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........
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
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
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
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
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.
mela
i see your post that you have crohns do you have hep c also?
i see your post that you have crohns do you have hep c also?
sher,
will be praying for your brother and family too and will put my prayer warriors on it too
will be praying for your brother and family too and will put my prayer warriors on it too
Any info re experience with family member(s) who have end stage liver disease and will not have liver transplant
Any info re experience with family member(s) who have end stage liver disease and will not have liver transplant
SherLB97@aol.com said...
(he still builds up proteins causing his amonnia to rise".....he is in the end stages of liver disease")
(he still builds up proteins causing his amonnia to rise".....he is in the end stages of liver disease")
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 
Has your brother considered a liver transplant? My brother in law just had one he is doing great.
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
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
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
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
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
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
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
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.
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.
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)
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???