dx-cirrhosis: scared and reeling

In my case, the cirrhosis is due to chronic active hep C.  As long as I have the disease, the cirrhosis can progress.

What was your husband's reaction to the news?  Don't forget to post in Caregiver's thread, too.

Hugs,

Connie

he kept drinking...

he took the inteferon/ribavarin treatement in 2003 and quit drinking for a year.  the treatment failed. he stayed off the sauce for a year then gradually allowed himself a glass of wine...and it started.

he has had good and bad times since.  they started calling it cirrhosis about then also.

they test him all the time...blood, endoscopy, colonoscopy, abdominal ultrasound, ct scans, mri's.  he had 2 pill endoscopies after some bleeding last year. turns out he gets these bleeding episodes in his small bowel and they can fix those AVM's via enteroscopy. I think this is maybe not a liver thing, just something he has.  They explained that a veinus malformation is a cluster of tiny capillaries that have likely been there forever start to seep.  He gets really anemic and they fix him up.

he has stage 2+ varicies in esophagus and anus, so he takes meds for hepatic hypertension.

hepatic ecepalopathy from the high ammonia build up and takes the lactulose.

ascites and edema so he takes 3 diuretics

he is very jaundiced now with the high bilirubin...his urine was dark rust colored in hospital but that is somewhat resolved.

he had a rectal bleeding episode in early September and he tumbled downhill quickly.

he is short of breath and has NO energy. he goes from couch to recliner to bed.  Though once a day he wants to "go somewhere" and we take him for a ride.  NO DRIVING.

the doc at U Miami says that he won't last til Christmas with his decompensated liver if he drinks again.  period end.

i'm not so sure that it is going to make any difference in the outcome at this point. my bones are not optimistic today.

he has been alcohol free like emma's hubby for a month.  and to tell the truth, he is not feeling better better, but he is better than he has been since the bleeding.

the sad part is he is 60. 

the good part is that he is not in pain of any kind.

that's it for me today, off to bed.

ml

i have cut a zillion deals with him, talked, threatened, begged over the years

and in the end it is only the alcoholics decision whether to drink or not

the magic words were delivered by the hepatologist last Monday:  "if you drink, you will die before christmas!"

some magic!

he doesn't think it willl make any difference, that he will die anyway long before he is 6 months sober and a liver became availble.

i hope this isn't the preparation for him to go out in a blaze of...

that is my new worry, that he'll say the heck with it........and start up again.

maybe he's too ill...

ML, I pray that he doesn't give up.  In AA there is a saying, "Don't give up before the miracle happens," meaning the miracle of sobriety and all that it brings.  I do have a strong feeling that IF he stays sober he will get a transplant.  In any event, abstinence will halt the progression of the disease.  When will he start AA meetings or alcohol counseling?

Hugs,

Connie

It's "before."  The idea being that the first 6 months are very hard and many people just don't hang in there.  Six months was the turning point for me, in that I really started thinking I could stay sober at that point.  I began to laugh, something I hadn't done in a long time, and became more optimistic.

The doctor said "every day" because a person should devote as much time to staying sober as they did drinking.  For the first 6 yrs., I went to meetings 5-6 x a week.  I went straight from work to a 5:30 meeting and on Sat. went to an 8 PM meeting.  I understand that hubby may be too ill to do that right now and counseling will probably not require more than once a week--maybe twice.  Whatever helps.  There is no "right" way to stay sober, but AA has the longest and best track record.

Hugs,

Connie

Emma, he did it when he was ready to.  That's the bottom line.  Don't be angry at yourself for not trying harder to get him to stop.  Chances are, it would've been wasted energy.  We have so many slogans in AA:  "It takes what it takes" is one of them.  Everyone has a different bottom and each person must hit his own particular bottom before being ready to even consider that there might be a problem.  Some alcoholics never stop drinking.  Others are sober for 10, 20 years or more and then relapse.  That one was a real shock to me when I first went to AA.  And most people take more than one try to stop for good.  I was in and out for 9 mos. before I finally stopped for good.  "One day at a time" is also an AA slogan and one of the best.  "Let go and let God" is another.

Hugs,

Connie

You need a Medical Proxy at the least so you can participate in all aspects of his care, talk about his wishes make sure everything is clear and doccumented. Start your binder with all the info ie; labs dx prescriptions imsurance you never know when another Dr may get involved and there will be no confusion. Things change so much that the binder will become your best friend when questions are thrown at you.

You cannot control the roller coaster but somethings can make it easier for you.

Sue

My Dave has been drinking alcohol since he was a teenager. He is now 45 and already has ESLD and Cirrhosis. He and I and the rest of our world know that there is nobody to blame but himself. 

But - Blame and guilt helps nothing and/or nobody !!

I do not blame him for continuing to drink after bringing him to the ER over a year ago because he was sick. The Dr. told him then that he needed to stop drinking - that that was the cause of him not feeling well. He did not want to hear or acknowledge what the Dr. told him then but he did "slow down" and got a little better.

Eventually though he got back into his old habits - some days were even worse and he drank more than the norm. He would feel bad and I would tell him it was from the drinking and he would try to blame it on something else. I guess overall - even though we both knew the drinking was causing him to feel ill - honestly neither one of us thought at 45 years old it would/could cause this.

Anyway - now we are where we are and are just trying to cope and deal with all of this. No need for guilt or blame. Too much wasted time and energy !

We are just taking one day at a time. Please just try to do the same. Take it day by day and try to enjoy each one and each other!

Guilt and Blame are so much easier to focus on, but good, bad or otherwise -everyday is a gift!

Thoughts & Prayers to you both !

Diane & Dave

Way to go MamaLama!  One day at a time. 

DO take care of YOU.  I would get so wrapped up in Harvey’s condition that I would forget about me.  I was quick to respond if someone asked how he was doing.  Occasionally, someone would say, “How are YOU doing?”  I would break down in tears.

We’re all human and can take only so much.  We must step away and recharge our batteries from time to time, even if it’s only to take a walk around the block.

I hope today is indeed a good day for you.  Enjoy it.

Penny