end stage liver disease

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sher
New Member


Date Joined Oct 2003
Total Posts : 4
   Posted 10/25/2003 4:41 PM (GMT -6)   
My brother Marc is 48, and has just been diagnosed with end stage liver disease. His doctor said his 'window of opportunity' is closed. That there is nothing they can do for him. I refuse to believe this is true. He takes 30mg of lactulose 4 times a day, and lasix twice a day. the lasix is the water pill, that helps him get rid of water that he is retaining, but it's hard on the kidneys. The lactulose make him poop often, ridding his body of toxins his liver can't get rid of. He has gone into a coma 5 times.......his ammonia level has been up to 600....the norm is between 5-10. The ammonia causes him to go into a coma, because of proteins in his body....I can't remember the medical definitions for all of this........PLEASE if anyone has any info on this, or if you know of another site that can help .......PLEASE PLEASE EMAIL ME @ SherLB97@aol.com He doesn't eat any meat, and very low salt.......even so he still builds up proteins causing his ammonia to rise, then the swelling of the brain, then coma........

boo~baby
Regular Member


Date Joined Jan 2003
Total Posts : 213
   Posted 10/26/2003 4:51 PM (GMT -6)   
Sher,

I saw your post, and while I can't offer you any help, I just want you to know that I will be praying for you and your family. If you need to talk to people who are supportive and understanding, join us for a chat on the depression board sometime. You don't have to suffer with depression to join us. We'd be more than happy to have you. Please take care, I will pray for healing and peace.
Boo

Anxiety and Depression Moderator


mela
Veteran Member


Date Joined Jul 2003
Total Posts : 728
   Posted 12/2/2003 7:52 AM (GMT -6)   
Sher,Hi
If you don't mind me asking where is your brother retaining fluid at?
I'am haveing trouble a lot of fluid,I have CROHNS,RA and am fixing
to start seeing a lung DR.I feel for your Brother I know thar this has
got to be hard on him and you and family.I will pray for him and his
family.Tell him not to give up hope because god has ways of answering
our preyers.


Mela

gradyjandb
New Member


Date Joined Jan 2004
Total Posts : 2
   Posted 1/4/2004 1:08 PM (GMT -6)   

gradyjandb
New Member


Date Joined Jan 2004
Total Posts : 2
   Posted 1/4/2004 1:09 PM (GMT -6)   
sheri, my husband has just got out if a 8 day coma because of high amonnia levels. he is now home and not taking anything. he was told that if he did not drink alcohol and wated his diet he wolud not need the lactose. so far so good, but i am afraid it will pop up again. it came on real sudden. i will pray for your brother and my husband.

troyslisa
New Member


Date Joined Sep 2004
Total Posts : 16
   Posted 9/6/2004 10:56 AM (GMT -6)   
mela
i see your post that you have crohns do you have hep c also?
 


troyslisa
New Member


Date Joined Sep 2004
Total Posts : 16
   Posted 9/6/2004 10:57 AM (GMT -6)   
sher,
will be praying for your brother and family too and will put my prayer warriors on it too
 


carol jean
New Member


Date Joined Dec 2004
Total Posts : 2
   Posted 12/26/2004 10:20 PM (GMT -6)   
Any info re experience with family member(s) who have end stage liver disease and will not have liver transplant

carol jean
New Member


Date Joined Dec 2004
Total Posts : 2
   Posted 12/26/2004 10:21 PM (GMT -6)   
Any info re experience with family member(s) who have end stage liver disease and will not have liver transplant

Moonwisp
New Member


Date Joined Jan 2005
Total Posts : 1
   Posted 1/3/2005 4:40 PM (GMT -6)   
SherLB97@aol.com said...
(he still builds up proteins causing his amonnia to rise".....he is in the end stages of liver disease")
HI,
 I too am looking for answers to questions re: end stages of PSC. Like Sherl, my younger brother is going through the changes in his amonnia levels. He just underwent having his colon taken out on Dec.13th, and at that time we did not know if he was strong enough to go through that surgery.
 
We are trying to be optimistic regarding his healing, and getting well enough to withstand a liver transplant in the coming months. Right now we are fighting against "hydroascites" which is basically causing and excess of fluids within his stomache area, and as Sherl said it has to due with his protein levels. They have gotten his amonnia levels down for now, but he remains without an appitite, and they have not regulated his bowels, nor been able to make him comfortable with out overdosing him on meds.  Does anyone have more information on these particular disease processes.
 
We do not know if we are expecting too much to hope that he will be ready for the surgery,as he is extremely weak at this time. We have been told he too could go into a coma before getting his liver as he needs the whole thing due to the much needed bile duct. Thanks, for any help in advance. Moonwisp confused

WEFORGIVEN
New Member


Date Joined Jan 2005
Total Posts : 2
   Posted 1/13/2005 9:02 AM (GMT -6)   

Has your brother considered a liver transplant? My brother in law just had one he is doing great.

 


sher
New Member


Date Joined Oct 2003
Total Posts : 4
   Posted 1/24/2005 10:33 PM (GMT -6)   
 I wanted to thank you all for your caring replies. My brother Marc died 5 days after I sent this post. October 30, 2003. Even when the doctor's said it was the end I could not believe this. Marc was so sick, and in so much pain. I know God took him home because he didn't want to see his son in so much pain!! There were things that could have been done. But, we didn't know the right people, nor did we have the  money!! The red tape to get him on a donor list was horrendous!!
Marc went up north to visit his ex wife...  he went into a coma there, and she gave the doctor's a DNR order. She had NO RIGHT to do that, I was his Power of Attorney. Marc wanted to here for the holidays!! Before I could get there he died in the hospital alone!!! The plan was for him to be at home with family, friends, and Hospice , when the time came.....I grieved terribly over this, and still hurt over it!! My son said to me....Mom, maybe Uncle Marc went away to die, because you wouldn't let him!!
He was my little brother, and I couldn't save him!! I guess God had other plans!!
God bless you all, and your wonderful families!!
Sher

AJustiniani
New Member


Date Joined May 2005
Total Posts : 1
   Posted 5/6/2005 9:22 AM (GMT -6)   
Any one that has info on "end stage liver disease" HELP. I do not know what to do or say to my father. He is the hospital again and not doing very good. I am getting scard. We are waiting to talk to the doctor and find out what is next. How long he has got. He dose not want the liver transplant. So we are all just not sure what to expect. Or I guess we do but want to hear something defferent. He also was in a come because of the amonia leves being so high. They giving him blood transfutions and the blood is not staying any more. They have put 6 of the in 2 days and only 2 stayed in the body and when they check again it is going also. So what do I do??? Any one else that has gone thru this please talk to me. We have know he is going to die but what all happens???
 
Ajustiniani

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 6/16/2005 5:30 PM (GMT -6)   
Ajustiniani -

I spent a year caring for my fiance, with ESLD. We modified his diet, dosed with lactulose, went for transplant evaluation. I'll try to answer any questions that I can.

No one can tell you how long someone has. They can respond well or not respond well to treatment from day to day. It's critical that your father take his lactulose - we were megadosing toward the end (right before transplant) just to keep him sane. Mark was in a coma, as well, before we learned how critical this medication is. The lasix and spironolactone are also very important - he needs to take both. One raises potassium and the other lowers it, which keeps down those complications.

Are they giving your father Epoetin injections? It helps his body produce red blood cells. What about FFP and albumin? These help keep the fluids in the venous system, instead of in the abdomen (ascites) where it can cause problems with breathing, etc.

Do you know your father's MELD score? It's an indication, on a scale of 6 to 40, of how far the disease has advanced. Mark was at 37 when they transplanted him.

Is your father listed for transplant? If not, are the doctors trying to get him listed?

It's been a while since your last post. Hope all is well, though I know it probably isn't.

DJ

Lyd
New Member


Date Joined Jul 2005
Total Posts : 8
   Posted 7/18/2005 11:43 AM (GMT -6)   
Hi,
We just brought my mom home from the hospital and have called hospice. She has end stage liver disease. I need help in dealing with this. Anyone who has gone through this...does anyone have an idea of what she is going to go through and what to expect?
Thanks

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/18/2005 12:15 PM (GMT -6)   
Hello, Lyd.
 
I'm so sorry to hear about your mother.
 
I've been through end-stage liver disease with my fiance.  There are a lot of things that are going on in your mom's system. And a lot of things that you have to watch and help with.
 
We had Mark on hospice care, but had to take him off in order to get him listed for transplant.
 
First, some questions:  How much information do you have about your mother?  What have the doctors told you? How long ago was she diagnosed with ESLD? Do you know her MELD score? Have you seen any of her lab results? How much do you know about liver disease? Is she on the transplant list?
 
It's all going to seem overwhelming.  Diet is critical to management of your mother's condition, as are the medications that she needs to take every day.
 
If you can give me some more information, I can try to answer your questions and give you some tips that were given to me by doctors and nurse practitioners that helped care for my fiance.
 
I'm not a doctor and I don't pretend to have all of the answers. We got Mark through it, he was transplanted 06/28/04.
 
Hang in there.  (I have to run out for a bit, but I'll answer as soon as I get back.)
 
DJ

Lyd
New Member


Date Joined Jul 2005
Total Posts : 8
   Posted 7/19/2005 5:35 PM (GMT -6)   
Thanks for your reply!!!
 
I don't have a lot of information on my mom.  We had taken her to a liver transplant hospital to be assessed and put on the transplant list.  We were there for about 4 weeks and she gave up.  She said she was tired and wanted to go home.  She refused all medication and told doctors she wanted to go home. 
 
She has been home for about 4 days but she spends her days and nights asleep.  She does not want to eat and when she does she only has a couple of bits.  She refuses to take medication.  She has not taken the lactulose since last Wednesday. 
 
I want to know what to expect, how long will she be like this, and what the next step is goingt to be.  Hospice has been wonderful but they can not tell what is going to happen next.
 
If you have any information or if anyone has information on what her days will be like and what to look out for please, please let me know.  Thank you.

Lyd
New Member


Date Joined Jul 2005
Total Posts : 8
   Posted 7/20/2005 1:24 PM (GMT -6)   
Thank you for all of the information.
 
My mom was a little more disoriented last night.  She has been more and more asleep.  Her legs are getting weaker and she is having a harder time sitting down.  The hardest thing is that I think she has given up.  We are trying everything to get her to take her meds and to eat but she refuses.  She says she is ready to die. This is very hard because I see her deteriorating daily and every moment. 
 
I want to help her but I can't.  She will not allow us to do anyhting for her.  I am getting in a numb stage and only taking one thing at a time. 
 
I am going to talk to her doctor to get her lab results that way I can know how far she is in the disease. 
 
Once again thanks for the info.

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/20/2005 2:02 PM (GMT -6)   

Lyd,

The only thing that I can say is:  What would you do if she were your child and refused to take medication that you knew she needed? 

Sometimes we have to parent our parents, and spouses.  I remember many, many times that I had to raise my voice, get very tough, to reach Mark.  It's a difficult situation. They don't feel well, so they don't want to deal with anything; but, getting a little food and medication in them makes it easier to get a little food and medication in them.
 
The other option, because this disease will kill her if she doesn't take care of herself, is to have her re-admitted to the hospital.
 
I would also recommend that someone in the family be given Medical Power of Attorney. When she can't make rational decisions about her care, a family member can.
 
God Bless. I'm here if you have any more questions, or just need to talk.
 
 


DJ

Post Edited (DesertJules) : 7/20/2005 2:08:59 PM (GMT-6)


Lyd
New Member


Date Joined Jul 2005
Total Posts : 8
   Posted 7/20/2005 2:24 PM (GMT -6)   
Thanks, I needed to hear that.  I am going to try and do anything I can for her.  The thing I have to face is that
Hospice has told us to let her rest.  If she does not want to eat or if she does not want to take her medication to let her. At this point they said it would make a difference....(unless she still wanted to live and get a transplant....which she doesn't).
 
My biggest problem is that I don't want to see her suffer.  She has gone through so much that she does not deserve to be in any more pain. 
 
How is your fiance doing???

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/20/2005 3:17 PM (GMT -6)   
Be careful how you interpret what the home care nurses are telling you.  Hospice is about comfort care for terminal patients. Their goal is keeping your mother calm, comfortable, and unstressed while she waits to die.  Don't take their advice as the best way to treat your mother's condition. They aren't there to provide disease management; that comes from her doctors.
 
Mark is doing pretty well, especially when you consider that in May 2004 he started receiving hospice care and was not expected to live through August.  We had his family fly in twice between January and June, because the doctors were pretty sure he wasn't going to make it.  Thank heaven for stubbornness - although, there are still days that I could rap him in the head with a frying pan!  eyes   (Did I say that out loud?!)
 
It was rough, but sometimes (looking back) it was really funny.  One day, in January 2004, he was in-patient and his ammonia levels were sky-high. (I think it was the day that he went into the coma.)  He was disoriented, dizzy, and just a royal pain in the butt.  At one point, he decided that he needed to use the bathroom, so I helped him out of bed and started leading him to the bathroom.  (It helps if you understand that I'm 6' and weigh about 135lbs, dripping wet.  Mark is 6' and weighed 260+ at the time. Got the picture?)
 
Okay, we're staggering around the room, now. I have no idea who was leading whom, but Mark had to pee. He tried beside the standing wardrobe and I pulled him toward the bathroom, "No, honey. The bathroom's this way." He tried IN the standing wardrobe and I pushed him toward the bathroom, "NO, honey! This way!"  He tried behind the door to the room and I pulled him toward the bathroom, "NO HONEY!! THIS WAY!!" After, what seemed like HOURS of this, we finally got to the toilet, got him situated, and HE COULDN'T GO. yeah   I can only imagine what it looked like to his roommate - us staggering like drunks all over the room and Mark trying to get his pants down every time we stopped.
 
He was in horrible pain before the transplant. I used to rub his legs and feet, or put cool cloths on them, every day.  The doctors had to drain the fluid from his abdomen several times and he, to this day, has some pain from one of the procedures.  Now, with all of the side effects from the HepC treatment, he has a long list of pains and problems that changes every day. But we keep on keepin' on. His two youngest sons live with us now, so it's a three-ring circus!  I'm surrounded by testosterone!
 
Ya' gotta keep a sense of humor - otherwise, you're just sunk.
 
Cheers! Keep your head up - you've already seen your shoes and the best view is ahead of you!

DJ


Lyd
New Member


Date Joined Jul 2005
Total Posts : 8
   Posted 7/20/2005 5:15 PM (GMT -6)   

Wow, I'm glad that he is doing good. 

That is what makes is the hardest....what if we tried a little harder and she would make it. I just want to make sure she gets what she wants.  All she has eaten today has been jello.  She still has not taken any meds I am going to try and give her the meds tonight.  She has not had a bowel movement for two days now.  Do you know how long it takes for the amonia levels to go up. 

My mom has Hep C and was diagnosid with it in 2002, but she aquired it about 15 years ago.  In March of this year she started passing blood through the colon.  The had to do the TIPS procedure and this stopped the bleeding.  The doctors said she had cirrohsis in the liver.  She went home and was ok for about a month then she got very disoriented and that is when we started the Lactulose.  about 2 weeks later she started getting sicker and sicker.  That is when we took her to the transplant hospital and now she is at home.  So we have been dealing with this since March 2005.  It's hard but from what I can read is that you have been dealing with this for quit a while.  I just want to know how advanced her liver is and if she has long to live.  I am definitley going to get her blood work report.

Thanks


DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/20/2005 6:35 PM (GMT -6)   

Yup, we've been at this, in one form or another, for just over 2 years.

I don't want to sound hard, but your mother is probably not going to live.  (Never say never.) She can improve and feel better than she is now, but advanced liver disease is considered terminal.  Her best chance, in my opinion, is a liver transplant.  Everyone's job, right now, is to keep her as healthy as possible until that happens.

If she hasn't taken any meds and isn't having bowel movements, her ammonia levels are probably way too high right now.  Lactulose can be given as needed.  I would strongly recommend that you don't wait.  Mark was really good about taking it, so I didn't have to worry about getting it into him.
 
Can you mix it in her juice or soda?  Mark suggested that you take a taste and see what you think you could hide it in that your mother would drink.  Remember, it is impossible to overdose on Lactulose.  You can't give her too much, if that eases your mind.
 
You know your mom better than anyone. Try hiding her meds in applesauce or pudding. Sneak the lactulose into her tea or juice.  If you can get the Lactulose into her, make sure she's also getting fluids so that she doesn't get dehydrated.  Try to stay away from plain water, it's bad for fluid retention and sodium levels. Juices are good; Ensure is good.
 
No one can predict how long someone with liver disease will live. I can tell you that not managing her complications will speed up / increase the damage.  You have two choices: do whatever has to be done to improve her symptoms, or keep her comfortable and let her go.  I can't advise you which is right; there is no right or wrong.
 
God bless. Let me know if I can help.
DJ


DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/22/2005 12:13 AM (GMT -6)   

Lyd,

How are you and your mother doing today?

 


DJ


Lyd
New Member


Date Joined Jul 2005
Total Posts : 8
   Posted 7/22/2005 9:39 AM (GMT -6)   
Hello,
Well it is another hard day with my mom.  She is not doing so good.  She is asleep about 97% of the time.  I feel
that we are loosing her moment by moment.  It is so hard and I don't know how to handle this.  I am extremely exhausted.  I am trying to hold on and be strong but all I want is her pain to go away. 
Thanks for you concern and thoughts.
 
Lyd
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