My brother has decompensated cirrhosis

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Lil Sis in SC
New Member


Date Joined Nov 2016
Total Posts : 6
   Posted 11/7/2016 5:21 PM (GMT -6)   
Hi All,
I been lurking on this site for a while to get info. My brother, Chris, is 45, and was diagnosed with de compensated cirrhosis due to alcoholism about 3 weeks ago. I live in SC and he lives in FL. The doctors at the hospital told me if he continued drinking, his lifespan would be less than 6 months. If he quit, his lifespan would be about 2/2.5 years.

He has lived alone, divorced, for the last 7 years, and has drank heavily (1.75 liters of vodka per day) during those years. He did go through a 45 day rehab, but it didn't stick. He has been detoxed probably 10 times in the past 2 years. He has also been hospitalized 6 times in the past 6 months due to alcoholism. I am moving him up with me because he can no longer live alone.

Right now, he is very frail and dealing with chronic ascites buildup. He doesn't have HE or itching. He is pretty jaundiced. His MELD was at 24 according to his last hospital visit. He now wants to quit drinking and has been sober since his last hospital release. He's on 2 diuretics, a beta blocker, naltrexone, and lactulose. It gets very scary and complicated because he currently has no form of insurance whatsoever. The hospital helped him apply for SSI/ disability because he is completely broke. It was denied because they say he has more than 2k in resources, which I know for a fact is false.

His friends are chipping in to pay for out of pocket medical costs until SSI can be sorted out. I'm going to help him as much as I can. My one question is, do MELD scores go down significantly after stopping drinking? Chris is scared of transplant but it may be the only option. And it's a hard road because he has to prove sobriety. He does have the luck of an AB blood type, which is universal recipient.

I'm new to this and am looking for info. And advice would greatly be appreciated!
Thanks

Post Edited By Moderator (MamaLama) : 11/7/2016 10:19:41 PM (GMT-7)


Lil Sis in SC
New Member


Date Joined Nov 2016
Total Posts : 6
   Posted 11/7/2016 5:24 PM (GMT -6)   
Ugh title should say de compensated! Autocorrect..

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1082
   Posted 11/8/2016 12:43 PM (GMT -6)   
hi lil sis,
welcome to our forum. we are patients of liver disease and caretakers of patients.

WOW!!! so sorry about your brother. I am going thru the exact same issues as you. My twin brother has decompensated cirrhosis, and liver cancer. He and I, got hep c as teenagers, and drank throughout are adult lives. I quit drinking a while ago, and cured my hep c in 2012. im recovering nicely. My twin couldn't stop drinking, until he was diagnosed with cancer. He has stopped for about 4 months now.Hes trying to get thru 6 months of documented sobriety. I understand the emotional roller coaster, waiting for your loved ones to respond..

getting his SSI, and healthcare, likely Medicaid, will help getting resources and meds approved. My brother got a drug called XIFAXAN, approved by Medicaid. it works with his lactulose, to help rid the body of ammonia and other toxins in the intestines. it really helps him with HE(hepatic encephalopathy).

You have to drink water with diuretics, to protect your kidneys. please ask your dr what the appropriate amount would be.

Are you getting documented rehab,AA,or other approved documentation of sobriety? this is really big.. He needs to show drs that he will take care of a donated liver. you have been lurking, so you know that drs consider donated livers THEIR LIVERS. Your involvement, and moving him in with you is also very big. not only can you keep an eye on him, he will need a solid support team post transplant.

talk with your drs about where to list him, if he qualifies. florida transplants at lower melds, than other big cities. do you live in south Carolina?

hopefully some of our other members will chime in for advice and support. let me know how things are moving along, or just to ask questions, or vent. best to you and your brother.
much respect to you.

Lil Sis in SC
New Member


Date Joined Nov 2016
Total Posts : 6
   Posted 11/8/2016 7:37 PM (GMT -6)   
Thanks PPM!
I am moving him to SC in 2 days. My family doctor will see him ASAP to check him and recommend a hepatologist. I did contact the social worker for the transplant center at MUSC, and she said he may not be eligible for Medicaid because they look at past earnings, and he made a lot as a civil engineer?! So he needs to get on SSI/disability and then pay for Obamacare:(. And we should get a lawyer to push the SSI :( :(.

He is doing much better having support. He says the Naltrexone really curbs the drinking urge. He takes his meds and is eating a lot better. He feels pretty ashamed that he is in this state due to drinking. I found an addiction counselor at home to help him with the multiple worries addicts have. He will start AA as soon as we get to SC. Is there a specific form he needs to get signed? To prove sobriety?

I just hope his health stays stable or gets better. He has two daughters under 18. They are really scared.
Thanks for the info!

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1082
   Posted 11/9/2016 11:53 AM (GMT -6)   
hi lil sis,
glad to hear he is feeling better. he is very lucky to have you by his side.

AA does documentation for court ordered rehab. So im sure they can help you with that. To be sure I would ask the social worker at the transplant center. they can make sure your getting what they require..

Whether his meld goes down from sobriety, I cant say for sure. But his symptoms will improve, and gives himt the best chance for a successful outcome.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 11/11/2016 8:52 AM (GMT -6)   
my partners meld went from 26 to mid teens with sobriety.

he felt a bit better, but during his 6 months aa wait, it crept back up to low 20s. his cancer markers started uphill andvtge found a small tumor in the liver. that gave him tumor points whuch pushed him over the threshold for tp.


he was transplanted on the 1st day of the 7th month of his aa membership. they had him have a calendar signed atveach aa meeting at the end of each one AND he went weekly fir an ethanol blood test...to prove his ongoing sobriety. he was so ill we did not think he would make it.

mike is sober since fall 2010...and had his tp may 1, 2011 and is doing pretty well although he has other challenges.

it is good you will be near a major med center.

sorry for bad typing. i am in cast on dominant hand and typing with one finger.

hugs
mamalama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Lil Sis in SC
New Member


Date Joined Nov 2016
Total Posts : 6
   Posted 11/13/2016 4:05 PM (GMT -6)   
Thank you all for the input. Chris is eating much more, and the jaundice is so much better. The ongoing issue is ascites. It's not getting worse, but it's there. He sees my family physician on Tuesday. My doc will recommend a GI doc in our area. Sadly, I don't believe there is a liver only specialist here.
I will post more after the doctor visit. Thanks for the support. It's been surreal.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 11/13/2016 4:29 PM (GMT -6)   
Hepatologists are in major medical centers.

When we lived in CT, we had to drive to New York City to Mt Sinai.

When we moved to FL, we drove over 100 miles to U Miami for special care.

He really needs a hep doc at a major med center to look after his needs.

Our local guy said he would refer Mike to a TP center when the time was right. Then we had a routine visit with a hematologist because he platelets were tanking and he needed a transfusion. That doc had a fit, called Miami, contacted a friend in the liver transplant area and boom, Mike was in. It was a real pain to drive him there, but it saved him. They guy here in town treated him like he deserved to die because of having Hep C from teen age drug use, and because he was a drinking man. Mike is a good man, who made some bad choices, and he has deserved every day of his re-newed life.

Hugs,
Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Lil Sis in SC
New Member


Date Joined Nov 2016
Total Posts : 6
   Posted 11/13/2016 5:05 PM (GMT -6)   
Mama Lama,
I looked on the Internet and see that there is an office that specializes in "gallbladder, pancreatic, and liver disease". They have a board certified hepatologist. Is this good enough? MUSC is the liver transplant center in SC, and is 1.5 hours away. If he needs to go there, I will drive him. I figure my family doc (who I trust and have gone to for 12 years) could tell me.

The social worker at the MUSC transplant center said he needs the 6 months sobriety first before he can be evaluated. So I was planning on local care here until he reaches that mark.
But, this is my first rodeo, so not sure if I know what I'm doing!😳

Lil Sis in SC
New Member


Date Joined Nov 2016
Total Posts : 6
   Posted 11/13/2016 5:09 PM (GMT -6)   
And to add ML, I get the whole "well they made their bed so know they have to lie in it" line. I've heard it a lot. But I love my brother, who has not harmed anyone but himself, and I will never give up on him. I'm sure you've BTDT!

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 11/26/2016 3:37 PM (GMT -6)   
Sis, I think the tiered care you have planned sounds good. Local care during the 6 months. Make sure he goes to meetings or to his counseling sessions. Talk to the social worker at the TP center to be certain you are getting whatever documentation they want to see about the sobriety. they liked Mike's big calendar he got at Staples and had the AA group leader sign after each meeting. One fellow here missed one counseling session because he was at the ER and they made him start the 6 months over again.

There are meds that help the pre TP patient that your local Hep certified doc should know about. And they should do his bloods often. Mike wound up in the hospital a week a month during that month wait. He would get a load of stuff in hospital...electrolytes rebalanced, some albumin, and re-evaluation of his hepatic hypertension...it is different than regular hypertension and can cause veins in the esophagus to rupture and bleed (this is a 911 emergency...you'll know if it happens). There are meds for hepatic encephalopathy. This is when the liver can't clear wastes from the blood and that gunk gets in the brain and makes the patient a bit on the crazy side. There is lactulose which is inexpensive and Xifaxan which is very expensive. Both help a lot to keep the stool soft and flowing out of him. The Xifaxan is an antibiotic that helps clear out the toxins somehow. Mike was cranky, disorganized, forgetful, rageful, etc. The morning after his TP he was back to normal. turn

We had a problem with the local hospital. They didn't seem to know what to do. So I started taking him when he was bad to the ER at the TP center. The docs got to know him and our family and guess what...they started is TP evaluation BEFORE the 6 months and he got his new liver 6 months and 1 day after that clock started to tick. It was a close race...he almost did not make it, but UNOS has rules. 6 months!!!

Wishing your family the best.

Hugs,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.
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