New Member Mom with Liver Failure

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DDLee
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/16/2010 10:30 AM (GMT -7)   
Hi Everyone,
 
So I am new to this site, new to chatting in general, and new to my mothers illness.  I am going to her doctor's appointment today and I hope to learn some new things.  Two years ago she went to the hospital for fatty liver disease and we did not know what that was.  My mom told me it was hereditary(sorry if I miss spelled it).  At that point she had been living with my brother and things with them were not going well.  My great aunt and my grandma talked to me about getting power of attorney and medical power of attorney for her.  My mom and I talked about it and got those two things in place.  This last December she got really sick and when I went to see her 2 days before Christmas I walked into her house and her stomache was very distended.  I took her into the emergency room the next day and they kept her for 6 days.  That is when I first learned that she had been drinking.  There were so many signs and I think I was in denial as much as she was.  My husband had even asked me a few months before if she had been drinking and I told him no way.  The doctors told me long term prognosis is not good.  But they would not be any more clear than that.  I took her back to the ER for the ascites and they drained 8 litres from her.  Now it  is a week later and they may have to do it again already.  How do I get someone to tell me what we are looking at and what I should be watching for.  She has lost coordination in her hands, falls easily, has the spider veins in her face, she has lost muscle and gets confused easily.  I have no one else to help me and I do not no what I am doing.  I have read some things on the internet.  Does anyone have any thoughts or suggestions on what questions I should ask or how to get the answeres I need?  I was so greatful to come across this site.  I hope I did not take up too much space.  Thank you for listening.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/16/2010 12:42 PM (GMT -7)   
DDLee, hello, and welcome to the forum.  I am glad you found us, though sorry for the reason you had to.
 
If you will read some of the other posts here, particularly regarding alcohol and liver disease, you will learn a lot.  I also suggest you read the info in the folder Hepatitis Resources at the top of the forum page.  You will get some of your questions answered there.
 
Fatty liver disease is often caused by alcoholism.  My father had it, but it wasn't known until an autopsy at his death.  He was a secretive drinker.  Has your mom stopped drinking now?  Has anything been said about her being evaluated for a transplant?  If not, it's possibly because of her drinking.  If the liver disease is caused by alcohol, she will need 6 months of documented attendance at AA or alcohol counseling, depending on the transplant center, before they will even evaluate her for transplant.  It is crucial that she not drink anymore.
 
Some of the symptoms she is having reflect end-stage liver disease.  The confusion and lack of coordination are likely from a buildup of ammonia in her brain.  This happens when the liver isn't working properly.  It can also be caused by alcohol abuse, which causes irreversible brain damage.  Lactulose is usually prescribed for encephalopathy.  Do a search on here and you will find a lot of info on this.  (The search function is at the top of the page.  Type in encephalopathy or Lactulose and hit the return or "go" key.)
 
You definitely did the right thing in getting POW and MPOA.  This will enable you to make decisions on her behalf and to obtain her medical records.
 
When you meet with her doctor, ask about diuretics if she is not already on any.  This might help with the ascites.  I say "might" because she is already at the stage of needing draining.  She should also be following a no-salt or very low salt diet.  Also, eliminate beef from her diet and increase fruits and veggies (fresh or frozen.)
 
As I said previously, you will find a lot of information if you will just do some reading on this forum.  If you have any other questions, feel free to ask (we don't have a space limit.  ;)  )  You will also receive a lot of support from the wonderful people here. 
 
Let us know how her doctor visit goes and what he says.  BTW, she should be seeing a hepatologist (liver specialist.)
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 2/16/2010 12:49 PM (GMT -7)   
i agree about diruetics(sp) and maybe lactulose if her liver is bad to keep ammonia down. make she takes notes as liver disease causes short term memory loss. also get her to get her medical records and keep her labs and check them to note changes.

The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 2/16/2010 6:51 PM (GMT -7)   
DDLee,

As a caregiver also, I can tell you that you have found the best place in the world for support and wisdom.

Connie, Pink Grandma & Rick (Timeless) will soon be your best friends, and people like worriedgirl are also amazing sources of support and understanding.

Please continue with this forum and do not be shy about posting your feelings and sharing with us all.

There is a long and difficult road ahead for us all, but believe me when I say that you have found a nest of Angels here.

With love & light,

Rob

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/16/2010 9:09 PM (GMT -7)   
Hi DDLee and welcome. So sorry about your mom. But glad you found us. As you can see we have lot's of wonderful members who are full of knowledge and compassion. Hopefully by now you have been able to read some of our older posts and our educational thread. I know that it is scary to read some of the things but knowledge is power. It's better to know your enemy so that steps can be taken to slay the dragon.

I myself, and others have learned so much more about liver disease here, than any of my husband's umpteen doctors ever told us. I had to learn most things they happened, as I didn't find this site until about 5 months before my husband died. But it was a life saver for me. Don't know what I would have done or where I would be now if it wasn't for this forum and the wonderful members.

Take care......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.


DDLee
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/16/2010 11:32 PM (GMT -7)   
  Hello Pinkgrandma, Rob, Worriedgirl, and Hep93-
 
Okay I learned a lot today.  She is on diuretics but after seeing her today they are uping the mg that she takes.  She will go back in on Friday to have her abdomin drained again.  They are looking at puting her on lactulose and the doctor is talking to the specialist about puting a TIPS in but they want to talk about the risks first.  Her MELD count is 12 but her physical appearance is much worse.  So even the doctor said that it was pretty confusing for her.  I was able to get her to be pretty honest with me.  I think as much as she can.  The doc said that she doesn't really fit on any chart completly because she has all but 2 symptoms of stage four, but blood work from last week says she should not be where she is physically.  They took new blood work today and will be contacting me tomorrow with the results.  They have tried to get my mom to have hospice come in but she is not having any of that.  I knew that would happen so no real suprise there.  Just to give you a better idea of what is going on in her life, she was diagnosed with bi-polar and agoraphopia years ago as well.  My mom has struggled for many years and has always felt her lif was a prison sentence.  She told the doctor today that she did not have a death wish but she would not fight it.  She is set on not following anything of the suggestions, except for the not drinking.  She says that she has not had a drink since I took her in on the 23rd of December.  She refuses to go to any rehab and I know I can not force her to go.  She knows she can not get on a donar list if she does not go to rehab but does not want to be on one anyway.  So, I just want to help her the best way possible to make it as painless as I can.  I was angry for about a month, but I got over the anger and reading the previous posts has been so wonderful.  I would not wish this on my worst enemy let alone someone I love.  Her doctor also said that she is setting up an appointment with a doctor in our area that help patients deal with the end stages of their life, hospice, medicare and organizing medical stuff I guess.  I will let you know what else I find out.  I will also be reading what you all have to say.
As far as me personaly I am feeling kind of numb.  Thank God for my husband, he has been very supportive!
 
Thank you thank you thank you!!!!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/17/2010 11:08 AM (GMT -7)   
DDLee, thanks for updating us on your mom.  My labs never reflect how I'm actually doing, either.  I guess some people are like that.  It's a shame that your mom doesn't want to fight for her life and do what's necessary for a transplant, but that is her right as a human being, to choose treatment or not.   Do you think that she has really stopped drinking and can stay sober on her own? 
 
Lactulose is pretty nasty stuff and she probably won't want to take it.  If that is the case, or even before the doctor prescribes it, you might ask about Kristalose instead.  One of our members says his wife is willing to take that as it is tasteless mixed with water.
 
It's good to hear that your husband is being supportive.  I know this is a rough time for you.  I will keep you in my thoughts.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 2/17/2010 4:49 PM (GMT -7)   
just to let you know if you want to talk or an ear i have my email and my yahoo addy on t here. i know what its like cause i was a caretaker to my mom who had hep c, cirrhosis and was a alcoholic
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


DDLee
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/17/2010 8:01 PM (GMT -7)   
Hi Everyone,
 
Things were a little more rough today for me, but good for my mom.  She seemed healthier today and fiesty.   I set some doctor appointements but she did not like the time I set so I called and set different times for her.  Now instead of doing them one day she goes on two days.  She did not like that either.  I had to giggle because the next thing she said was...."I knew this would happen.  Now I have to go to more doctor's appointments don't I?"  I could only think well yeah.  The Doctor asked how do we get her to follow the diet restrictions.  I told her not to keep telling her she would die quicker by not eating right but she would have to go to more doctor visits due to her bad health.  She thought that was a pretty good idea.  At least she can help herself be in less pain.  I will ask about the Kristalose and hopefully that will help too.  Thank you, you guys are great.  It feels good to say uhghh.  Just thought I would get that out real quick.confused

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/17/2010 9:01 PM (GMT -7)   

"It feels good to say uhghh."

Anytime, DD.  smilewinkgrin

Good on you for making the appts.  Now we'll see if she keeps them.   wink

Hugs,

Connie


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


DDLee
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/17/2010 11:01 PM (GMT -7)   
 
Yeah, no kidding.  I am crossing my fingers and praying. 

DDLee
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/21/2010 11:17 PM (GMT -7)   
 
Things have been interesting over the weekend.  My mom tells me about conversations that are not happening.  Her and my grandfather talked this morning and she said that  my grandma told my grandpa she is dying, they have not spoken in two years.  I talked to both, my grandma and grandpa and they say they have not spoken to one another.  They also said that she was kind of weird when they talked to her too.  I am trying to plan for things but not real sure what to plan for.  Husband has the flue.  I hope he gets to feeling better soon. Poor guy!  Have a great week everyone! 

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 2/22/2010 5:52 AM (GMT -7)   
she is delusional which could mean her ammonia is high and should see a doctor
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/22/2010 3:36 PM (GMT -7)   

I agree with WG.  I hope you can get your mom to a doctor soon.  If things get worse, you may need to take her to an ER.

Hugs,

Connie


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


sd grandma
Regular Member


Date Joined Jan 2010
Total Posts : 23
   Posted 2/23/2010 4:25 PM (GMT -7)   
DDLEE, Iam new to this site as well and am glad to have found it! It helps to know your not insane or imagoning this horrible deal that has been dealt to us.

I, like your mom have made the decision not to make a transplant my main goal. My husband & I had long ago decided against certain life saving measures and this is one of them. I won't leave my family with the burden of medical bills for a chance to life 5 more years of which may not be much better than I am now. We have a lot of love and support within our families and have no regrets. Maybe things will change as time goes on but the odds would have to pretty good to change my mind. We are strive to make the best of what is here and now.

I am about half way thru ( I think) of stage 4. Assities hasn't recurred since Jan09 when they took 6 liters. I've been jaundice and delusional. Pain is an everyday thing. Health changes come on so rapidly it's hard to stay on top of them. Last 2 weeks.... blood pressure 170/110. Dvt"s are another concern since I've been hosptialized with those as well.

I quit drinking as well and have not gone to AA. My Dr (Mayo & Local) feel that I'll be given a choice of a transplant should it get as bad as it was.

The lactulose is nasty tuff' but works. Whenever I stop taking it my husband can tell and makes sure I'm on it. Seems he doesn't like it when I have conversations with people who are not there!!!!!!!

Your mom is lucky to have you! Keep smiling...she needs that more than anything!!!

DDLee
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/25/2010 10:58 AM (GMT -7)   
I took my mom back in.  She had 2 appts & a 3rd on Friday.  She does not want them helping her stay alive just not in pain.  She says that the dr appts make it worse.  The Apt she has on Friday is with a doctor that specializes in patients in the end stages of their life.  I think he will be more of what she is looking for.  He will help with pain management & how to get everthing organized.  They did more blood work & I have not gotten the results back yet.  They did change up her meds againg because one of her apts this week was to take more fluid off of her.  This is the 2nd time in 3 weeks.  They also did a chest xray, set an apt with a kidney dr & took her off the lasiks.  They think it is neg effecting her kidneys.  The ascities seems to be more of an issue than normal just because she can't keep anything down & the meds have not been maxed out.  She did get some meds for the nausia but it has not worked yet.  She has lost so much weight she is unrecognizable.  My poor grandma watched this happening to her son, they lost him 2 years ago, & now my mom.  Her boyfriend is not any help, he decided to start drinking again because there's no point now, he says.  He wants me to be sad for him.  I don't have that kind of energy.  I hope that does not sound mean.  I have way too many other things right now.  My grandparents can not deal with any prep stuff & my brother is legally bound to the house if you see what I am saying.  I would not ever ask my grandparents to have to do this again, if I am capable.  I have 3 kids of my own and a husband who is down with phnamonia(spelling???), & run a business with 7 emplys who also depnd on me.  My husband, kids, friends, & co-workers have all been amazing.  My energy is maxed out & I spend my remaining energy on my kids and husband.  You have to learn from adversity or you will find yourself making the same choices with the same results.  There is a reason for the saying "You live and you learn".  Thank you for listening.  This is just my take on what I am experiencing this week.  I am very grateful for knowing your experiences.  It helps me to understand.:-)

DTM
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 2/25/2010 11:47 AM (GMT -7)   
Hi DDLee,
 
I know you are completely overwhelmed and it feels like there is no end in sight.  Or at least that the end in sight is your mother's passing and that hurts.  My Dad has ESLD and as the eldest daughter and power of attorney I also have the lead role in making this a smooth transition for everyone.  We have engaged hospice so my mother is able to keep him at home but it is still difficult, I go over every day to make sure they both have eaten, that my Dad hasn't fallen and is laying on the floor or that other issues aren't going on.   I panic if I am not trying to control everything and at the end of the day I can't control everything.
 
My only advice as someone who has shed many tears and has read this forum up and down is to remember that you did not cause this and that you can not fix this.  Ask God for direction on what loving action you need to provide to your Mom and family but don't over-do, don't over commit and remember that you have your own health, your sanity and your own children to take care of.   
 
Good luck during this hard time and this is a good place to vent, ask questions, learn and to make new friends.  What I have loved is that I have received both sides from this site.  Those with the addictions (past and current) and illnesses and those who are the caregivers.  Listen and learn.
 
 
Take care,
 
Donna

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/25/2010 12:34 PM (GMT -7)   

Donna, thank you for a great post!

DDLee, you really cannot do it all, so please don't expect yourself to!  Is your mom against Hospice?  They would definitely make sure she is as pain free as possible, and also would provide nursing care and respite care in the home.  It's too bad your mom's partner has decided to drink again.  She needs for him to be sober.  It may also cause her to try to drink again, though she may not be able to hold it down.

Paracentesis or diuretics should be seen as comfort measures, as they do help relieve the pain and discomfort of ascites.  However, Hospice may not see it that way.  In particular, I think they will not allow paracentesis.  Perhaps it depends on the different hospices.  I don't have much experience or knowledge in that area.

Just do the best you can and what you feel you are able to do.  And don't beat yourself up for what you can't.

Big hugs,

Connie


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


DTM
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 2/26/2010 1:32 PM (GMT -7)   
To add to Connie's post.  My Dad is on Hospice and he is still getting the parencentisis when needed.  The hospice arranges for it and he goes to the hospital (where he went before hospice) to have it done.   It makes a big difference with his comfort level.  Where we have ran into trouble is the hospice nurse put a pain patch on him for some tailbone pain he had been having and it almost put him in a coma.  His liver couldn't handle it.  Mom ripped it off after 2 days and made sure he took his lactulose and now he is back to where he was.  Very scary for a while.

DDLee
New Member


Date Joined Feb 2010
Total Posts : 15
   Posted 2/27/2010 1:09 AM (GMT -7)   
Hi Again Everyon,
 
You can't see it but I had to write this twice.  O.K. we saw that dr I mentioned & she told him she does not want to do the dr apts anymore she wants to be comfortable but that is the only thing that she really wants for her remaining time here.  He told her what would happen if she kept going to the drs apt & taking medication. He told her what would happen if she stopped, including doing nothing or receiving help from hospice.  She was pretty set on no hospice until she talked to him.  He knew how to get her to listen & he listened to her.  I mean really listened.  He also was able to give us her new MELD score she went from having a .08% chance in the next 90 days to 25% two weeks later.  He did tell her that by choosing to not go to anymore dr visits or taking the meds that she would have less than 6 mos, she told him that is what she wanted.  There is a catheter type thing they can do to help drain off the ascites & that hospice will help take care of it.  So that was good news.  She did not like that they would be coming in at least once a week but she did like that it would be less than the dr visits.  Thank you all for the advice, I needed the reminder, I am being more careful of how I divide my time.  I will watch for things with her care and I have learned so much from this site sometimes I think I get more info from you experiences that I do the dr.  I have also learned a ton from nurses.  Thank god for nurses!  Talk to you in a few days.
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