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Posted 10/19/2012 5:14 PM (GMT 0)
Hi All,I haven't been posting on here,been rather depressed with the whole situation,but I do check in to see how everyone is ! Mark seems to be going downhill here,he is down to eating just 2 times a day(and I cant call them meals even,they are more like a snack),and then sleeping the rest of his life away ! His ammonia levels never come down to normal no matter how much meds he takes,its staying between 55-93. His platelets are down to 62,000,alt and ast are just slightly elevated now.Red count keeps going down,its running low now,but Dr doesnt seem concerned. Billirubin runs high normal as is his pt/inr. The one test that keeps going down lower and lower is his Albumin,its abnormally low for the last 3-4 tests but today was the lowest yet.So now my question,what does it mean if the Albumin is low? And are all these test results normal for someone with Hep C and ESLD ?
Robin confused
Posted 10/19/2012 6:28 PM (GMT 0)
Hi, Robin, and welcome back! I'm sorry to hear that Mark is not doing well. I have hep C and the only time my liver enzymes were normal was in the couple of days post-transplant. My last labs showed ALT nearly normal at 49, but AST at 117 (normal is 8-43.)

It seems strange that Mark's labs are so low with hep C. He can get an albumin drip, and should when he has paracentesis. Is he being drained at all? And how much Lactulose is he on?

Albumin is a protein. Since he's not eating much, he's probably not getting enough protein.

Remind me if transplant is an option. Also, please know that he is not "sleeping his life away" on purpose. It's the hep C. It makes one so tired out that he can barely function, and can't keep his eyes open.

Hugs,
Connie
Posted 10/19/2012 6:41 PM (GMT 0)
Hi Connie,thanks for writing back so quick ! He is not on transplant list yet,Meld to low still,up one pt to a 7 now ! Hes got belly fluid but not enough to play with yet also.He has cirrhosis from his drinking,,sober yet again and has been since his 1 slip up in June I think it was.If his Hep count went up more could that make him feel sicker ? I try to read up on this stuff but sometimes I just dont understand it unless its in black and white ! He has no muscle mass at all,he is skin and bone except for his belly,and hes got "man boobs" now to.
Posted 10/19/2012 7:34 PM (GMT 0)
I forgot to mention his Lautulose,he takes 30 ml 2-3 times daily,and he is on Xifanin 2 times daily.
Posted 10/19/2012 7:41 PM (GMT 0)
Robin, is he taking Aldactone (diuretic?) That causes the "man boobs." I'm not sure what you mean about his hep level meaning he's sicker. Do you mean viral load or liver enzymes going higher? I was at a 7 for quite a few years, then it went to an 11. When an MRI showed cancer, that bought me an automatic 22.

The sobriety Mark has now will not be counted unless he has attended AA meetings all that time and it has been documented. Of course, he is likely too tired out to go to meetings. I'm a sober alcoholic and had been sober 25 yrs. at the time of my transplant, so it was a non-issue.

Since he's not eating much, he's not getting enough protein. The body uses up the fat and when that's gone, it starts taking muscle; thus, muscle wasting. This can be helped somewhat by using small weights to do upper body exercises.

Hugs,
Connie
Posted 10/19/2012 8:02 PM (GMT 0)
He doesn't take any water pills,Dr said he doesn't need them yet ? Mark has been sober for the most part for the past yr,he slipped 2 times for a 1 day drunk ! From someone who was drunk on a daily basis and was drinking a 30 pack of beer,plus a pint of straight vodka a day,plus worked,I think its great,not saying a slip up is good,just saying good about the sober part. The Dr knows he is not drinking because they do blood alcohol draws on him ! And yes,I meant viral load for the Hep C,if that went up could it make him feel more sick ? Another question I have is this,I read about people getting better and back to a near normal life after getting off of the booze,that has not happened with Mark and I was so hoping it would.Is that because his liver is to Decompensated already for it to get better ? Sorry for so many questions,i just get so confused !
Posted 10/19/2012 9:09 PM (GMT 0)
I agree that what sobriety he has now is great, despite the 2 slips. However, transplant centers feel differently and do require 6 mos. of documented sobriety in a program for people still drinking or who recently got sober, if a transplant is being considered.

The increased viral load means the hep C is becoming more aggressive. Those who drank and got sober are now doing well, but they are ones who don't have hep C. It's like me....sober 26 yrs., had a liver transplant a year ago, yet dragging around and have higher enzymes and VL than I did prior to TP. My liver never was decompensated. It was the tumor that made a transplant necessary. If it weren't for hep C, I'd be doing really well now.

Hugs,
Connie
Posted 10/19/2012 9:27 PM (GMT 0)
Robin,

His blood tests aren't that bad.

And I am wondering about why he has not rebounded better -- and go back to the not eating. I knew Mike was not eating right and made sure he got some protein in him with the Ensure or Carnation Essentials, shakes with ice cream and fresh fruits.

Id' ask the transplant center about whether the ethanol draws are enough to document his sobriety...each center is different. Would they consider that enough? Does he see a counselor?

In the end he will have to see a psychiatrist before transplant who will write a report about the candidate indicating whether they think the person:

Is he mentally ready for such a huge surgery.

Will likely be compliant with meds and protocols.

Will likely attend all appointments.

Is likely to remain in a sober state going forward.

They asked Mike a zillion questions and wrote a 4 page report that he would comply, that they didn't think he would return to his previous alcohol use, and that he was not fearful of the surgery or depressed at that time.

Each time Mike was in the hospital for kidney failure, or sepsis, or pancreatitis...5 times in 6 months before transplant they gave him the albumin drips. He never had a parencentisis...BUT, he felt better within hours of the albumin drip!!!

Best to you both,
Carol
Posted 10/19/2012 9:34 PM (GMT 0)
So you are saying you didnt have HE and all of the crazy stuff that goes along with all of this ? I remember when Mark was drinking his AST and ALt would be at 300 or more,the Dr always told him he was lucky to be alive ! He would lie to the Dr back then and tell her that he wasnt drinking anymore then she would do the blood work and she knew right away by his counts,that he was lying ! We are pretty sure Mark has liver cancer by his alfa fetoprotein because at his last count it was over 12,000 but it hasn't shown up on a scan yet,we see the liver Dr next week and Mark is due for another scan then,its crazy,how you don't want him to have a tumor yet,its probably the only way he can get on the Tp list ! He said he will go to AA meetings,but its kind of pointless right now to go because his meld is so low and if it takes him a couple of yrs to get on the list he will have to do it all over again as I am quite sure they wont take documentions from a yr or so back !
Posted 10/19/2012 10:04 PM (GMT 0)
NEH , He will be monitored during his pre-transplant evaluation for the required documentation . This period will get his foot in the door , and afterwards if his situation remains stable and he gets approval they will monitor him every three to six months there after . He will have completed the required documentation and as long as he is keeping up with his appointments as scheduled he shouldn't have to repeat the 6 month sobriety documentation . Think of it as insurance in the event he should take a turn for the worse . He shouldn't shrug this off , He may not be able to comply later .



A. Ziffle
Posted 10/19/2012 11:16 PM (GMT 0)
The amount of lactulose needs to be increased if he's still having HE. I needed as much as 30 cc.,8 times a day at one point. Try doubling his current dose and see if that doesn't help.

It's never too early to get approved for a transplant, so now's the time for him to get his 6 month documentation. He could go downhill quickly at some point and then it might be too late to wait 6 months.
Posted 10/19/2012 11:21 PM (GMT 0)
Thank you for all of the info ! I think on Monday I will call the transplant center and talk to the nurse in charge that I had talked to quite a bit and see if I can find out what they need for documents with his staying sober and go from there ! I cannot believe how bad his brain is being affected by all of this,he doesn't retain info,and then just always has a blank stare,its creepy !Thank God you cannot over dose on Lactulose,last month when his ammonia level went to 93 the Dr switched him to the 30 ml 2-3 times a day,,,he forgot what she said to do and took all 3 doses at once ! When he kept running back and forth to the bathroom,i thought he had caught a stomach bug,he said no,it was from the med, that's when he told me what he did ! I laughed till my belly hurt,now he makes sure to ask me first ! Still cannot get him to eat anything,,that drives me crazy ! Shake,once a day,a banana,maybe a vanilla pudding and a fish sandwich,oh and I cant forget his poptarts that he eats every single morning ! And that is the exact extent of what he eats ! No veggies,beans,meat chicken and only a banana for fruit,no casseroles either.I have learned not to harp on him with his eating,it only makes him mad and me frustrated,I cant make him eat,so its his choice,just as his drinking was !
Posted 10/20/2012 12:10 AM (GMT 0)
Try giving him Carnation Essentials twice a day. It has all the nutrients he needs. I didn't have much of an appetite when I was all blown up, and that's what was recommended to me. What about fresh fruit?

As for HE, no I never had it, but Carol's Mike did. I wasn't decompensated, which is why I wasn't affected. I never was jaundiced either. I did have severe edema and fluid below the skin in my belly, which was drained once.

If a scan shows he has hepatocellular carcinoma (HCC), he will automatically go to 22 points. I agree that he should start evaluation for TP while he is able to.

Was he ever treated for his hep C?

Hugs,
Connie
Posted 10/20/2012 1:17 AM (GMT 0)
Muscle wasting had me down to 145 lbs. from a normal weight of 210 lbs. . Looking back on it my eating wasn't very healthy to start with , Mainly junk food prior to getting sick . I paid no attention to what I ate and just figured I was healthy due to physical activity at my job . Said it before , but quitting a life long career of drinking was easier than changing my diet . I never knew how much salt I was using until I couldn't have it anymore . Food was just bland . I became terrified to eat anything that might cause me to have another Paracentesis done more frequently than it already was . Another thing I believe had to do with eating or lack there of resulted from my stomach contracting ( I always felt full ) or maybe it was all the fluid that had me feeling full . Just my perspective of course .

For the sake of not upsetting others here , I certainly could have your side splitting from tales of myself and Lactulose . I'm trying to be good for the moment . smilewinkgrin


A. Ziffle
Posted 10/20/2012 3:02 AM (GMT 0)
For several years I spent much of my time on the toilet. It beat feeling stupid, when I didn't take enough lactulose.
Posted 10/20/2012 5:18 AM (GMT 0)
Don't know if this would work for you, but I add fruit and veggies to the shake (smoothie).  Added an avocado one time, spinach one time, etc.  BUT...have to do it so hubby can't see it.  If he watches me put these things in, he has a FIT.

If it isn't sweet enough, I add sugar free syrup.  Also put Boost in smoothie...again he can't see me do it.  He wants to tell me what NOT to put in it or what to PUT in it.  Control issue, I think. (Sounds like your hubby may also have some control issues.)  So I always do it when he's not looking. 

Feel for you about the HE.  That blank stare makes me crazy....I can be talking straight on to him, he'll be looking right at me and say, WHAT.  Or hears me but has no idea of what I said.  Aaaaaagh!!

My hubby is a lot more clear thinking once I took him off the anti-depressants.  Dr. says they acted the opposite way of what they were meant to do.

Hope things change for the better soon for you both.

Angie1953

 

Posted 10/20/2012 3:45 PM (GMT 0)
Sometimes you just have to laugh instead of cry ! Mark inspects everything he eats,so there is no sneaking food into him ! He wasnt taking his lactulose right until the Dr told him he would go into a coma and end up with one tube down his throat and another up his a**,he chose the meds ! Same thing is going to happen with his eating,whether its a control issue or not,one day he will end up with a feeding tube and then he might get it ! Is the AFP test a true marker for liver cancer ? The Drs make it sound like he has a tumor,but its just not showing up yet,mainly because of his AFP test.
Posted 10/20/2012 4:11 PM (GMT 0)
wow...ya that would make it hard to sneak veggies and fruits in. Makes me feel lucky today. Thanks for the upper NotEnoughHelp.
Angie1953
Posted 10/20/2012 7:09 PM (GMT 0)
NEH, yes, the AFP is an accurate indication of liver cancer when it's high. It was a tip-off to cancer the last time as it kept steadily rising. The first cancer took up the entire rt. lobe and metastasized to the inferior vena cava, all very clear on US and MRI. So the AFP wasn't considered.

Hugs,
Connie
Posted 10/26/2012 2:32 PM (GMT 0)
In my heart,I honestly think that Mark is giving up when the real fight has not even begun yet ! He was doing water therapy for a little bit and it didn't really help but it gave him exercise that he needed. He stopped going because he says he just feels to sick and "blah" to go to it ! All he does is sleep,the only time I can even get him out of the house anymore is to get blood work and see his Drs .It is so frustrating to see him waste away like he is. I have tried so hard to keep him upbeat,but its useless anymore.Just once I would love to see his old smile and laughter ! He has an appt next Tue the 30th with both his liver Dr and regular Dr,weather permitting of course because it looks like we are going to get a direct hit from this hurricane coming in,,,so hopefully we get to see the Drs and maybe find out if something new is going on with him !
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