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Posted 2/5/2013 8:57 PM (GMT 0)
Mark saw the liver Dr yesterday,he wasn't full of good news ! Mark has ascites in his belly,confirmed by ultrasound this morning. He put him on 50 mg of spironolactone ,said the lasix would be to hard on his liver ! Dr put him on a liquid diet today to see if maybe his gastroparesis was acting up,because Marks belly is so hard,and hes short of breath and belly hurts ! Ultrasound showed no signs of any cancer on his liver ! Thats the good news. Here is his blood work, Glucose was 340,that was after insulin ! His AST went from 80 to 107 and his ALT went from 65 to 124. The biggest puzzle to me is his AFP,,,,normal is 0-6.7,,,last July, Mark was at 8.6, yesterday he was 33.6. Dr said his liver is getting more decompensated .I very much trust the info you have given me in the past,what are your thoughts on this newest stuff ?
Robin
PS,His AST and ALT changed that much since last Fridays blood work ! confused
Posted 2/5/2013 9:11 PM (GMT 0)
If his lab work has changed that much, it suggests that his liver disease is progressing. The AFP rising that much leads me to think that they are missing something. I'd ask for an MRI with Gadolinium contrast.

He hasn't been drinking, has he? That would cause an elevation in his labs.

Lasix is hard on the kidneys, not the liver. I've been on it since before transplant.

Hugs,
Connie
Posted 2/5/2013 11:27 PM (GMT 0)
Hes not drinking,so I am assuming he is just getting worse.I sent a message to his liver Dr asking why his AFP would be that high and he said that it means that the cirrhosis is progressing.He did tell us to that the Alcohol that he used before so badly is not whats making him so sick now,he said the damage from that stopped when he quit drinking,he said it would be the Hep C causing the havoc on him now, and again told us that Mark is in no way,shape or form a candidate for Hep C treatment,he said the Cirrhosis is to bad !
Robin
Posted 2/6/2013 12:18 AM (GMT 0)
How bad.

What is his MELD score?

Can be calculated  from INR, Creatinine and Billi.

< 20 not so bad.

> 20 almost transplant time.

Carol

Posted 2/6/2013 12:56 AM (GMT 0)
Exactly. What is his MELD? Here's the link to calculate it:

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

If his cirrhosis is too bad for treatment, I'd think transplant would be next. I also disagree with the doctor that alcohol has not played a large part in his cirrhosis. It takes a long time (at least a year) for the body to come back from what alcohol has done. If cirrhosis, then it won't reverse, but can be slowed with proper meds and diet.

Hugs,
Connie
Posted 2/6/2013 1:06 AM (GMT 0)
Is he going to AA to document his sobriety?? He'll need documentation of his sobriety for a transplant..

Sandia
Posted 2/6/2013 12:25 PM (GMT 0)
Meld score is only at an 8 ! Dr is puzzled as to why he is so sick and yet meld is so low ! Mark wont be going to any AA meetings right now as The Mental health Dr and Liver Dr said he needs to be mentally fit before anything else ! Dr and I both agreed in private that right now,Mark could not handle a transplant mentally,and Transplant team would not even consider him right now,until he is mentally stable ! I ended up calling the Dr last night again,Marks belly is so swollen that the blood vessels on his belly were starting to rupture ! He said they are going to start him back on Lasix and that he may need his belly drained if he is no better today ! Dr did say that mark is in active liver failure as of right now,but if they can get him stable he can pull back out of all he is going through right now !
Connie,you are correct,it is the kidneys,not liver for Lasix,I asked again last night,I misunderstood the Dr on that !Marks INR went back to normal ,just barely and as did his bilirubin,yet he is still yellow in the eyes ! I just cannot believe how sick he is getting so quick right now !
Robin
Posted 2/6/2013 1:15 PM (GMT 0)
Robin , When you mentioned he overdosed in another post I figured this was gonna happen . The only defensive measures I can think of for him at this point is to go and get professional counseling right now , In my mind this should take care of both mental issues ( Alcoholism & Depression ) . He set himself back when he pulled that overdose stunt and magnified a major issue for the transplant team .

 Things look impossible to overcome sometimes when your sitting in the midst of the storm . It can be overcame but he is now gonna have to work twice as hard to prove himself worthy of the operation . There has been instances of people here contacting AA members to come to there house for counseling , I know I was so sick myself at one point and still made it to my bi-monthly counseling ( Shrink ) . This is where he will either choose life or death and there's no other option . Myself I gambled on life when I was in his situation , I say gamble because that's all it is . There's no guarantee of life just because he suddenly wants it , but for me I felt better knowing I was fighting this to my death . No giving in .

 I'm puzzled as to why his Doc is puzzled . MELD scores don't always reflect how sick a person feels and that seems to be a common knowledge across the board for patients and doctors alike . Ask David where he was a day before his transplant ? Not always , but sometimes people seem perfectly healthy with high scores and other may feel near death with low scores . It's the nature of this disease , It strikes when you least expect it and how you would expect it .

 Get him drained ( Paracentesis ) followed up by albumin and see if he's willing to go to therapy .

A. Ziffle

    

Posted 2/6/2013 1:46 PM (GMT 0)
Ziff (I hope its ok to call you by that ) Mark has his 1st appt today with a therapist ! Also has a foot Dr appt,and waiting to hear back from Dr,already put a call in to him,nurse said she would get the message to him right away ! This is a roller coaster ride from hell that I know I don't like one bit,I am helpless here,about all I can do at this point is encourage Mark and get in contacts with Drs !
Posted 2/6/2013 2:33 PM (GMT 0)
Ziff is correct: Labs don't always reflect how sick a person is. Prior to transplant, my MELD was an 11. When liver cancer returned my score was raised to 22. After 3 mos. on the list, I got another 3 points, for a total of 25 at the time of transplant. Following transplant, I only had normal liver panel for a month or so, when the hep C started destroying my new liver. At this time, I'm waiting for treatment to be approved.

What you are doing is more than enough. Mark has to do his part now.

Hugs,
Connie
Posted 2/6/2013 3:28 PM (GMT 0)
That whole MELD thing is good for some things.

But I got the brilliant idea to calculate Mike's MELD and it hovers between 12 and 13 AFTER transplant.

Not heartwarming.

But his kidneys have not bounced back well...and those numbers are heavily relying on kidney function...so...

He is alive...and not in pain...doesn't have edema, and doesn't have HE.

So, again, today is a GREAT day!

Post Edited By Moderator (hep93) : 2/6/2013 8:47:43 AM (GMT-7)

Posted 2/6/2013 3:58 PM (GMT 0)
ML, I just calculated mine and it is a 9, based on today's labs.

Hugs,
Connie
Posted 2/6/2013 5:51 PM (GMT 0)
Connie,how do you feel at a 9 ?
Posted 2/6/2013 7:29 PM (GMT 0)
Constantly fatigue/tired from the hep C.

Hugs,
Connie
Posted 2/7/2013 12:53 AM (GMT 0)
My AST and ALT were low up to about 16 months ago. It started to spike up in the High hundreds for a couple of liver function test. I think the lasix would bring both down. 50 mg.'s of Aldactone isn't much. I called my hepatologist and he didn't seem to be too concerned with that. Although he asked me if I had any alcohol or drugs lately, but he usually does that every time I have an appointment or call him. He was more concerned with the creatine, biliburin and the INR which calculates your Meld Score. He said it just fluctuates sometimes. My Meld scores have been at 8 or 9 since I became decompensated, but that could change quickly. Plus, I don't have diabetes and kidney problems like Mark does. You have to watch out for Mark's feet, ankles and shins getting any cuts or scrapes. Avoid walking around barefoot even in the house. I still have a little edema in my legs and feet. From my shins which are all red to my feet and toes which are a brownish, reddish, purple color. My doc said to avoid any cuts on your shins ,feet, ankles or toes because it will take a very long time to heal or could get a bad infection. With diabetes it could be a very big problem.
Posted 2/7/2013 2:42 AM (GMT 0)
I cried a river of tears because Phils MELD was so low for as sick and bad off as he was!! It got high real fast once it was in the high teens. Getting all the things done to get on the list takes time .. . .geterdone . . before you know it, it'll be his turn!!

Good luck!!
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