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Posted 2/23/2007 10:01 PM (GMT 0)
eyes  

Hi Everyone I am a new member looking for information on ESLD. My husband

was diagnosed with it in 2002 and since then he has been in an hepatic encephalopathy episode and hospitalized a bunch of times prior to Tips  which resulted in the TIPS being put in he has since then has had it unblocked several times. The last unblock and additional ones put in resulted in a blood infection after the procedure. He is now on a less strong antibiotic through a pic line - which he will have to be on forever according to the infectious disease doctor. He is not able to be on the transplant list due to alcohol intake which finally ended this last go around just several weeks ago.  He developed an infection and discitis. He is in a lot of pain and is trying to not take pain pills. He also has had plural effusion in his left lung which just was (fluid removed) at the end of 2006, and yes he still smokes. He has trouble sleeping and loss of desire to eat –  Mood swings are great,  I am trying to find out what is coming. Everything I research gives the symptoms which he has all but nothing else about stage 3 or so.  It has been a rough battle for me and  I would like to prepare myself for what is next as far as next stage  – I know the end is coming I just want to have a idea as to what that will be as far as body function etc.

 

Thanks anyone for your help!!     

Posted 2/23/2007 10:20 PM (GMT 0)
Hi my name is autumn im 22 years old. I've know for 12 years that my mom has hep c and hep b but b is dorment. she  got it from a blood transfusion when she was 19. well about 4 years ago she got diagnosed with end stages of liver failure.which is the final stage of of hepc/cirrosis.well up until a week ago she was taking her normal amount of lactolose. its has stopped working her ammonia level is 147 which is extremley high. her confusion hasnt hit her yet. dr. said it will soon. and when it does she has a 95% chance of going into a coma shortley after the confusion hits. her red cell blood count has been depleading for about 6 months now she takes iron 3 times a day. her meds have stpped working for her staph infection that she has.  You know, The best advice i can give you and this coming from somebody who has had to deal with her mom dieing since i was 9. she has had all my life. enjoy time while you can with the one you love. Because every hep c patient goes differently. theres really know way to tell untill it is really staring you right in the i. you will just know. MY mom is a very special women because she has survived with this disease for over 30 years. tha average doesnt make it to 30 years. My mom doesnt have months left unfornatly she has weeks is what the doctor is saying. so you never reaally know even though the doctor gives you a time limit he is still unsure its really hard to death with hep c but wtach out for certain signs and symptoms. :-)   my prayers are with you and your family.
Posted 2/24/2007 2:47 AM (GMT 0)
Well come to HealingWell Angel2 and Mommyangel,
First of all I want you to know that neither one you are alone. My husband too has ESLD and we have another young lady who took care of her dad. I know exactly what you are going through as does alot of others on this forum. This disease is very hidious for the patient and very stressful for the caregiver. Every patient's symptons are slightly different from others. My husband too has had many encephalopathy epizodes. He's been free from them since last December once they put him on Xifaxan. They even cut his lactalose down and he is still doing good with that. He is however been very tired and his last blood work showed that his white blood cells are extremely low. His nurse cordinator just called today and he has to do more testing and possibly have another blood transfusion. He's had quite a few of them also. I understand that the nearer it gets to the end that the chances of him having a bleed out increases. And also a coma from the encephalopathy. I just take it day by day and do the best that I can.
On this forum everyone is so helpful and kind. I don't know what I would have done without being able to talk with others who know exactly how I am feeling and understand this terrible disease. My thoughts and prayers will be with both ofyou.........Take care of yourselves too, as much as you can. :-) Pink Grandma
Posted 2/24/2007 5:42 PM (GMT 0)

hi everyone, this is my fatherschild i havent posted for a while because i just couldnt, dealing with my father being so sick for so long and not being used to it, but i have been watching and reading everyday on this forum. great place to go and great people!! yeah i had to responed to this, it has hit home. mommyangel you are a very brave little girl. i m twice your age at least. i lost my father in december with cirrohsis but we didnt know he even had it untill july of 2006. towards the end the lactolose doesnt even work the amonia levels just stay high, like your dr said they go into a coma. and yes pinkgrandma they sometimes do have bleed outs that what my father did after that its just a matter of time the best thing you can do is just make them as comfortable as you can, you cant give them lactolose after that it irritates  the GI Tract and makes it wrose. i have taken this very much to my heart so i read everything i can about cirrohsis. my thoughts and prayers are with everybody on this forum. the pain has end for my father and he is in a better place with my mother, but i still have a hard time with this horrible horrible disease!!! i dont think i have seen anything like it. i just cant imagine being such a young age and having to go threw this, life gives us tough choices yeah and sometimes they arent fair, but we have to deal with it we have no choice in it. mommyangel my prayers are with you and angel2 and pinkgrandma hopefully they wont take your husband off the transplant list i pray!! i guess now that both parents are gone im feeling a little sorry for myself, and its time to stop, because life will go on.  everybody please keep in touch.

love hope and prayers

annette

myfathers child

 p. s excuse my spelling its not the best i do.

Posted 2/25/2007 3:08 AM (GMT 0)
hello Annette,glad to see you posting...I know how hard this is on you, having lost my own dad just 4 yrs ago,,but there are days it seems like the pain is still as raw as the day he died. It is strange though,,I had an appointment the day he died to try to get on anti Ds or nerve pills,because watching him die was horrible,,,,,the final straw was lifting him out of his bed like a baby,and holding him as my stepmom changed his bed....once he was gone,though it was like having the foundation taken out from under me,,,,I felt at peace for him,,,,,the watching was the hardest part. I will keep you in my prayers ,that you begin to heal from this.
I want welcome the new members ,,I am glad you have found a place to go for support,,,,,I know how much it has meant to me. My husband has chronic active hep b w/cirrhosis...also many other health issues including heart and back problems. Being a caregiver is harder then anything I have experienced,including raising my children. It is hard to "take care" of an adult who wants to feel independent,yet is not....I feel your pain in dealing with this,,,,,,know that your NOT alone. I am not sure anyone can tell you how the end will come,as it seems everyone has different experiences......enjoy each day and live like there is no tomorrow( i know thats cliche but true),,,,,good luck in dealing with this and take care of yourself,make sure to have alone time and enjoy YOUR life too.....
Posted 2/27/2007 5:25 AM (GMT 0)
Annette,
I am so glad to see that you are posting again. And yes it was you that I was referring to "another young lady taking care of her father". It's okay to feel sorry for yourself sometimes. Especially after what you just went through. But your right life does go on. Just take it one step at a time and before you realise it you will be running through life again. Death of a loved one has a way of stopping most people in their tracks. It really hits me hard even when I am not close to the person or don't even know them. So when a loved one dies in my family I am like in a daze just going through the motions. And since in my family I am looked to as a strong person I can not let them see me cry. Some of my family think that I am cold blooded and don't care..............but if they only knew. Let me stop rambling on. Hope you doing okay, and please keep posting. :-) Pink Grandma
Posted 3/24/2007 2:37 PM (GMT 0)
Sounds like he is in Stage 4, not Stage 3. How much is he drinking? It's such a shame to qualify for a transplant & yet still refuse to quit drinking.

I am in Stage 4 due to chronic HCV & I am on the transplant list. I have not had a drink in about 5 years now. I never drank every day, but I could be quite a binger on the weekends. Drinking with HCV is worse than just drinking. I didn't know I had HCV until 5 years ago, & that's when I quit drinking. I did it for my wife as much as for myself.

I hope you are still posting, or at least visiting this site to check on replies to your posts.

Doug
Posted 3/24/2007 11:21 PM (GMT 0)

Welcome to our new members!

Annette, it is good to see you posting again.  I have thought of you often and wondered what happened with your dad.  I know the pain of your loss, but you certainly did all you could for him.  Please post when you feel your knowledge can help another--or just to say "hi."

Hugs,

Connie

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