cirrhosis,varicies, end stage liver disease

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missvicki
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/26/2009 9:53 PM (GMT -7)   
    Hi there.  I have been coming here for awhile and reading everyone's stories.  I just joined so I can also write in, hoping for some support.  My husband has cirrhosis and end stage liver disease due to alcoholism.  He quit drinking 2 years ago after he almost died from a ruptured varicies.  He had been hospitalized twice before that for internal bleeding, but it stopped.  The last time he was hospitalized for bleeding they did the TIPS procedure.  One week later while he was still in the hospital the varicies ruptured and he almost bled to death.  He was down to 4 units of blood!  The doctors told me to call the family and had a priest come.  That was the worst day in my life, having to call up my kids and tell them that their dad might not make it.  Well, miracles do happen.  He pulled through and is now on the liver transplant list.  He has been doing well and is also back to work.  I can't belive it, especially since they gave him from 2 weeks, to 2 months, and that was 2 YEARS ago!  He takes sporonolactone, furosemide, glyburide, and lactulose.  He hates taking the lactulose, but does.  He is tired all the time and gets an upset stomach from the lactulose.  Lately he has been telling me that he is tired of all this, and wants to quit everything.  I don't know what to do.  I don't want him to give up!  We have been through so much.  I feel like I'm dying inside, but act like everything's okay.  His meld score is 12, and he has type O blood.  Any suggestions would help.  Thank you so much.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/26/2009 10:09 PM (GMT -7)   

Hello, MissVicki and welcome to the forum!  I'm glad you decided to post.  I am so glad that your husband stopped drinking and is on the transplant list.  It is remarkable that he is working.  Liver disease makes one sooo fatigued.  So it could be that he is just sick and tired of being sick and tired.  I think that's understandable.  Is he taking any antidepressants?  That might be something that would help.  I hate to see him "give up" after having been through so much, and there is also the danger that he might drink again.  Is he doing anything to assure that he doesn't?  I'm sure his status on the list isn't very high with a MELD of only 12.  Is he getting counseling through the transplant center where he is listed?

I'm sure you will get a lot of support here, as well as information.  We do prefer that you post in black.

Thanks!



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


missvicki
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/27/2009 4:18 AM (GMT -7)   
Thank you hep93 for answering so quickly!  Yes, it is amazing that he is able to work.  I think that is adding to his fatigue a lot though.  He is just so worried about money and having insurance.  Especially the insurance, without that I don't what we would do.  The doctors did say that he could be on Social Security disability, but then what happens with insurance?   He isn't on any antidepressants, and the doctor says that his liver is barely functioning so I wonder if they would even give him anything.  As far as counciling goes, he had to go for it for 6 months before even being able to be on the transplant list, and then continued for another 6 months.  That really helped him, I could tell the difference.  He doesn't want to go anymore because he realized how much we ended up paying.  Money is very tight right now.  He does go to AA open talks with me now and then.  I too am a recovering alcoholic.  I quit drinking when all this started with him, so we are trying to recover from the awful disease of alcoholism together.  It's not easy but I am determined to do it!!  In July he will be sober for 2 years, and I'm not far behind him.  I know his meld score is low, and that having type O blood makes it even harder.  I read here that an A blood type liver goes to the person with type A blood that is highest on the list, and the same for type B.  But since type O blood is compatable with both blood types, he would have to really be high on the list before he would be able to get a transplant, is that correct?  My husband listed at Henry Ford Hospital in Detroit.  Thank you again. :-)

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/27/2009 6:13 AM (GMT -7)   

MissVicki, congratulations to both you and your husband on your sobriety. If you've read many of the posts on here, you probably know that I'm an alcoholic with nearly 23 years of sobriety, thanks to AA.  It is the best thing that both of you can be doing for yourselves.

As to the insurance, your husband should apply for SSI and SSD.  He could get Medicaid pretty quickly, based on income and assets.  Medicare (which he can get on SSD) is a 2-year wait from the time he applies.  He is actually hurting himself by working.  If he is approved for SSI/Medicaid, he could also qualify for food stamps and other services.  It is very, very difficult financially to go through the waiting after applying.  They took 2 yrs. to make a decision on my case.  Had it not been for help from my aunt during that time, I don't know what I would have done.  As long as your husband is working and making what they consider a living wage, he will not be eligible for disability.

Regarding the blood types and transplant, I will leave that to others more knowledgeable than I to answer.  Type O is known as the "universal donor," but there are other things involved in a match for transplant.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Exauhsted
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/27/2009 6:58 AM (GMT -7)   
cry  My husband has hepC and also end stage cirrhosis. He has had hepC for over twenty years, untreated.  He began treatment 7 weeks ago and has been a miserable mess ever since. To save his life he needs to continue with treatment but as you all must know, all he wants to do is give up.  He also has what is called cryoglobulimia which causes severe pain throughout his body, so he is on morphine and percocet. which he never takes as directed. He constantly is worried about not being able to provide. Felling as though he is less of a man because I try do do everything I possibly can to keep him comfortable and support him through this whole ordeal. I myself am a nurse, and I feel helpless!!! We have a very private family life, so not many people to talk with. His family is unsupportive, with their own isssues, so maybe there is someone out there that can relate a little bit
 
Thanks

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/27/2009 11:49 AM (GMT -7)   

Hi, Exauhsted, and welcome to the forum.  You have a screen name that is VERY similar to that of another member.  To prevent confusion, would you please reregister under a different screen name and then post your situation as a New Topic.  (Click on New Topic instead of Reply.)

Thanks!



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/27/2009 9:56 PM (GMT -7)   
Hello Miss Vicky and Exauhsted, I want to welcome you both to HealingWell.

Exauhsted , Connie is right ........your user name is so much like our other member that I thought it was her post until I read Connie's. I do understand why you picked though. It says it all.

Congrats.........Vicky on both or your sobrieties. I know it not easy trying to deal with your husband's illness on top of fighting your battle. check out our educational thread in the Hepatitis resource at the top of our forum. It has a lot of good information.

Welcome again to both of you........take care.......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.


missvicki
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/28/2009 10:05 AM (GMT -7)   
    Thank you Pink Grandma.  Sobriety is really quite wonderful, and doing this with my husband does make it so much easier.  The thing is, I love him with all my heart, but sometimes he makes me so mad that I could scream.  I mean he knew he had cirrhosis,  was hospitalized twice with bleeding varicies, but kept on drinking.  When he gets all angry about taking his different medications and especially the lactulose, there are times I want to say  "you did this to yourself!".  I know that is so mean, but sometimes that's how I feel.  nono    I truly believe that when the varicie finally ruptured and he almost bled to death, was in the hospital for 1 month, then in a nursing home for another month, was a wakeup call from God saying   "ENOUGH ALREADY!!".  I just thank God he was given another chance.      
    I did check out the educational threads, they are so helpful.  I even saved them under favorites in my computer.  I love coming here.  I don't feel so alone in our struggles.  
    Thanks so much to everyone!!     Please keep my husband in your prayers.            

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/29/2009 10:04 AM (GMT -7)   
Good morning Miss Vicky and Rick, Vicky I can relate to how you sometimes feel. Don't feel guilty about your feelings.........they are NORMAL for anyone dealing with their loved one with alcohol caused liver disease. I got so mad at my husband once that I told him if he wanted to kill him self it would be a lot less suffering for him....... if he used a gun. Talk about guilt. What I have learned over the last 2+ years since my husband died is that I had nothing to feel guilty about . I did my best to get him transplanted.......he waited too long to start taking control of his own health care. You can lead a horse to water but you can not force him to drink.........it's so true.

Rick, your prospective from a patient is priceless......what kind of projects and designing are you doing? My husband built me a stand for my washer and tried to put in a new steering columne in his truck. He got it in but........it didn't work so well. He finally had to send it into a shop to have it replaced.

Thoughts and prayers to both............
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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/29/2009 11:32 AM (GMT -7)   

Rick, you are a prize!  It really doesn't seem so long ago that you were feeling "helpless and hopeless!"  Now here you are, feeling much better and offering sage suggestions to others.  I'm so proud of you, my friend!  You are one of the lucky ones who heard the clarion call about alcohol and then got on board to get yourself healthier.  I consider us "the chosen ones."  Our Higher Power just has more for us to do here and is not yet ready for us to leave this earth.  Either that or we're just plain stubborn!  smilewinkgrin

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


missvicki
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/29/2009 9:52 PM (GMT -7)   
Hi Rick, I certainly agree with Connie, you are a prize!  Thank you for your suggestions.  My husband does try to keep himself busy when he isn't working, although just going to work everyday really wears him out.  I think he was just having a real bad day a couple days ago, and was feeling kind of depressed.  That happens now and then, I have those days too.
  This evening we went to my son's (26yrs old) softball game and my husband coaches the boys.  He really enjoys that because he used to coach for many years when my son was in school.  He also likes riding around on the lawnmower.  We have a very big yard so that takes awhile.  You also mentioned fishing, well tomorrow morning he is going perch fishing with his brother on Lake Erie!
   I am glad to hear that you are feelin better and keeping yourself busy with so many different projects.  You're a real fighter Rick!
   And thank you Pink Grandma for the words of encouragement, because I really am trying my best right now, sometimes I feel a bit discouraged.
   You folks truely make me feel so much better, thanks again!!!
  Vicki   :-)

JoanieLiver
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/12/2009 6:05 PM (GMT -7)   
Dear Miss Vicki: I am new to this forum also so I'm not yet sure how
all of this works. I just know that you must never give up. I had 2 liver
transplants in 2005. I have Hep c and the Hep C gave me cirrhosis.
I got Hep C from a blood tranfusion in the hospital . I was told that
the virus could lay dormant in your body for a lifetime. Well mine became
active about 10 years ago. In 2005 when I had my transplant ,as soon
as I rec the liver, it was rejected by my body.  They took that liver out of my body. I was without a liver for
20 hrs. This had never been tried before at my hospital. I got  another liver the
next day. Since your kidneys shut done without a liver I was on
diaylsis for three months. My kidneys are now working but not
perfectly. When they took my first transplanted liver out they left
me open so my body swelled and ripped my abdominal muscles.
I have had 10 incisional hernias since then. Without the  abdominal muscles there
was nothing to attach the mesh to that would repair my hernias so
this last surgery they attached the mesh to my ribs and that is working
so far. I tell  you this to let you know that there is always hope. I don't
know if you are a religious person or not but I know that all the
people praying for me saved my life. I know that what your going
through is extremely tough. I know your husband feels like he wants
to give up. Just let him know that if he wants to live and has the
courage to hang on something good will happen for him. I believe
this with all my heart.  I'm leaving proof. He has got to have the
will to leave and  the courage to follow through. I'm sorry I have
taken up so much time but please know things are not hopeless.
Praying for you and your husband. Diane

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/12/2009 7:07 PM (GMT -7)   

Joanie, it's good to have you here.  We have very few transplant recipients here.  In fact, most seem to be spouses/caregivers.  I also have hep C and cirrhosis and survived liver cancer 2 yrs. ago.  I really feel for you about the incisional hernias!  I had 2 of them following the rt. liver lobectomy for cancer and had a terrible time with a fluid pocket following the last one.  It has held up, though, for a little over a year.  It's in my midriff and I can feel the knots where the mesh was sewn in.  It's very firm in that spot, too.  I can't imagine having 10!! hernia repairs!

You picked up on an older post.  If you want to, you can start a new topic to introduce yourself.

Again, we're glad you're here.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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