End Stage Liver Disease

ILHS,

I can't believe what you are going through. Just too sad.

I think keeping him with you and making him comfortable will work for you. And Hospice will help.

I think each of us walks in the path we were meant to walk.

I had a long talk with Mike today about his having things he must be meant to do or see or help with...because he has bought some time to be on this earth with us. I hope he uses his gift wisely.

Hugs and prayers,

Carol

ILHS, this is where most of us communicate and give support. Have you checked out the Caregivers thread on this forum?

Hugs,
Connie

HealthyNow/Emma just started a new Caregivers thread and it is near the top of the hep page.

Hugs,
Connie

Evangelist, I'm very sorry about the death of your loved one. I can only imagine the pain you are in. I hope that Iluvhimso will be able to chat with you and help you through this painful time. You are also free to post on this forum, if you like.

Hugs,
Connie

Iluvhimsomuch

Hi I tried looking for you on facebook but I could not. Is everything ok?

Monica

Evangelist, I'm very sorry about the death of your Jeffrey. I can only imagine the pain you are in.

Prayers.

Emma

My heart goes out to all of the people suffering with End Stage Liver Disease. My husband of twenty years is in ICU as we speak. We had been in the hospital for three days due to confusion and the need of a paracentesis. We got home at 5:30pm he started having signs of being drunk or high which I knew wasn't possible so he laid down. about an hour later I went in and found him in responsive. He was lifeflighted to the hospital where he was first diagnosised with high ammonia level. So they started him on lactalose while he was in a medical induced comma. One day later a second ammonia test was done and showed to be perfectly normal. After a MRI was done we found out he has a good size spot on his brain where a blood vessel had ruptured. They put a tube in to relieve the pressure. Now we wait and pray. I have learned most everything I know about ESLD from the Internet. I'm still hoping and praying he pulls out of this and receives a transplant. God Bless y'all

I am on facebook if anyone would like to add me. I welcome the support, fellowship and friendship...

We all need to support and help one and other through this horrible disease and its duration.

Blessings,
Lisa

[email protected]

Hi, Mrs. Traywick. I also want to welcome you to the forum and ask that you start a new thread about your husband. Just click on New Topic instead of Reply. Prayers that he will pull through this current crisis.

Hugs,
Connie

I'm the guy with the cerebral hemorrhage. That happened 7 years ago. It put my already compromised liver into ESLD. That's when I got into the transplant program and received a new/used liver about 3 years ago. When I had my bleed, it was in a place they couldn't drain, so they gave me shots of vitamin K. I recovered quickly, was hospitalized a week, then a week of rehab and home. Five days later, I had a seizure, helicoptered back to Boston. My right arm was paralyzed and I couldn't speak. This time, I spent a month in the hospital and almost 6 weeks in rehab. I recovered over the next year or two. The only lasting damage is not remembering names, and I don't mean from being 62. It's a problem, minor though it may be. Also my speech is slightly off, but people rarely notice it. I guess what I'm trying to say is, don't give up hope for your husband. I almost died twice during that episode and recovered. What I noticed about many people with brain bleeds is that the ones that didn't throw in the towel, got better than those that gave up. The best advice I have ever had, came from a nurse. My first words, about 2 weeks into my second hospital stay were; I just want to get out of here. A nurse standing there, taking my blood pressure, replied; "You want to get out of here, work your ass off." I took her advice to heart. A couple of weeks later, I was in rehab and 3 weeks later began to move my arm. Within a week, I could lift my arm over my head and now it's as good as new. I'm back setting tile and stone for a living. Don't stop trying. Push your husband to get well. This will be the most frustrating thing you and he will have to deal with. Stay with it. Good luck.

I posted a new topic. Thank you for the thoughts and prayers.

Mrs Traywick

Hi Whitney, Welcome to the HW Hepatitis Forum.


We are a group of patients or loved ones of patients who are
affected by liver disease.<span style="mso-spacerun: yes;"> It is a good
forum, very supportive, with many active members who will join in to help you.


First of all, if you are good with your computers, it would
be best for you to start your own THREAD, Then copy and paste your original
post into that thread (touch pencil in upper right corner of post and it goes
to edit mode for the author..) then folks will see you are new and be more ready
to jump in.<span style="mso-spacerun: yes;"> You joined an old
conversation and some will skip over the old ones.


If you can't do that, pop a reply on this thread and I can
do it for you.


Give it a topic that describes you uniquely
year old with Auto Immune Hepatitis Desperate for Help.



That should out to bring out the members! It is a holiday weekend, and we are sometimes more quiet, but they'll be along.


That out of the way, welcome to the forum.<span style="mso-spacerun: yes;"> I'll repost my answer into your new thread when you get it out there.


I am so sorry to hear that someone so young is going through this, and facing transplant. They don’t call this “the gift of life” for no reason…donors save so many lives…God bless them, everyone!


My partner, Mike, 63, had a liver transplant about 18 months ago and it was no easy surgery. But he has been up and about since the second week and though his life is changed in many ways, he is doing well.<span style="mso-spacerun: yes;"> The new liver shows no scarring, but he has Hep C, so he needs to do a treatment again.


He is seen at UMiami/Jackson Transplant Center. They have Tuesday and Thursday morning clinic
hours for adults, but afternoon is for kids and we are shocked to see how many
children and young adults they see in that clinic...it seems like hundreds
flowing in and out of the doors. Who could believe there are so many…


Before we got into this liver disease mess, we didn't know a
soul who had ever been down this path and now we know that transplants are
going on all the time at the major centers and many many people gain a new life
with transplant.<span style="mso-spacerun: yes;"> I hope that is the same
thing with you.

Where are you being treated?


I can hear in your post that you are suffering with both the
physical and mental/emotional side effects of liver disease, It might be good for you to print and share
some of the posts on here to show your hubby that you are not alone in your feelings
of being confused and ill and SO VERY TIRED. Those symptoms are pretty much the
normal state of things with advanced liver disease.


The hepatic encephalopathy that accompanies failing livers
can be worse than any of the other more obvious symptoms. It is caused by ammonia in the blood not being filtered by the liver and kidneys...so it sticks around and causes mental changes.
My wonderful Mike got
worse and worse.<span style="mso-spacerun: yes;"> Now, after transplant,
he is still learning bits and pieces about how he was the year before
transplant, as he has amnesia for that whole year. He had totally forgotten
that his AA sponsor came to the house to visit when he got really bad, for example, and after
to see how he was doing. He called me every day at the hospital so he could "report to the members how is was doing." Mike totally forgot
something as caring as that!


He was hospitalized a week, a month, then 8 months before
transplant. They would get his sodium and potassium and kidneys and pancreas
all fixed up and he'd come home feeling better and go slowly downhill again. Finally he got the call and he has been up and down a bit, but really good at the moment. Whew.


I am not sure about the autoimmune specifics on meds, etc.
and will send an e-mail to our AIH Co Moderator Dany as soon as I post this so
she can add her two cents.

My question is whether the advanced AIHers take the same
meds for confusion as the Hep C and Alcoholic Hep folks…the lactulose and
xifaxan???<span style="mso-spacerun: yes;"> That did a world of good for
Mike’s mental state.

Mike was often aggressive and negative and argumentative. He was not able to hear
his loved ones remind him to be nice, to say things nicely. He just would argue You say that your hubby is frustrated. Do you think you are a bit negative also, and don’t know it?
Let us know how you are doing.

I pray that you will get your transplant soon and that you
will start moving uphill again!

Best to you and your young family,


Mama Lama

Post Edited By Moderator (hep93) : 12/29/2012 12:19:50 PM (GMT-7)