from the Catholic Church. We don't have hospice anymore. We are just doing comfort care now. I'll write more later. It's nice to be back. Using new name since I changed my email and couldn't remember my password so now I am ncbeachygirl.

 

Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!"

Life may not be the party we hoped for, but while we are here, we might as well dance:)

BEACHYGIRL