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Posted 5/21/2011 6:43 AM (GMT 0)
hi all thought i would start a new post as the other was getting long and dont want to put any more work on connie if she had to lock it.x

mama lama,, i did as you suggested and went to mayo website to use their meld score calculator with hubbys last blood results.

i got 79. mortality rediction of 1.

thats bad huh? i did it again, twice more, its not faulty, i got 79. prediction of mortality 1. confused

so i take it the docs here know what a state he is in and just dont want to say. how is he still functioning? i dont understand. im scared now too. hes not gonna get off the alcohol quick enough is he.

what does this 79 actually mean? how bad is it? all thoughts welcome please.xxnatasha.xx

Posted 5/21/2011 6:54 AM (GMT 0)

Natasha, try this site for his MELD score calculation:

http://www.mdcalc.com/meld-score-model-for-end-stage-liver-disease-12-and-older

It's what I use and it is the exact same number as Mayo gets for me.  I've never heard of anyone having a MELD that high.

Hugs,

Connie

Posted 5/21/2011 6:59 AM (GMT 0)
thanks connie, il give it a go. how are you doing?? your such a diamond.xxnatasha.xx
Posted 5/21/2011 7:05 AM (GMT 0)
okay, this one gave me meld 56. how can they be so different when they ask for the same details? very confused. is 56 much better though? im slightly panicking now and very confused.xxnatasha.xx

Post Edited (wifeofdrinker) : 5/21/2011 1:40:20 AM (GMT-6)

Posted 5/21/2011 7:13 AM (GMT 0)
just calculated his child pugh score and that comes back at 11. surely that would be a 15 if his meld was that high? do you think it might be a difference in blood results, english/american? maybe they measure it differently here and thats why its coming back so high?xxnatasha.xx
Posted 5/21/2011 7:46 AM (GMT 0)

Could be, Natasha.  I'd go with the link I gave...56.  As I said, my score on there jives with what Mayo gives me...at least for the base score.  Having cancer, it zoomed from 6 to 22 automatically.  The calculator doesn't account for cancer or other problems that could raise the score more.

Regardless of what it is, I think your husband is a very sick man.  If he continues to drink he will only get sicker.  And then he will surely regret that he didn't stop when there was still a chance for him to turn things around.  He should be able to stop now without dragging it out with "cutting down."

Hugs,

Connie

Posted 5/21/2011 8:06 AM (GMT 0)
thank you connie. im so grateful for your advice especially as you are going through such a gruelling time.
i just dont know what will happen with hubby. i think deep down i dont hold out much hope for him. we are seeing him today so will tell him what i have found out and see if that gets in. i can but try. my poor babies. i still cannot understand why a parent would put their children through this when he has the power to stop it or at least give it his all. thank you again connie.xxnatasha.xx
Posted 5/21/2011 8:43 AM (GMT 0)
Does the uk use the same blood measurements as the US? I know when I put my blood test results in the calculator it told me my meld was 52, so I checked the other box (SI) where it shows units and I got a six. One box is US and the other SI.
Posted 5/21/2011 8:54 AM (GMT 0)
WifeofD,

Key your latest figures here along with ***exactly*** the units of measurements you have. Thats most important.
Some calculators online vary - and so do some units of measurement.

Enter each value here - along with mmol, mg/dl or whatever it says on your sheet and I can 100% be sure to sort this for you.

Also be sure to enter any words here which come after the test type - on the same line as the test type.

Just give everything letter for letter basically which is part of any input to an online calculater.

I have good calculators for both the C/P and MELD

Also - others may point out something if theres anything odd aswell for you.
Posted 5/21/2011 9:30 AM (GMT 0)
okay, creatinine 46 umol/L
bilirubin 42 umol/L
inr 6.9 UNKNOWN UNITS/ 1min.rpt.

thats exactly what it says on paperwork. these are what i entered.
Posted 5/21/2011 9:53 AM (GMT 0)
okay, just found a european meld calculator and i got 31.
very confusing!!!!! you think it would be the same owing to them using the same blood results!!!!
Posted 5/21/2011 9:53 AM (GMT 0)
I entered those figures you just gave on the calculator and got 25. When I put it in and clicked the US box I got 79. The United States uses different blood units so you have to be careful to tick the box so you use the SI calculator.
Posted 5/21/2011 10:02 AM (GMT 0)
thank you hepmom. so 25 is better, will check the m.prediction on that. so not so much of a panic then. still not good though. thank you.xxnatasha.xx
Posted 5/21/2011 10:04 AM (GMT 0)
No, 25 is still not good :(
Posted 5/21/2011 10:07 AM (GMT 0)
Where do you find out the mortality prediction?
Posted 5/21/2011 10:11 AM (GMT 0)
its something to tell hubby about later. however i will ask the specialist to do a score on him when we visit next month. they will have more recent bloods by then too. thank you all for your help, i love coming on here, thank god for h.w. and all you guys!! xxnatasha.xx
Posted 5/21/2011 10:13 AM (GMT 0)
i typed in meld scor and wikipedia explains the percentage of mortality rate against the score number. predicts survival of 90 days.x
Posted 5/21/2011 1:58 PM (GMT 0)
Remember that MELD scores aren't the end all, be all. My scores were in the teens for years, then went to 18 and a week later 24. The jump of 6 points in a week is why I got a liver. At MGH, they normally don't do transplants until the score is over 26. Anything over 20 is something to worry about.
Posted 5/21/2011 2:19 PM (GMT 0)
well, we have spent some time with him this afternoon, the children were happy to see him. im not sure if its because i havent seen him in a while but he looks awful. gaunt, thin, can barely walk, he broke a plate just trying to pick it up because his hands are also in bad shape. he looks very red and his eyes are back to being yellow.
i explained all about the meld score and do you know, he laughed and said, ha just you wait, il be around for years! i said, yes you could be if you stop drinking and he merely replied, "either way, im going to be around for years".
im dumbfounded. he STILL dosent get it and STILL dosent want to. i dont see what else i can do. im so angry with him. we arent seeing him again untill next saturday, providing he can still walk by then. im at a loss.
meld score for 25 has a predicted mortality rate of 19.6% for 90 day survival. is that for or against??.xxnatasha.xx
Posted 5/21/2011 4:09 PM (GMT 0)
Wifeof - I have put your figures to a man in the know. I too get 25 but the INR is something I have asked about to be certain.

Someone else may confirm this for you - the 19.6% is the mortality rate - so at 90 days - 19.6% of people with a score of the range in which 25 sits will have passed away.
Effectively - as you put it - this is really "for" - as the other way around is that 80% will die.

This is as I interpret it - others may correct me.
Posted 5/21/2011 4:13 PM (GMT 0)
thank you. i pretty much thought that was the way it was. gosh not good.
you have to have blood results for liver function tests to work out the meld. did you see a doctor then?!.
gosh 25 still not good is it.x
Posted 5/21/2011 4:51 PM (GMT 0)
no - its not good and with beer its not good.

no :/
no doctor (not for my liver anyway).
Posted 5/21/2011 5:18 PM (GMT 0)
ok.
he is still drinking. exactly how much now im unsure of as he is with his sister but he is still on quite a lot. he is going to let this kill him isnt he...x
Posted 5/21/2011 5:46 PM (GMT 0)
Natasha-
I am so sorry you are going through this. I am sure your emotions are running wild...and imagination going crazy...uncertainty, fear, anger...the whole range. Remember that this is not your fault. Even though alcoholism is a disease, your husband needs to take responsibility for his well being and health. I know you know that you cannot do it for him. He will have to choose to fight. Look how sick some of the forum folks have been...and they have quit the booze and stayed sober and gotten a transplant. A rebirth. It can happen.

Once the initial storm calms down, take a deep breath and start to make a plan. In baby steps, because if your husband doesn't stop drinking, his health will continue to go downhill...and the end isn't a drunken party...it's hard...and heartbreaking. Sandi (arneeb, Sandia) has posted some really good ideas about making a plan. Be sure that you have the proper legal documents to ensure that you and the children are cared for...wills, life insurance, etc.

I believe in never giving up hope. Be prepared, but always know that things can turn around. I will keep you and yours in thought and prayer.

Emma
Posted 5/21/2011 6:13 PM (GMT 0)
thank you emma.
as far as legalities go, he has no life insurance, owns no property, in fact owns nothing.
i have life insurance and also provisions for my children should anything ever happen to me while they are young.
his family would help me with any costs when the worst happens.
i am angry but its less intense than when he was living here. i guess i feel slightly removed from the situation now. i worry, of course. i pray for him, but i dont see that theres any more i can do right now.
i have come quite a way emotionally with the help of yourself and others here and the support i have had in all my decisions.
thank you all so much. now i guess i play the waiting game.
have my boys to keep me busy though and i thank god for them every day.xxnatasha.xx
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