new to this and Frustrated

Hi,I am pretty new to all of this and so very frustrated right now.My fiancee has hep C,ESLD,and heptatic Encephalopathy,he is on latulose and Xifanan .Even being on both of these meds his ammonia levels are still high.I call him my 'turtle" because it seems like he is always in slow motion.His short term memory is terrible,and at times cannot seem to remember how to do the simplest things like taking the top off from a sippy cup ! He is now diabetic,on our 3rd med for that and have it no where near under control,his blood sugars are either to high ---> 200 or to low -->30's.He had had acute pancreatitis .His blood levels are all over the place,platelets have been running between 60,000-70,000 for about a yr now. His spleen is doubled in size.One of his blood tests are so high that it usually means he has cancer in his liver,yet after mri,catscan,and ultra sound it just shows the chirrosis.He sleeps 16-18 hrs a day.He was turned down for a liver transplant because even as sick as he is his Meld score was to low.We are both so frustrated now,I think me more then him because I know there is nothing I can do to make him better ! We both say "how much worse can it get " Are we doing all the right things? When else can anyone do to help us ? Any Ideas or suggestions ? How long can he go like this ? Thank you in advance fo any help and for just listening to me ramble on !

Post Edited (notenoughhelp) : 5/8/2012 2:40:55 PM (GMT-6)

NEH, I'm back, with clean teeth.

You are in a bad spot, or your fiance is in the bad situation and you are a helpless bystander to this drama.

My partner Mike was in the same shoes in the fall of 2010. Just change the dates and the situation MATCHES.

Including the cancer marker labs. They kept looking for the Heptocellular Carcinoma (HCC) to show up as it advertised itself for some time!

The point where they diverge is that Mike still had the attitude that he was just dying so why quit drinking? He felt his case was hopeless.

Well his GI doc gave him the runaround, was almost rude. Saw him every 3 months, put him on all the same meds and checked again the next time.

Mike was a slipping away from us.

For another purpose entirely, he was referred to a REAL hepatologist, and the story changed in ONE DAY.

The doc told him straight out...YOU WILL DIE IN THE NEXT 90 DAYS IF YOU DON'T QUIT DRINKING ALCOHOL. And for some reason, Mike DID. No longer did we hear the nonsense about he was just dying anyway. He learned that dying of liver disease is a bad way to go.

They required 6 months of documented sobriety for the transplant programs, and Mike had to LIVE to get on a list. He kept to his program, took his meds, slept his life away, was hospitalized several times, got transfusions, blew up like a balloon, vomited almost every day, looked like a dead man walking...a yellow dead man.

When they realized he was serious about his sobriety, they got him worked up at Jackson in Miami. BUT like your fiance, his MELD score dropped. He didn't feel much better BUT at 15 or 17, no liver transplant...just waiting and managing symptoms as best they could.

Then the best/worst news. That high cancer marker zoomed higher and they saw a tumor on CT scan. OH, NO, now he had cancer also.

There is good news and bad news in the cancer thing...it gives you extra MELD points. BUT it can get you disqualified if your tumor is greater than 5 cm...or the sum small tumors is greater than 5cm. And it may be a different story if the tumor invades the vessels.

Again, Mike was a lucky one. 2 cm. They found it at the end of Feb and he had his transplant May 1st...so he
was really "waiting" 2 months, when he KNEW his time was near.

In some cases they can treat the tumors to keep them small and still do the transplant.

But for Mike, it was the straw that brought the situation to a head.

Now, of course, he is a cancer survivor as well as a TX recipient...so they check him all the time. The next tumor (if there is a next time) isn't going to sneak up on him either!)

Good luck, hold on, and post often.

This group of patients and caregivers are very giving of their stories and suggestions.

Mama Lama

PS: Change the title of your post to something that brings folks to your posting: Fiance has End Stage Liver Disease...we need some advice... or some such.

Post Edited By Moderator (hep93) : 5/8/2012 4:48:52 PM (GMT-6)

NEH, to get into a transplant program, he has to have documented proof he is sober...from AA or a treatment center. Mike resisted, then reluctantly went to AA, but it was really good for him. The leader signed his calendar every day he went to a meeting. To see himself as a good man who drank too much, not a bad man who deserved to die of liver disease. He also had a blood ethanol draw weekly for 6 months to demonstrated there was NO alcohol in his blood. No mouthwash with alcohol, to alcohol swabs when they cleaned the site for the labs! They used betedine I think.

Yes, the test was Alpha Feto Protein test. It had been elevated for some time, and crept higher and higher.

Mike had no esophagean varices either. But he did have some GI bleeds, they had to plug them up in his small bowel.

He also had no ascites. Rather he retained fluid in his legs...like an elephant there for a while. Others have reported the same. Sometimes the skin wept pink fluid thorugh the ankles and shins. He could barely walk.

Mike took a couple of falls...so keep an eye. I always stood in teh bathroom when he showered when it was bad.

For me the H.E. was the worst. Because his mental status became negative and argumentative. He made me cry a lot. And I'd walk through fire for the guy, and feel like I have. It must have been awful to be him and know he was dying and just to wait the time knowing his liver was going and he had cancer and still had to wait.

We packed suitcases to be ready, took my cellphone to bed with us every night, bought double everything...toothbrushes, shaving cream, etc, so we didn't have to pack when he got the call. We are 125 miles fro mour center, so we had a drive to get here in the time frame they gave us...2 hours.

A decompensated liver can fail at some point. Generally there are other complications...infection, kidney failure...but if you read back some of the posts you will see that some pretty sick people got livers and worked their way back to good health.

And yes, your fiance can be sicker. Mike's platelets were in the 20's!

What center are you working with? Have they given you any indication of the average MELD score they translant at?

Hugs,

Carol

"The Dr actually said that people wish for cancer because they can get put on the transplant list quicker !"

That's how it worked for Mike.

Good they are doing the ethanol tests. Do they think that is enough to qualify over the 6 month required period...ie no treatment program? Or counseling?

To get on the transplant list they have to meet with a psychiatrist who will sign off if they believe the person is likely to remain sober and is well enough emotionally for the surgery.

By the way, Mike has amnesia for most of the last year before transplant. He can't remember the hospitalizations, visitors who came long distances to visit him, being an JERK, none of it. I gues that is good for the patients...not so good for the caregivers who remember every single second.

Our life together sober is very different. Though he is diminshed in many ways. He is 62 and hasn't worked in a logn time, and now he really couldn't do whaat he did, he hasn't the mental ability to be a computer consultant. And he can't do the yard work, etc. He just has lost so much strength.

Carol

ON the other side of this are these thoughts:

The transplant surgeries have a very high % success. That is partially because they triage their folks to find the candidates who are most likely to survive!  Our center is over 95% through the first year post transplant.

Folks with some underlying conditions are not so likely to make it after, so...

Some folks don't stay sober.

Some folks get so sick, so fast, there is no organ available in time. 

Some geographical areas have a higher demand on the organ pool...California, for example, requires higher MELD scores because they have so many folks waiting.

We were told FL was a good state, the average MELD score is in the low 20s.  I have heard that the VA doesn't transplant until the MELD is in the 30's. That would find someone really really sick.  We have heard that states with no helmut laws are easier to get organs than safer states. How sad is that?

Well, I've got to go for a while.  Nice chatting with you this afternoon.

Carol

Does your fiancee see a hematologist from the transplant center? I was first diagnosed as ESlD in May 2008. My care was transferred to a transplant center hep. I was not put on the UNOS list until October 2010. My meld fluctuates between 13-18 and is currently 15-16 the past couple of months. Too low for transplant. I need to be around 24 to be at the top of the list for my blood type. What is your fiancee's meld?

I also suffer from kidney stones, 3pancreatic cysts, and a liver lesion they are monitoring. I was hospitalized a total of 7 times last year. Mostly, for kidney stones. Ironically, it is my creatinine score, a kidney function test, that keeps my meld down.

I am currently thinking of possibly multiple listing in Florida. My parents live in Vero Beach and are close to several centers and the wait time is less.

Susie
Meld currently 15

They use a MELD score so that everyone has the same standard for a transplant. It's the only fair way to do it. I had a score in the mid to low teens for years. Then within a week, my score went to 18 and a week later 24. I received a transplant a few days later because my score rose so quickly, plus I was third on the list for my blood type. That and I was "the right size" according to my surgeon and was jumped over the two people in front of me. Later I was told that I was at most two weeks from death at the time.

Mine was similar. Until the 2nd HCC, my MELD was around 7 or so. They give extra points for HCC and also give extra points if there are certain criteria met, such as being on the waiting list a long time plus the unusual factors figured in. Sometimes this happens when the kidneys start to fail. As you can see from just a few stories here, most patients can crash overnight. He could have a MELD of 19, but then an unforeseeable event such as a bleed-out from esophageal varices or some other mitigating factor could cause it to jump by multiple points seemingly overnight.

I do want to mention that the AST and ALT do not factor into the MELD score. It consists of calculating the INR, bili, and creatinine, as well as if on dialysis. You can calculate it yourself if you have the latest lab scores done on these entities:

http://www.mayoclinic.org/meld/mayomodel6.html

The choice between diarrhea and being nuts is one the patient has to make, with the support of the caregiver. And believe me, the caregiver does not want to deal with the crazies. Some of the caregivers have some humdingers to report: Moonlight gardening in the nude and trying to put a pet poodle on his foot thinking it was a shoe are a couple that come to mind. HE can also cause a patient to become nasty and verbally abusive, combative, etc. A lot of the behavior is similar to that of Alzheimer's patients. So he uses baby wipes to soothe the anal tissue and some petroleum jelly to protect the skin from irritation...and retains some semblance of sanity.

Hugs,
Connie

Another question that I cannot seem to find the answer to,is there a difference between Alcoholic Hepatitis and Hep C or is it the same thing ? We know he has Hep C but then he has been referred to as having Alcoholic Hepatitis,therefore we get confused !

Thank you !

Sorry to be a bother here but I am still not understanding his AFF.Normal range is .0-6.7 Marks last 5 results are 8.6,11.1,20.3,11.8 and latest one is 12.6 Catscan,MRI and Ultrasound show no signs of a tumor,so why would these results be so high ?

sorry but i have more questions ! Is it common for people with ESLD to develop Diabetes ? Mark is now insulin Dependent,I read how some people have gotten better after quitting drinking,Mark just keeps going downhill,does this mean that his liver is to far gone to have it reverse itself? Will his Platelets ever return to normal,or his spleen go back to normal size ? This is another wierd question but when Mark is at his worse with the HE his body movements and speech are slow,like a turtle or Sloth as I call him,is this normal ? Again thank you for your help !

Prograf also makes transplant recipients more likely to develop Type II diabetes.