END STAGE LIVER DISEASE HELP

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BEACHYGIRL
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Date Joined Mar 2009
Total Posts : 30
   Posted 3/8/2009 1:22 PM (GMT -6)   
confused  My mother who is 64 and had an intracerebral hematoma (stroke) 20 years ago. 4 weeks ago, she was diagnosed with NASH. She has end stage liver disease. She has cirrhosis and liver failure. She has the portal vein thrombosis, a blood clot from liver to the spleen, bleeding esophageal varices (doctor said they are small), diabetes for years, has been hositalized twice in the last month for encepahalopathy, once level was 142, the next time it was 60. They got it down to 30. She had a bout with small volume ascites, no fluid was withdrawn. She has been anemic, has low platelet count, for at least 2 years. Last week she fell and had another stroke which landed her in a helicopter to a major hospital. The bleed stopped, they didn't do surgery this time. She is home and with my sister who has taken a 5 week leave of absence. We thought she was on her way out. She is on 30ml of Lactulose 3 times a day. The doctors say she could live many years with this. My sister and I are so confused as to how they can say this. Does it get much worse than this? We are confused as to how to proceed with her care. She has suffered so long with the stroke and diabetes. We don't want her to suffer any longer. She is right with God but not ready to leave this world. She thinks she has 5 years to live. My sister and I think it is less than a year maybe months. Are we wrong? I know God is the only one who knows when she'll go but please help us to understand what we should do.
Thanks, 
BEACHYGIRL

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 3/8/2009 3:50 PM (GMT -6)   

Hello, Beachygirl, and welcome to the forum.  I am so sorry your mother is so ill.  She certainly has had a lot to deal with.  The diabetes makes the liver disease even more difficult to handle.

So many people who come here want to know how long they or their loved ones have left.  That is something that is impossible to predict, as each person is an individual.  Liver disease is different in everyone.  Some people just give up, which I think affects their ability to cope and hang in there.  Your mother seems to want to live a little longer, which is a positive thing.

The best thing you can do is read our educational threads on ESLD and Death and Dying, as well as posts of others.  That will give you a better idea of what to expect.


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


BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/9/2009 11:30 AM (GMT -6)   
Thanks Hep93, I had a talk with Mom last night and she said she has accepted it and is right with God and she is ready whenever He is. She seemed at peace with it and it was a great relief to know I can talk to her about it now. We also talked about going to the hospital every time something happens. She doesn't want to be in and out of the hospital or have all those procedures that are available and prolong the inevitable. Thanks for your support. I am so glad this forum is here.
 

Post Edited (BEACHYGIRL) : 3/9/2009 7:44:39 PM (GMT-6)


BEACHYGIRL
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Date Joined Mar 2009
Total Posts : 30
   Posted 3/9/2009 8:37 PM (GMT -6)   
Mom went to the doctor today and he couldn't believe she made it through the stroke or that she had so many problems. (My sister sat down with him without my Mama present). I don't know why he didn't know of all her problems, he's been seeing her for almost 2 years and has all her records since her first stroke. Anyway, he said she probably doesn't have more than 6 months left and immediately called for home health help for my sister. He said the Home Health people could give us more of an idea of where we are with this disease. They are coming tomorrow. Mama doesn't want anyone around but my sister and I but we have to get someone to look at her with experienced eyes. She is losing control of her bladder. The doctor never said anything about what that meant. My sister said she couldn't believe it had only been 1 week since she got out of the hospital, it felt a lot longer. Sister needs help and I'm glad we are getting the extra help. I go over almost every night after my husband gets home to help with Mama and to give my sister a breather. Most of all, to spend time with Mama. We have always been very close. It is going to be hard to lose her. I think I am ready but today I'm real sad about it. My Mom and I are very much alike. My Mom and I have had such good times together. It's going to be hard to not have those laughs anymore. Well, I better go.

Post Edited (BEACHYGIRL) : 3/9/2009 7:44:53 PM (GMT-6)


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 3/9/2009 8:57 PM (GMT -6)   

Beachygirl, Home Health will be very helpful.  Also, when the doctor thinks your mom has 6 mos. or less left, Hospice can be called in for even more help.

I'm glad that you were able to talk to the doctor.  Physicians are so busy and have such large patient loads these days that they sometimes don't have a chance to go over patient records and reports, so it's good that you brought him up to date.

Feel free to continue to post and let us know how things are going.

 


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


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 3/10/2009 7:38 PM (GMT -6)   
Hi Beachygirl, Hang in there. Just take it one day at a time.

Toolost

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/10/2009 11:11 PM (GMT -6)   

Hello Beachygirl,  I just wanted add my welcome to HealingWell. I am so sorry that your family has to go through this. 

Hospice is a wonderful organization.  Between this forum and Hospice  I was able to get through a very difficult period of my life in one piece.  I honestly don't think that I could have managed it without either one of them.

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.


BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/11/2009 12:52 PM (GMT -6)   
Thank you all for the support. Home Health came and Mama enjoyed having them there. She is stronger now. Not eating much but that's ok. I don't know all the details yet but will keep you posted. THanks again for being there for us. I'm glad I found this site.
BEACHYGIRL
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


BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/20/2009 7:59 AM (GMT -6)   
confused  Hey there,
Mama was doing fine until last night. She got dizzy and extremely sleepy all of a sudden. She was too weak to get up by herself so we got her to the bathroom and put her to bed. She went to sleep right away. We are wondering if she had a stroke or something. Any ideas? She doesn't want to go to the hospital anymore.
Beachgirl

BEACHYGIRL


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 3/20/2009 11:22 AM (GMT -6)   

Hi Beachygirl,  Is one side of her weaker than the other?...Is her smile or frown lop sided?...Strokes usually affect one side only. 

My husband started having focal seizures first in June of 2006 after a chemoembulazation and then he had a minor stroke in November  of 2006.  They put him Keppra to keep the seizures under control. He had numerous blood transfusions during the last 16 months of his life.  Not only did he have Hep C (undetectable though), he had cirrhosis and liver cancer also.  He passed near the end of April 2007. 

Hang in there........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.


AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 3/20/2009 3:09 PM (GMT -6)   
Hello everyone,

My name is Amee, and my mother-in-law, has recently been diagnosed with ESLD. She had 3 liters of fluid pulled form her abdomen, and it was infected. She is very swollen in her legs, feet, and abdomen.

On March 4th, my husband and I found her unresponsive in her bathroom. We first thought that she was dead just from the way she looked. She was blue, cold and stiff. I felt for a pulse, and realised she was still breathing. My husband called 911. She was in the hospital for two weeks. She has hepatic Encephalopathy. She came home this past Wednesday. She is on laculose twice a day. Along with a blood pressure medication as she also has portal hypertention. She is also taking levaquin for the infection once a week, along with some vitamins, and some medication for circulation, as well as a water pill.

My husband and I are on the same page, and understand that this is a very serious condition. However one of my husbands older brothers, is not understanding at all. He want's to play doctor and tell her not to take certian medications such as the lactulose and the blood pressure medication. I have a huge problem with this because, number one, I've seen what not taking you medication properly can do. My father died a terrible death because he refused to take the medications. Secondly, she lives with me and my husband and our 3 year old son. I don't want my son to see his grandma suffer like I watche my father.

How can we get the rest of the family on board. He keeps telling the doctors that they are wrong, when we've already had 5 seperate doctors say the same thing. She is now in renal failure. I'm not sure how much longer she can hold out. She has suffered with depression and I see it in her eyes, that she thinks it is easier to give up than to fight.

I just need some support. I don't mind to help her, and cook, clean all that is easy. I just want and need her family on the same page, and understand that we all want her to get better and live and see her grand chilren grow up and start lives of their own.

Any help would be great and welcomed.

BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/20/2009 4:18 PM (GMT -6)   
Dearest Amee,
You are really going through a lot. 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. I know more about Cirrhosis of the Liver, Hepatic Encephalopathy, stroke (my Mom has had two), etc. than her primary doc. He was looking up the stuff I was suggesting in his blackberry during the visit. The book has really helped me and my sister be able to take care of Mama and watch for the signs of deterioration. I told my Mama, the Lactulose is saving her life right now. She has a good day or two then a bad day. It is definitely frustrating to watch. I have 5 children ages 2-13 years old and homeschool the 3 oldest. My Mother lives with my sister but I go over and see her every night because I want to spend as much time with her as I can. Nothing else is more important right now. I am and have always been very close to her. My children see her as often as I can handle getting them over there. That's the most important thing and the best medicine. I don't think your child will be scarred if she sees grandma like this. I don't remember anything at 3 years old. Your child is what is keeping her alive probably. Children give people a reason to live. Just give that book to your brother-in-law and have him read it. He may read it just so he can prove himself right, only to find out he's trying to rush her exit out of this world. (Maybe he is). If I were you, I would call Hospice in now and get that set up so she doesn't have to go through the pain your father went through. If she has given up (and I bet that is just the encephalopathy making her look that way, my mother was the same way, the doctor put her on Paxil before we realized it was the ammonia level making her act that way), Hospice can make it so much more comfortable and she can pass painlessly and peacefully surrounded by love which is what we all wish for ourselves and especially our Mama. I am just another daughter dealing with my Mother's ESLD, I am not a doctor. I hope you take these as suggestions only. I don't know your specific situation so I am only responding to what you wrote. You came to the right place for support. I have spent many hours obessively reading posts from this site and the resources from this site. I've also searched the internet to death for information. We do have to be their "doctors". My mother has so many, we have to give each doctor the whole story at each visit so they are all on the same page. God bless you. You may want to start your own thread but mine is current as I am going through the same thing you are. It doesn't bother me. Keep in touch.
BEACHYGIRL

BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/20/2009 4:22 PM (GMT -6)   
Dear Pink Grandma,
I don't know if she had another stroke. The last one didn't seem like she did either because she had the identical one she had 20 years ago which left her permanently paralyzed on her right side. Anyway, thanks for the help. She is fine this morning.
BEACHYGIRL
BEACHYGIRL


AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 3/21/2009 8:04 PM (GMT -6)   
BEACHYGIRL,

Thank you very very much. It really helps to know that there are people going thur the same things. It's not so lonley now. I am worried. I love her very much, although we have had a rocky relationship for a few years. Mostly because I kept pushing her to go to the doctor and seek help for the drinking problem "that she didn't have". All in all, I can sleep at night knowing that I did everything that I could to help her, even if it made her angry with me from time to time. I just hope that her sons will see that this too.

Today, all of her sons were over at our house to visit with her. She is very strong willed and wanted to look like she was doing better than she is, as she didn't want to hear the middle son, yell at her about how she is letting herself go. It's hard to hear him speak to his mother in such a way, especially when he is making her dinner that is WAY TOO SALTY!!! He made a salt fish dish that is one of their favorite dishes. They are from Guyana south america, and they like salty foods. So do I but if my legs and feet were swollen and look like they could burst open at any moment, I wouldn't eat it no matter how mad my son would get. But did anyone listen to me... nope, she ate it.

I don't know if the transplant team will consider her if she doesn't adhear to the low salt, and low fat diet that she needs. It's a long hard road ahead, and I will definately check out that book.

Again thanks!
Amee

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/23/2009 7:55 PM (GMT -6)   

 

BeachyGirl,

 

Don’t be too hard on her son (your brother).  Many people don’t care for conventional wisdom.  They would prefer to live freely—especially if the consequences are not their own.  Don’t concern yourself with that which you cannot control.  You will just stress yourself out. 

 

If your Mom gets too much salt on occasion, it probably won’t make too much of a difference.  However, if she gets used to a low-salt diet, she won’t be able to eat salty foods.  The salt will overpower her taste-buds and she will not care for it.  She probably ate the fish to please her son. 

 

The most important recommendations for someone with NASH are to:

 

  • reduce their weight (if obese or overweight)
  • follow a balanced and healthy diet
  • increase physical activity
  • avoid alcohol
  • avoid unnecessary medications

 

Your Mom is right with God.  If she doesn’t want to cooperate, it’s out of your hands.  Many people defy medical logic and survive on the simple “will to live”.  I’ve witnessed this myself.  Given the condition of my husband’s liver at the time he was transplanted, I have no other explanation other than his will to survive.  I pushed him constantly, but knew him well enough to know the difference between will and encephalopathy. 

 

Be careful not to push your Mom away.  Try to make her understand where you are coming from.  Love her as she is and don’t hold her back from living!  But try to keep her in a healthy range. 

 

Love,

 

Penny

 


BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/23/2009 9:38 PM (GMT -6)   
sad  Mama is having a hard last few days. She was sleepy a couple of days ago all day. Now she has all over body pain. She says she hurts in her back, butt, legs, knee. Her legs are drawing up. She is very weak. She can't stand up by herself so we help stand her up and pivot and seat her. (She is paralyzed on the right side from the stroke 20 yrs. ago)She has been running a low fever. 100.4 last night and 99 today which is normal for her. I called the doctor today because she was crying from the pain. I gave her tylenol 3 and waited for the doc's call. I told the doc that she didn't want to go back to the hospital. She really doesn't want to go back! He is giving Hospice a call tomorrow morning and giving her a pain patch to wear that she can change every 3 days. It feels like the end one hour, then the next, it doesn't. Rollercoaster ride indeed! I am so confused. It's hard to tell what is happening. Who knows what is going on now. Time will tell. pray for her and us.
 
BEACHYGIRL


BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/24/2009 7:05 AM (GMT -6)   
Dear Penny,

Your last post is directed at Amee whose mother-in-law is ill.

God Bless.
BEACHYGIRL


AmeeP
Regular Member


Date Joined Mar 2009
Total Posts : 71
   Posted 3/24/2009 10:04 AM (GMT -6)   
Beachygirl,

I agree, a roller coaster of a ride, and I hate roller coasters. We are in the same boat. One hour she seems so close to the end, and the next she is smilling and talking, only to cry form the pain the next. I'm stretched so thin these days, and the strain that this illness is putting on my family, marriage, and parenting is so difficult. I know that I'll get thru it, I always get thru it. I am beginning to think I am a magnet for drama. My whole life has been surrounded by it. I guess this is what I know best, in a way, but it still is hard to deal with. I cannot sleep at night and cannot tell you the last time I slept a solid night. I think that would make such a difference too.

Anyway. I am praying for you and your mama. You for the strenght, and you mama, to be free from the pain. God bless and take care of you too.

Amee

BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/24/2009 12:12 PM (GMT -6)   
Hey Amee,

You are so right. I also feel drawn to the drama. I want to be over there to be with Mama but I have the kids to deal with and they are driving me crazy today. I took them with me to get her pain patches and left them with my sister and Mama for a while to try to take her mind off of the pain and herself. My 2yr old always makes her smile and laugh. Mama is really in pain. The tylenol 3 isn't working this morning. She seems scared. Hopefully the pain patch will help some. It will take 8-12 hours to start working. We are supposed to change it every three days. I can also give her tylenol 3 with it until it starts working. Hospice is coming tomorrow for the interview. Then they will kick in which feels like such a relief just thinking about it. I feel helpless and so does my sister.

Sounds like to me, you need to go somewhere alone and get about 8-12 hours of uninterrupted sleep. Maybe a hotel for a night or friend's house. Wherever. Let someone else take over for a while. You are going to burn out. You're an angel taking such good care of her when her own kids can't or won't. She appreciates you even if she doesn't say it. She knows who has her best interest at heart. Hang in there and find some time to put your feet up with a good book and some good coffee or whatever you drink. Talk to you soon.
BEACHYGIRL


BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/25/2009 9:21 AM (GMT -6)   
Hey there,
Since the oxycodone wasn't working too well, Mama got a fentanyl patch (sp?) yesterday and she woke up itching above the waist last night. Could it be the patch? Her back and butt still hurts. She has a bony butt and it's bothering her. I think it may be the muscle wasting? She is confined to the wheelchair and hasn't been standing up by herself for a couple of weeks now. She is too weak. Hospice is coming over this morning to have the initial interview. I'll let you know how that goes.
BEACHYGIRL


BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/25/2009 3:02 PM (GMT -6)   
Hey,
Hospice came and they seem like a Godsend. They start coming tomorrow. I am so glad we called them.
BEACHYGIRL


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/25/2009 4:42 PM (GMT -6)   

Beachygirl, yes, the itching could be a reaction to the medication in the patch.  Were you told to put it in a different spot each time it's changed?  Otherwise, it can irritate the site it's on.

When Hospice comes again, ask them about a gel or air cushion for your mom's wheelchair.  It will give her a lot of relief. 


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


BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/26/2009 9:37 PM (GMT -6)   
Mama is using the air cushion in her chair now. The OT brought it. She got a bath today, which she loved. She is still in pain in her back and down her right side (paralyzed side). We just took her blood pressure and it was 110/45. The hospice nurse comes tomorrow and we'll talk to her about some things. cool She qualifies for a hospital bed with an air mattress. I hope this makes her feel relaxed, at least. My sister and I already have plans on playing with it. It sounds fun. The air supposedly moves around to different pressure points? I have no idea what I'm talking about. Mama is in good spirits, just hurting.  Well, we gotta laugh. It's better than crying.
 
BEACHYGIRL


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/27/2009 1:32 AM (GMT -6)   
I'm glad your mom has an air cushion.  The air mattress will be much more comfortable for her.  When I was in a body cast for 3 wks. in the hospital, they gave me one (after I complained for over a week about how much I hurt) and it did make a difference.  I'm glad your mom is in your spirits and you all seem to be coping well.  Also happy you now have Hospice.  They really know what they are doing.

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


BEACHYGIRL
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 3/28/2009 7:39 AM (GMT -6)   
yeah  Mama got a hospital bed with an air mattress. She likes it. Hospice is wonderful. They ordered it yesterday morning and she got it yesterday afternoon. They rock! She doesn't like the morphine but we talked her into having some more last night. She only takes .25ml every 4 hours and she has the fentanyl patch on too. We do make fun of her because it makes her loopy but it is all in fun and she laughs too. My mother has a great sense of humor. She still has all over body pain and it hurts her to sit on the hard toilet seat so hospice is ordering her a cushioned one. Well, thanks for the support. Thanks also for thinking of us. I really enjoy the forum. You all are wonderful. I'm praying for all of you and your families too.
BEACHYGIRL

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