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MI1208
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 12/25/2008 10:38 AM (GMT -7)   
Hi, I am new to this site. I found this site when I was seeking answers about my Dad's virul chirosis disease. He's had chirosis for about 15 years now, he was diagnosed in his 60's. He's had many symptoms along the way and has had many visits to the hospital and doctors offices. We were just told today that he probably has less than a year to live. He's in the hospital right now. I am hoping to get a realistic idea of what he may go through for the next few months, and what we can do to comfort him. I have been his general care giver for about 2 years and he's been doing very well for a over a month now, but all of a sudden he ran another fever and was extremely weak again, so he was taken to the hospital by ambulance(2nd time now). Doctors say the fluid that is accumulating is what caused his fever. He's extremely depressed and moody, he's cold most of the time, itches, has diareah a lot and is just plain uncomfortable. I need your candid feedback.
Thank you and Merry Christmas

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/25/2008 12:44 PM (GMT -7)   

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.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


MI1208
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 12/25/2008 8:00 PM (GMT -7)   
Hi Connie, thank you for your response to my message earlier today. Yes it's Christmas, but the important thing is that we know what Christmas is all about. When I visited my Dad in the hospital today, he seemed dim and distant, but was pleased that I came to visit.

I have read through many of the messages, but I don't find anyone being very candid, but I will keep reading as you suggested.

My Dad is 79, with other health issues, so he's not been a candidate for transplant. I'm not sure why he didn't try to do transplant when he was first diagnosed.

May I ask you what your situation is?

Thank you again for your feedback. :-)

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/25/2008 8:59 PM (GMT -7)   

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.



Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll

Post Edited (hep93) : 12/25/2008 9:03:24 PM (GMT-7)


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/26/2008 11:56 AM (GMT -7)   
Welcome to the forum MI1208. My husband suffers with cirrhosis and hep C. He was diagnosed about 2 1/2 years ago with cirrhosis and about 15 years ago with hep C. He had been doing fairly well, except for problems with encephalopathy and edema until last month when he suffered a massive bleed from varices in his stomach. He is now scheduled for the TIPS procedure on January 12 to relieve the pressure on the varices in his stomach. There is really no way of telling you what exactly will happen with your father. As Connie stated, cirrhosis effects each person differently. I'm sorry that your father is having to deal with it. If you have read some of the older posts, I'm sure you see that it can be a very ugly disease.

You and your father will be in my prayers.
Butterflythree
 
There is always hope!


MI1208
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 12/26/2008 2:50 PM (GMT -7)   
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

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/1/2009 9:07 PM (GMT -7)   
Butterfly
I'm anxious to hear how the tips goes for your husband.  Jerry's leggs are huge now.  His stomach is also.  They have tried to do a Para twice in the last month because the fluid is causing problems with his lungs.  Every time they drain they just get 1 to 2 liters.  They are saying the fluid is pooling in places that is hard to get to.  He's now 50 lbs heavier then he was Thanksgiving.  He really does look like a sumo wrestler.  I just curious to see how your husband does.  I hope it goes well and please stay in touch about his progress.
 
Thanks JoAnn

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/1/2009 11:47 PM (GMT -7)   
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.
Butterflythree
 
There is always hope!


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/2/2009 6:16 AM (GMT -7)   

Butterfly

Has your husband had a lot of problems with swelling??  Like his legs.  Jerry has done well for about 6 months but prior to that was horrible.  Now seems to be headed that way again but this time its his legs also.  They did a para but can't get much due to "pooling" what ever that is.  I'm thinking once we go home if we can't get it under control with meds they will do a tips.  He has lost 15 lbs from IV diuretics.  But still have a long way to go.  Thanks for keeping us informed.

JoAnn


MI1208
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 1/2/2009 10:30 AM (GMT -7)   
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

Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 1/2/2009 3:32 PM (GMT -7)   
Hi Roxann, my husband also has ESLD and is currently listed for transplant although his MELD score is really low right now so it looks like it will be awhile.  The one thing I am grateful for is that he is not in any pain, he sleeps quite a bit and I worry about him slipping into coma so I hope your dad's nurse is right about them just going to sleep as I would rather see him pass that way other than suffer. My prayers are with you,
 
 
Judith

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/2/2009 4:47 PM (GMT -7)   

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.


hep93
Forum moderator - Hepatitis


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/2/2009 7:01 PM (GMT -7)   
JoAnn, My husband has had problems with swelling in his legs. He has never had to have his stomach drained though. The TIPS procedure scares me, but the idea of him bleeding again scares me more. It is not the actual procedure that scares me, it is what may become of his mental state after the procedure. I am just praying that the lactulose controls the encephalopathy. I have read comments from people that have had the procedure and have done really well. I guess we'll see how it goes.

As always, you are in my thoughts and prayers.
Butterflythree
 
There is always hope!


autumnrain
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/11/2009 12:13 AM (GMT -7)   
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.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/11/2009 12:46 PM (GMT -7)   
Autumnrain, I'll reiterate what was suggested in your thread today--try to get Hospice involved in your sister's care.  They are experts at pain management and doctors defer to what they say is necessary.
hep93
Forum moderator - Hepatitis

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