Chirosis

Hello, MI1208 and welcome to the forum...though it's rather sad that you have to be here at all, much less on Christmas Day.

Kudos to you for caring for your father.  I know it is not an easy job.

What you have asked is what almost every new person who comes here asks.  Unfortunately, there are no definitive answers because each case is so individual.  It's the nature of the disease.  However, if you will look through some of the older posts, I think many of your questions will be answered and you will gain a lot of information.  Due to his age, I don't suppose your dad is a transplant candidate?

Just be there for him as much as possible and ask questions of the doctors.  Don't let them brush you off.

Hi, again, MI!  I know your dad appreciated your visit, as I have been in the hospital on Christmas and it's no fun!

I was diagnosed with hep C in '93.  I know that I contracted it in '68 or '69, when I was doing IV drugs.  I tried interferon when I was diagnosed...that was the only thing available at the time.  In fact, I tried 2 rounds of it.  Both times, my white count dipped so low that I was catching everything going around.  Also, I wasn't responding to it.  So I was taken off of treatment and never pursued it again.  Aside from extreme fatigue, which caused me to only be able to work P/T from '93 to 2005 (when I finally got approved for SSD), there weren't any symptoms.  I had blood work done every 6 mos. and an abdominal ultrasound once a year.  In 2005, it was noted on ultrasound that I had a large, cancerous liver mass--hepatocellular carcinoma.  Prior to this, I'd had bilateral hip replacements as the result of a condition called osteonecrosis, with a revision of the left hip replacement.  At the time I was diagnosed with liver cancer, I had already received disability based on the hep C and hip problems.  Shands didn't seem to think there was anything to be done for me, so I went to Mayo.  They saved my life, with treatment and surgery in which they took the entire right lobe of my liver.  I had a biopsy of the left lobe when they did surgery, and I do have cirrhosis.  I have been cancer free for 1 1/2 years now.  They keep a very close check on me.  I haven't wanted to try hep C treatment again, but may discuss it in March when I see my hepatologist.  I had to have another revision of my left hip just before the liver surgery.  Also had that hip surgery at Mayo.  After the lobectomy, I developed an incisional hernia.  Had that repaired, but 2 mos. later, it was back.  Had it repaired again and so far so good.  So that's me in a nutshell.  I still have a lot of fatigue from the hep C.  I will be 66 in March.

If you mean that the posts you've read don't state exactly what happens, it's because everyone is so different.  Mostly, we have caregivers here.  If you will read the Stages of Liver Disease thread and a couple of other informational threads compiled by Shelly, they may give you more of the info you are seeking.  I can tell you that it's a very frustrating disease and a real rollercoaster.

Thank you Connie for sharing your story, and for your support and prayers. I hope comfort for you.

Butterflythree, I appreciate your support and prayers, and I'm sorry to hear about your husband.

May God be with us all and give us comfort and strength.

MI1208

JoAnn, After my husbands TIPS procedure, I will be doing my best to update everyone on his progress. If anything comes from this terrible disease, maybe it is being able to help others with the experiences we have with it. I am so sorry that Jerry is having so much trouble with fluid. I do pray for you both everyday. Take care JoAnn. I'll be praying that Jerry gets to go home from the hospital soon and feels much better.

Hi again,
Just to let you all know.....my brother was told by a nurse that the reason why my Dad sleeps so much is because of the chirosis disease. She said that is the beauty of the disease, because as time goes on, he will sleep more and more and eventually slip into a coma like state. I guess beauty comes in all different faces. She seemed to think that if he does that, he will not feel the pain and will eventually slip away. He just spent a couple weeks in the hospital, due to high fever and extreme weakness. They said he had an infection somewhere. They tested and tested, but couldn't find any infection, so they suspected the fluid in his belly area was infected. He couldn't have the fluid removed due to low blood platlets, but once they platlets got high enough, they removed the fluid. The doctor said that it will probably need to be removed every 10 days or so. They did find infection in the fluid that they drained out. Now he is in a rehab center. It's a very nice rehab center, he was there back in August for about a month, so he feels more relaxed and comfy there. We are not sure if he will be coming home again or not, only God knows the answer to that. My Dad has basically given up the fight to live, he's just going through the motions day by day. We visit him everyday and that delights him.
I need to go for now...God Bless all of you!
Roxann

Roxann, thank you for updating us on your dad.  I could certainly sleep for 14 hours at a stretch if able to.  But I have animals to care for, chores to do, and life to live while I still can...so I force myself to get up.  My sleep is also interrupted a lot by foot cramps or my cats, or noise from other neighbors, so I never get a solid 8 hours or more.  I had this kind of fatigue and need for sleep before I developed cirrhosis...when I only had hep C.  It's for certain that it has gotten much worse, though, over the years.  I am so tired today, I can barely see straight.  I had to go out to the bank, drugstore, and grocery shopping; put all the groceries away, and help put back things that my cleaning gal had moved out of the way.  Hopefully, I can sleep tomorrow.

I know that some people do suffer terribly when in ESLD, but up until now I've never really had pain...just some twinges occasionally.  However, I am not considered end-stage right now as I am stable.  I do hope that when the time comes, I will just slip into a coma.

I wish my sister could even sleep, because it's obvious there is no hope of improvement and I feel like I am slipping myself watching her suffer. Also my 80 year old Mom is having a hard time seeing her suffer. I want her at peace and not suffering even though it breaks my heart.