SOMEONE TO TALK TO ABOUT HEP C / CIRROHSIS

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cely
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Date Joined Aug 2008
Total Posts : 12
   Posted 8/12/2008 3:04 PM (GMT -7)   
hi everyone, Thank you for the info from all of you.  Ever since we both found out about his disease i have researched it, and nothing prepared me for what i personally have been going through. I even went back to school to become a medical assitant. I thought i could handle it but i have realized that i can not do it on my own. In the last 2 years he has been in and out of the hospital for blood transfusions. The last time was in October of last year and that was horrible i actually believed it was my fault that i was the one that was making him bleed. What happed was that he kept complaining about chest pain and sometimes going to his left arm (signs of a heart attack) so i decided to give him 81mg of aspirin, wow was i wrong in giving him that medicine. I even called his sister and told her that if he died it was my fault. I completely lost it I could not function at work and at home i spent all my time crying. No my husband does not realize how bad his health is affecting me i try not to bother him with my worries and problems.  His is taking medication but it hard trying to get him to take it. It's like making a little kid take the meds.As for his son that is living with us he is no help what so ever he sleep during the day, works at night and on the weekends go out with his friends, so no he does not help me at all. He kind of knows what is going on with his dad but i don't even know if he cares about it,why do i say this? because when my husband run out of money (he gets 20.00 a week) his son goes a buys him vodka. if i say anything to him he turns it around and tells his dad that i do not want him here and he know that i want him to be out on the street. No true is really is a good person, but i don't have the enery to argue with him after being at work and having to come home clean, and cook supper.
 
Cely-------------- mad ------------ confused
 

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 8/12/2008 4:31 PM (GMT -7)   

Cely, you should get the lazy son to pitch in and help you with dinner prep and cleaning!  Why should YOU have to do everything when he is available to help?!

You should not be so down on yourself.  I seriously doubt that 81 mg of aspirin caused your husband's bleed!  It is the correct thing to do when you think somebody is having a heart attack.  Did he have bleeding varices, or was he bleeding internally?  Also, is your husband on the transplant list or has he been evaluated?

I think liver disease is much harder on the caregivers and people close to the patient, than it is for the patient...simply because we (patients) usually don't really see how sick we are.  I know when I was fighting liver cancer and had had some treatments, I didn't feel well.  However, I was taking care of myself alone and dealing with it.  It was only when surgery removed the cancer and I started doing better, that I found out how others had seen me when I was at my worst.  I didn't know I looked THAT bad, but was told that I looked really bad, very ill when I was going through the worst of it.

I do hope you can speak to the son and let him know that he is helping to kill his dad by getting him booze!  Maybe that will make some impact.

We are here for you, Cely, so post whenever you need to vent, and also if things are going better.

Big hugs,

Connie


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 8/13/2008 5:56 AM (GMT -7)   
Cely

I can only ditto what Connie has already said to you. I agree after reading posts from the caregivers that watching the progression of this disease is much more difficult than going through it for the most part. We do know we feel bad. And for me knew I certainly didn't look the best I ever had however after I became somewhat more stable on my medication I heard from people how pasty colored I was and gaunt looking. Maybe your husband isn't realizing how bad things are because he isn't seeing it and it appears that his son isn't paying attention either, or maybe just doesn't want to know. I hope you find some way to deal with all the burdens that are upon you now. You deserve help.

Lucy

Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 8/16/2008 6:08 AM (GMT -7)   
Hi Cely, I agree with Connie. His son should be pitching in, and I can't believe he is actually giving his dad alcohol. Does he want his dad to die? I wouldn't blame you if you did want him out on the streets. I know that sounds harsh, but alcohol and this disease is a sore subject with me. Maybe he is in denial of how sick his dad is. I know that is how my husband's family was. I think they are just now realizing. My prayers will be with you.
Butterflythree
 
There is always hope!


rod
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/18/2008 2:42 AM (GMT -7)   
hello to everyone my dad has cirrihosis cos he drinks alachol he does not drink at home but we find bottles in the car or hidden in the garage he sometimes tell us that he can not stop he used to go to a meeting but it did not help him cos his social worker told us everything he told her and now he trust anyone and he refuse to get help he has low blood count and on wednesday the doctor told him to go to hospital and he refused he does not work for these last ten years and he is angry cos my mum is going to work a part time cos my brother age 15 lives with them and needs alot of money for school my dad is not folent he just say bad thinks to my mum i hope there was someone in malta where we live to help him cos i really hate to see him all tired everyday and if he has pain wont tell us cos he keeps everything to him self i am worried alot about him cos i live far and my mum needs to work she is scarde that something will happend to him when he is alone

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/18/2008 1:41 PM (GMT -7)   

Rod, I just read your post in another thread, basically saying the same things.  It would be better if you started a new thread introducing yourself.  Actually, this forum is for those who have been diagnosed with hepatitis or whose loved ones have been.  In your case, I would suggest that you have your mom contact Alcoholics Anonymous in their town and ask someone to make a 12-Step call (a home visit) to your dad.  There is no charge for this, and they know what to say so he won't be antagonized.  They may be able to get him into a detox facility or obtain other help for him.  Your mom and brother (and even you) could also find some help in dealing with your dad by attending Al-Anon meetings.

Connie


sweetie119
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/18/2008 5:42 PM (GMT -7)   
FRIGHTENED I AM WITH YOU...!! MY DAD HAS CIRROHIS
 
Hello everyone I am new to this site.. I have been looking all over the web to try and find a forum about cirrohsis of the liver. My dad was diagnoised with it last year. He didn't have many symptoms except weakness in his legs and tiredness. When he was a younger man he is (78 now..)he did drink somewhat. The Dr. told us his disease was a fatty problem he does not have hep..My dad will not admit that when he as younger he was a drinker. He has stopped drinking for probally 30 years now. My family, mom, sister, brother, etc. had no idea what we were all in for when this disease came upon us. I knew some because I use to be a nurses aide. The story goes on and on..The first thing that happened to my dad because of the cirrohsis was he woke up one morning with blood all over the bed, and had been sick allnight..he was in bad shape when the squad came. His B?P was very low, his oxygen too. He was on the floor and could not get up..I tried to help them get him on the cot but we could not lift him they had to call recruites and by that time dad was so pale and lethargic!! Ok, rushed him into hosp., trying to save his life, ended up with eight pts of blood, varices surgery, and it was a close one..He got better came home.
 
What we are dealing with now is that same I HAVE NO IDEA WHAT IS NEXT THING??? The water pills were dehydrating him and he had to go to hosp 3 times because of that, his feet and legs got so big one time they split open and drained out, then, you think he is doing pretty good but, he is always weak, but then some times he can still even drive his car..dang what the heck?? He was great and then comes a urinary tract infection, or kidney failure, he feels good and then is so weak he can't hardly make it to the bathroom even with his walker. The DR's dont say too much when you ask them stuff. I want to know how bad he is??? He has never gotten jaundice yet, his swelling is down, he has varices surgery three times and needs one more...then what?? My little mom is 82, but, very active, I worry about her worring about him...lol...she just doesn't realize that this is how it is going to be from now on...so so sad!!
 
The good news is that he lost weight and no more has to take a sugar pill or blood pressure pill and his stats are doing pretty good now. 
 
If my dad's liver is real bad bad should he be having other symptoms??? They never did a biopsy on  him either because of the bleeding...they did a cat scan and 100,000 other tests..I WOULD just like to know anything anyone can add for me to read, I dont care how bad of news it is, Please just tell it like it is...this is driving me nuts smhair
 
Thankx so much for taking the time to read my post...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/18/2008 6:44 PM (GMT -7)   

Sweetie119, welcome to the forum.  How did they diagnose your dad's cirrhosis if they didn't do a biopsy?  It does sound like he has a damaged liver, since he has had varices, etc.  A fatty liver is usually caused by alcohol abuse.  Has a transplant ever been mentioned?  Nobody can really tell you what to expect, but you might find that reading Stages of Liver Disease on this forum will help you understand.

Hugs,

Connie


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/18/2008 8:50 PM (GMT -7)   
Hello, Rod and Sweetie, Sorry you both have had to come here but you have found the right forum. There's a lot of very knowledgeable people here.

Read some of our older posts you can find answers to most of your questions.

Connie my husband's cirrohsis was diagnosed by the blood work and the physical exam. And the scans confirmed it. He never did have a biopsy. They would not do a biopsy because they said that he could bleed to death. They couldn't tell exactly how badly damaged it was but it gave them a pretty good indicator of the damage. I think why some doctors don't want to do the biopsy is that it is too risky in their opinion.
Hang in there Sweetie and Rod.
Thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


sweetie119
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/18/2008 9:21 PM (GMT -7)   
:-)  HANKX SO MUCH CONNIE!
 
I appreciate  your reply. about the biopsy, since we almost lost him to the varices problem I suppose they didnt need to do one. He had lots of tests for about 4 days in the hosp. before he was diagnoised with cirrohsis. He has also had to have fluid drained once from his belly too. I guess they didn't really need a biopsy, they did a couple of ultra sounds and also a ct scan of  his liver...I just wish we had some idea how far along he is in this disease. I suppose no on really knows..I am so happy to have found this forum it helps me help my family deal with this stuff...thanks...JOY

rod
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 8/19/2008 4:12 AM (GMT -7)   
hello everyone espacially sweetie basically we are in the same situation i think you read my post it is very hard to see your love onces to go through this time when i dad about 3 years ago vomit blood they could not do him the biopsy too they operate him immediately and then after a month they did him the biopsy last year when he went for a check up they found that he has swallon around his heart too cos i forgot to mention it and it is causing him short breath too he drinks and tell us he cannot stop he does not drink this much cos of his health but still he drinks we went to talk to alot of people so maybe they can keep him in hospital and then try to convince him to go to meetings again but know one help you cos they tell us he has to decide we even asked them to come at home and they refused basically we have to see him go throght and killing him self he is only 52 sweetie you are in my prayers

sweetie119
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/20/2008 8:26 PM (GMT -7)   
Rod that is awful..my dad is 78 and hasn't had a drink for 30 years and swears he didn't drink much...lol..yes he did me and my sister and mom know he did. For you to have to deal with you dad   being so sick and still drinking would be so hard!! I tell you my x boyfriend was a drinker since 16(48) NOW, and had a few health problems but, I gave it a chance cause he had stopped for about a year..then he started drinking again. I found out that he had been in probally every rehab center in Ohio and more!! I tried to deal with it and long story short I had to end the relationship. Last time he went to rehab he was there three months sober..got out, rented a nice apt..and bought a six pac!!! mad That was it! I loved him as much as you love your dad. I dont mean to sound pesimistic, at all. From what I have read about your dad hun, he has to do it himself!!! Alcholic's see booze as life and the first thing in life no matter what...I learned that early. You can only do so much , until it is driving you crazy to try and protect them from harming themselves. I am sorry to say that, they will do it no matter what if you are there with them or not...You are really in a pickle..u have a life too though. He chooses to do the drinking.
 
Like today my dad wan't feeling too good. He was weak and had to use a walker today. The dr. had him go get a blood test to ck for amonia levels...we will know tomorrow, it is amazing how many toxins are running though our bodies that the liver filters. When it isn't working it is pretty scary!!
 
I hope all of you can find some peace of mind with all these problems, and get a good nights sleep....THANKX
 
 
 
 
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/20/2008 9:03 PM (GMT -7)   

PinkGrandma, thanks for straightening me out on the cirrhosis diagnosis.  As you know, I had multiple CT scans, blood work, and MRIs, yet was never told I had cirrhosis until a biopsy was done of my left (remaining) lobe, at the time they removed the rt. one.  So I thought a biopsy was necessary. 

All I'm dealing with right now is a Tropical Storm named Fay.  We had about 6-7 straight hours of heavy rain today.  It has stopped, but predicted to resume about 8 AM tomorrow when Fay comes ashore.  Everything in this city has shut down for tomorrow, including bus service and all city services and offices.  I think they're overreacting, but better safe than sorry, I guess.

Hugs,

Connie


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/20/2008 9:26 PM (GMT -7)   
Hi Connie, Darn I have been in such a state today I forgot all about the storm. I sure hope that they are over reacting too. Keep us updated.

I agree that a biopsy is the best way to tell exactly how bad the liver is. But I think it all comes down to their clotting time as to whether they decide to do the biopsy or not. Not to mention it also takes away any chance of a lawsuit from a patient bleeding to death.

I found out yesterday that some low life went and destroyed the air-conditioner/heater unit on the house that I am buying. Cut out all the copper tubing. mad

But I found out tonight that the bank selling me the house is going to replace it and I also found out tonight that escrow could close as early as next week. yeah

Stay safe.......thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


sweetie119
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/21/2008 10:30 AM (GMT -7)   
Hi Pink Gradma..I hope whatever you are going through with your home it works out hun..
 
Oh my dads amonia level was high and he has to take som kind of liquid stuff...I am getting ready to look it up right now...any comments???

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/21/2008 9:58 PM (GMT -7)   
Hi Sweetie,
That liquid stuff is probably Latulose. It's some nasty stuff, but it definitely works to lower the ammonia levels.

How's your father tonight? If he's taken his lactulose as ordered he should be feeling a more clear headed by now.

Have a good night....thoughts and prayers......smurf
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


sweetie119
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/21/2008 10:08 PM (GMT -7)   
hi...he does not start on that lactose until tomorrow...but he hasn't been having much trouble with thinking yet..I am so glad!! I wonder if since this ammonia thing has happened does it mean he is getting worse?? Do you know Grandma, or anyone?  Thankx so much...JOYJOY blush

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/21/2008 10:16 PM (GMT -7)   
Joy, the high ammonia levels are just one of the issues that come up with liver disease. It does probably mean that his disease is progressing. He needs to follow all the doctors orders, take his meds regularly, eat healthy, no alcohol, exercise and proper rest.

Have you got a chance to read some of our older posts yet? I'll bump up some of the educational ones. Stick around a little while longer.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


sweetie119
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 9/17/2008 11:54 PM (GMT -7)   
  rolleyes Hello everyone and thankx Pinkgramma!! My dad's amonia level is down alot but, he is still drinking that lactose twice a day! Starting swelling again in feet and legs so, we are giving him extra water pills now. He is still eating and drinking good so this time maybe he wont get dehydrated like before. His belly sure is big now! He had gained about 40 lbs in five weeks, he had lost about 50 during the time he kept getting dehydrated! He was down to 210 now he is 250. My dad always weighed about 240 when he was healthy. He has dr. appt. tomorrow to see his liver dr. With all the wind damage here in Ohio there was no electric Monday so he could not go to dr. even the Hospital in Middletown was not taking new people emergency or not...anyway dad's dr. won't pull fluid off his tummie unless absolutly nessasary! He has only had to have it done once so far. With the way he looks now I hope in a way he does it. Dad is so tired of peeeing every five minutes...lol...so would I be...How is everyone else doing? turn

paix
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/26/2008 2:34 PM (GMT -7)   
I have a friend with cirrohsis but do not really know how the disease will progress and whether or not he is already a long way down the road and that death is really inevitable and likely to come in a relatively short space of time.  He takes tons of medication including spironolactone, alendronic acid, thiamine hydrochloride, vit b, ferrous sulphate, vit A and D etc.  He has been diagnosed with ascites and oesophageal varices and has also had anaemia.  He is 20 kg underweight, has yellow eyes, gets dizzy and nauseous.  He puts his head in the sand but I want to know what the future holds.  Help sad

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/26/2008 4:15 PM (GMT -7)   
Welcome to the forum Paix. I am sorry to hear that your friend has this disease. The progress of the disease is very different from one person to another. If you read some of the older posts you will find some very helpful information. You are a good friend to research the disease. Knowledge is always power. I will pray for both you and your friend.
Butterflythree
 
There is always hope!


paix
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/26/2008 4:32 PM (GMT -7)   
Thank you butterflythree.  It's just such unknown territory and the bugger's still drinking which is hard to watch.  His choice I guess.
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