Newly Diagnosed Cirrhosis...

Hi Martijean,
Welcome to the Hep forum, and I do hope you find some support as you move through your husband's liver disease journey. We are those with liver disease and those who love them.

It sounds like your hubby has alcoholic cirrhosis. Alcohol on his liver is like gas on a fire! Great news he has quit drinking . He needs DOCUMENTED sobriety so he can be eligible for the transplant list. He will need to attend AA and have a calendar signed at the end of each meeting in order to document. (Usually, 3 times per week). The transplant center may require counseling or sobriety classes of some sort, as well...but without 6 months DOCUMENTED sobriety, he will not be listed. And it starts the day of documentation...so let him know to find a meeting and go today! Many alcoholics think they can somehow avoid doing this and some die because they put this off.

Yes, MELD scores do move up and down for some, or stay stuck...which can be bad or good, depending on how sick one is. My husband, Themster, has end stage liver disease (ESLD) as well, and he had a TIPs (shunt in his liver). That was 18 months ago. He has remained "stable" with a MELD in the mid teens since the end of 2012. Transplants at the earliest are normally in the 22 MELD range. But in some centers, they do not transplant until late 30's, and someone pretty dire by then.

Even with MELD in mid teens, themister is sick, in bed about half of each day, has crushing fatigue, and battles hepatic encephalopathy (HE). His quality of life pretty much stinks. He has not been able to work since 2010...closed his company down right after that. You want to apply for SSDI if your husband is not yet on Social Security. Medicare does not kick in for 2 years, but you can find insurance, and will want to do that.

Fatigue is a constant with ESLD. There is a learning curve to this monster called cirrhosis, and I do hope we can help you move through your life as his caregiver more....gently. We have a Caregiver's Thread. Feel free to post there about anything.

Please ask questions. You are welcome here. In some past pages I have linked an itinerary of the testing process for my husbands transplant evaluation. It was 4 days at Mayo Clinic, AZ for him. Getting the right insurance product was one of my most difficult challenges. I will look back and put a link to that for you in a post. Dec 2nd is fine, especially since he has sobriety requirements to get "documented" before he can list. This will show the transplant committee his willingness and compliance to sobriety. He will need to be healthy enough to survive surgery, and sick enough to be at the top of the list.

Was he tested for Hep C? Can you tell us the meds he takes and doses? I am not certain, but it sounds like he probably has ascites and this is why the diuretics. You want to cut as much salt from his diet as possible. More later on that. Look at the Hepatitis Resource section in a sticky above and find links to the various issues he may be dealing with now and in the future. A lot of good folks here for you that understand alcoholic cirrhosis. Big Hugs

Thank you for your response! He was NOT diagnosed with Hepetitus (couldn't find a liver thread, this was the closest I could find)...Yes, he has ascites (4.2 Liters drained on Tuesday). I will relay the AA NOW to him. He has a Bible based addiction class that he is starting on Monday night. He is only 44, so not on SS, but has long term disability through work if the need arises. He has been exhausted for many months, and I'm sure is going to get worse. I am SO thankful to have found this group where I can get questions answered without all the medical Mumbo Jumbo...I'm at work right now, but will look at scrips and post when I get home this evening. (((HUGS))), themiz, thanks again.

Post Edited (Martijean1) : 9/27/2014 11:33:55 AM (GMT-6)

We don't have an appointment with a liver specialist until December 2nd, but have one with a GI on October 8th. Will the progression slow now that he's quit drinking? Knowing how quickly this has progressed in the past few months, that long of a wait is SCAREY!!!

The ONLY meds he was sent with are 2 diuretics (Furosemide 40 mgs in am and Spironolactone 100mgs am), Oxycodone for back pain (I REALLY disagree with this. Why give an alcoholic a narcotic???), and a 40mg Omeprazole.

He's SO lethargic lately. 9-10 hours of sleep, and ready for a nap after being awake for a few hours...-sigh-

Post Edited (Martijean1) : 9/27/2014 10:00:42 PM (GMT-6)

Martijean,

themiz has given you the $100 liver disease welcome...lots of good information! Information I wish none of us needed.

My situation is further down the line than you and themiz....my partner, Mike is post transplant now, but I can share a bit of the lead up to that point if it will help. He had hep C, alcoholic cirrhosis, and liver cancer....a bad combination..

He was getting more and more tired and ill in the fall of 2010.. I was frightened and begged him to stop drinking. It seemed as he felt worse, he increased his drinking ways.... He had been treated for the Hep C in 2003 and did not clear it, but decided to live out his days....he was just dying, he'd say, might as well die happy.

End Stage Liver Disease is NOT a happy decline.

He wound up in the hospital with sepsis, bacteria in the blood and acute kidney failure. We took him to a local hospital and they had us gather the family. But 5 days later they send him home, still alive, but very weak.

He had an appointment coming up...December...like you, at the liver center near us... at UMiami.

Meanwhile, he had another issue, his urologist wanted to do some prostate surgery but with his other problems (low platelets) wanted a second opinion from a hematologist about whether Mike should have that surgery.

The Hematologist had a FIT when she did his labs...started screaming at her staff....they jumped to! His MELD was 24, and they gave Mike 3 months max to live. She called Miami where she had done her residency and called in some favors and got him in during October....and good thing...he was on thin ice.

He was too sick to drink. He resisted the AA for a few more weeks til he began to realize that he wouldn't make it to Christmas the way he was going, committed to sobriety and joined AA.

At the TP center they went over the 6 month thing and said they would not start his evaluation until the 6 months. We were desperate....as he only had 3 months to live.. But they got him on all the standard meds...like your hubby....lasix and spirondalactone for water retention (Mike's was in legs and feet not belly), a beta blocker for portal hypertension, lactulose for hepatic encephalopathy. And with sobriety, his MELD went down to mid teens. Whew. Extra months on the statistical time table of his life.

We made a decision, however, next time he had an emergency....we would drive to the TP hospital ER instead of the one in our town. It was 125 miles away but if he wasn't bleeding or clearly having a cardiac episode, I was determined to be AT Miami.

And he WAS hospitalized....once a month during the 6 months waiting period. And a dear doctor there came to like us...liked that Mike had family support, that his family was getting educated, that he was committed to his sobriety, etc. And they started bit by bit to do is pre TP work up while he was in patient. He had the MRIs, the cardiac catherization, upper endoscopy, colonoscopy, etc etc. We did some as an out patient in between also...when he wasn't having more pancreatitis attacks or kidney failure. They kept him alive and we are eternally thankful.

He quit drinking in September 2010, started AA in November 2010, and was transplanted (at death's door) on May 1, 2011. Do the math, he barely made it. His MELD was high again....and they had found a tumor in his liver in February. GASP.

Though he got extra time by quitting drinking, lowering his MELD score, he was not well. We did the things themiz spoke of....wills, medical power of attorney, regular power of attorney, DNR directives, funeral plans...awful stuff. But who knew that he'd make it.

And so he had the surgery, it went pretty well, but he is, three and a half years later, still recovering. He is now almost 6 months virus free has he had a successful Hep C treatment.. Though he has been physically compromised, his mental health returned after TP. Thank goodness, as it was a rough ride.

I hope your hubby has a less difficult time, but many here, patients and caregivers share that problems can be rough.

One of our senior members has been alcohol free for years, had no Hep C, and has actually come off the TP waiting list...so there are great success stories..and some tragic ones.

We will walk this path with you....you are not alone.

Hugs,

Mama Lama

I would have never thought about the gun thing since I don't believe he has shown signs of HE yet. He has seemed a bit "off", but chalked that up to Oxycodone...I'll talk to him and his sister about it now, before he gets to that stage.

Mike did day #1 of AA today (signed/documented)!!! I am so proud of him!!!

Thank you all for sharing so much information and your lives with me.

Post Edited (Martijean1) : 9/27/2014 9:13:16 PM (GMT-6)

Are you sure he's taking 40 mg. of lorazepam? That's a huge dose. Along with oxy, I'm not surprised he sleeps a lot. He needs to cut his salt intake way down, as it will help with his excess fluid problems. Also, no red meat. That is difficult for the liver to process, compared with other proteins.

No problem.

Omeprazole will protect his stomach if he's taking meds.

Prothrombin Time or Pro Time or PT/INR

labtestsonline.org/understanding/analytes/pt/tab/test/

When themister is in the hospital for various break down's, we don't always see an INR on daily bloods...some days with, some without. On the Mayo labs, he has a Protime and an INR, which are not the same value. Did they tell you his MELD from that visit? Big Hugs

Also, what did he have done in the hospital, other than tap him? How do his platelets look, and also the ammonia? Big Hugs

martijean,
You have some medical reports and labs from two visits, it appears. Good! Well, he does have portal hypertension. Themister was given a beta blocker for that. Did they do an EGD? If you can let us know what has been done already, and other than cirrhosis, portal hypertension, a sludgy GB and ascites w/tap...what else do we know already? (His platelets are not bad. Themister's run in the 70's) Big Hugs

I see you did an edit to add some things from his bloods/labs...I replied before I caught that. Each item can be found in that sticky above. A lot of links to help you with those things. A lab tells you what is out of range, but not what an ALT is! Use the Hepatitis Resources sticky to find things like ALT/AST/ etc. He will be scheduled for routine labs. Right now, themister has labs every 3 months, and whenever he has an ER visit or the transplant center wants a look at them. Those with ALD often are asked to do random alcohol/drug testing, and if he is lucky enough to get accepted for a transplant, he will want to go in when they call.

We also put in some common scans, tests and links to online resources we like, to help you understand them in that resource sticky.

I would say you want to watch for trends with his labs. And scans, ultrasounds, etc. Each person is different on a given day. It does not give you much comfort or peace of mind right now. Mike requires more testing, longer sobriety, and a good liver doctor to dx everything going on, treat, medicate, and help him achieve the best quality of life possible.... for as long as possible. And hopefully, he will qualify for a transplant. It is difficult, martijean. Nothing easy about it. Big Hugs

Martijean1 you are indeed an angel. Looking for the cold hard facts, but I need to know that every once in a while (at least) there will be good days. Keep strong.