Liver Disease Grumbles

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Elizabeth
New Member


Date Joined Apr 2008
Total Posts : 5
   Posted 4/13/2008 4:44 PM (GMT -7)   
I inherited my mother two years ago with her liver disease and I honestly can't tell you what stage she's in what mess she's in, I can just selfishly bawl about the messes she makes when her ammonia levels go up and I don't know how to get her back to normalcy. She is also an insulin dependent diabetic and at times I feel like I'm battling wars with no weapons.
 
I have some questions for anyone who has answers and please forgive me if I sound callous.  I'm tired, I'm a single mom with three kids, one of which is one year old and not able to understand to stay out of grandmas boo boos and I was told she was coming up here because she didn't have long.  I don't want to put an expiration date on her, but I might need to make other arrangements and such.
 
I come from a more than likely model dysfunctional family so we're great at lying to eachother and saying yeah sure everything is fine, don't worry about it.  I am hoping someone can tell me, if the drs are telling me they don't understand how my mom has made it this long and she keeps having these spells of "wacky weed", sorry everyone I don't know what else to call the moments of insanity from high ammonia levels, hey moments of insanity from high ammonia levels...I just don't get much sleep because she wants to sleep all day and she's up at night.  She likes to roam and I'm always afraid of what she'll get into.  She's decided that she wants to run outside and use the potty, that's always interesting. 
 
What are some of the signs that the end is approaching if any...when you all say that the scores go up for a liver transplant does that mean that the condition is worsening???  I guess I never asked her drs all these questions because she chose to go dnr due to age and other factors, I didn't ask her about her choice I just accepted it, right now I sadly am so tired I hold my breath everytime they take her in.  I'm sorry to act to sound so cold, I know so many of you are fighting for family members and more time and your own lives, and I hope God hears and honors your prayer requests for His glory.  I am sadly just hoping for an out.
 
Take care and good night all!

Elizabeth
New Member


Date Joined Apr 2008
Total Posts : 5
   Posted 4/13/2008 7:11 PM (GMT -7)   
A diet of Low Iron...I have some confusing quesions why are they having her take vitron c? Exta iron? Is that something different?

I'm buying lactoluse by the case. Poor thing takes 30 ml 3 times a day, it looks like it's losing it's effect or she's not taking it right. I'm tired too, please write when you have the energy and time, I would love more info, knowledge is power. And if I can get some sleep too all the better, take care.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/13/2008 8:51 PM (GMT -7)   
Hello Elizabeth, and welcome to HealingWell. I am so sorry that you are going through this with your mom. Been there and done that with my husband.
I know how tired you must be with 3 children and care giving for you mother. Your feelings are normal giving your circumstances.
If in fact your mom is taking the lactulose 3x a day and it is still not working either she may have an infection or the end is near.
Take her temperature. If it is over her normal temp then she probably has an infection. But you have to know what her normal temp is. Now, my husband normal temp was 96.5 to 97.0. If it was at 98.6 he had a fever. Infections are very common to esld patients. Because they usually have been in and out of ER's several times it's not unusual for them to get a staph infection. Their immune systems are compromised so infections become very common.
Some doctors say low protein other say high protein. If her muscles are wasting is usually when they say high protein. Red meat seemed to create havoc with my husband's ammonia levels. He ended up not eating beef very much. Her doctor's should give her a dietary plan ....if not ask them.
Her doctors should be able to tell you what stage she is in. If not if you have time please read some of our old posts. I believe there is one by 1Shelly1 on stages.......... if not google "stages of liver disease" you can probably find what stage she is in with all the symptoms that she has.

Hang in there Elizabeth........come back any time. We have a very knowledgeable and compassionate group here. We are just a click away.

Take care and thoughts and prayers will be with you and your mom.
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.


Elizabeth
New Member


Date Joined Apr 2008
Total Posts : 5
   Posted 4/16/2008 3:02 PM (GMT -7)   
Okay now I'm more confused than ever. Mom was admitted to the hospital Sunday afternoon and I believe it was Monday they told me that her kidney function was going or is going. I am starting to get mixed up on details. On Tuesday night, she didn't know me but she knew she wanted to eat. I asked the nurse why she wasn't allowed to eat and they said that it would hurt her too much. Her oncologist said that I shouldn't be surprised if they called to say that she was gone. Okay...well then isn't it pretty silly to not allow her to eat what she wants and to just let her have pain medication to deal with it. I am not a medical person, I do know my mom loves to eat. They finally let her have food today...let's see it's Wednesday sooo like three days later. Thanks for the other information on stages, people are not returning my phone calls. I do know her rbc is really high her wbc is really low, her hemacrit is low, her spleen is enlarged and even while not getting food her sugar levels have been high. Sometimes I wish that drs and the other medical people would remember that for some of us we're in the dark and their advisements are just that advisements that the people who know her best should be the ones helping to make the decisions for her.Sorry these are my grumbles for the day.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40590
   Posted 4/16/2008 4:00 PM (GMT -7)   
Hi Elizabeth,

Though I don't understand a lot of this disease, I want you to know that you are in my thoughts and prayers. I hope that when the time comes that your mom goes peacefully and does not suffer.

I will be thinking of you,
hugs, Karen
  Moderator-Depression
 
fibromyalgia, Chronic fatigue, depression,allergies


Elizabeth
New Member


Date Joined Apr 2008
Total Posts : 5
   Posted 4/16/2008 7:14 PM (GMT -7)   
I hope that you don't have to learn about any of it through personal experience. Thank you for the kind thoughts and prayers. I am at the point that I hope she goes peacefully. It's not that it won't be hard but I know when we'll meet again.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40590
   Posted 4/16/2008 9:02 PM (GMT -7)   
I lost my sister to cirosis (sp) and a good friend to hepatitis C from agent orange. They both were young. In 40's and 50's. But they are both at peace now.

You will definately be together again someday. I believe in that.

My thoughts are with you.

Hugs, Karen
  Moderator-Depression
 
fibromyalgia, Chronic fatigue, depression,allergies


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/17/2008 8:16 PM (GMT -7)   
Elizabeth, you are entitled to any grumbles you want to express. Sometimes the medical community is remiss in explaining things and other times they really don't know the answer at all. I have always believed that when a person is facing the end of their life they should be able to eat anything they want to, or have pain medication when they want to. If your mom is in organ failure there isn't much that they can do at this point so I would let her eat whatever she wants to. When dealing with pshyscians ask what you want to ask and ask them to explain their answers to you. If they try to move on to something else simply tell them that you need more of an explanation. They should not have a problem with that at all.

 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."

 


Elizabeth
New Member


Date Joined Apr 2008
Total Posts : 5
   Posted 4/19/2008 8:32 PM (GMT -7)   
Shelly,
I guess the medical community forgets that some of us are coming into a disease with little or no knowledge. I read your stages on liver disease and was grateful to finally see something to guesstimate with. At this point, I can say we're at stage four. Friday morning, they removed my mom's iv after trying lactulose every hour and flagyl. She is still in a lot of pain and is bleeding internally and in pain. The last part is the hardest for me. I was given the option of withholding the pain medication and seeing if they could get her to rally some or let her have the pain meds knowing it would continue to mess up her liver more and ammonia levels. She has stopped eating and drinking. All she will do is suck on a sponge for some water. I in my entire life have never seen my mom in pain where she couldn't rally through it, but she isn't able to do this now. I opted to keep her comfortable, trying to keep in with her wishes on her DNR order and such. I can't make myself go and watch her wither away. She doesn't know me anymore, and I want to keep the memories of her laughing, and even laughing at herself for goofing and peeing on herself and such or getting silly on high ammonia levels and telling a really cute doctor how ugly he was. My hope is for all that are fighting to hang in there, my prayers are for you and your families for good tmes together and one day more options will exist to fight this. For those of you waiting for livers, don't lose hope. Even when you lose days and find out later you did something silly, laugh it off and let it be your own family joke. When my mom's ammonia levels were up, she would cuss at me and call me names that she never called me. In some ways it stung because all I would be doing would be cleaning her up or getting her to a safe place where she couldn't hurt herself. But I won't let that or anything else steal my joy. We laughed at some of the dumb things that happened, and we've cried at the frustrations too. Enjoy you day, your hour, your minute or your second, it doesn't matter...we get some pretty special moments in life and those are the things that are important to remember and pass on.

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/20/2008 6:11 AM (GMT -7)   
Elizabeth, I am so sorry. I know how horrible all this is first hand as I went thru it too with my mom as have many other members on this forum. I got kinda whimmpy reading your post as I too watched in horror as my precious mother slipped away from us. I agree with you 100%.........keep her pain free. We are selfish creatures by nature and we want to keep our loved ones with us for as long as possible. That is the normal course of events. But...we have to remove ourselves from our own feelings and do what is best for those that we love and that is to keep them as painfree as possible. Telling them that it is OK to let go is also very difficult because we don't want them to. We want them to fight when they just can't fight anymore. My thoughts and prayers are with you and I want you to know that you are a wonderful daughter and your mom knows that and appreciates all that you've done for her. Any peace I have now is knowing that I will see my mom on the other side someday. It's a journey we will all face and I for one wanted to be with her in her last moments here on earth. I held her hand, kissed it many times and told her how much I loved her. I prayed outloud and recited bible verses to her. It was the hardest thing I have ever done but I have no regrets. GOD Bless you, your mom, and your family. He hears your prayers.
 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."

 

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