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Posted 4/16/2008 4:16 AM (GMT 0)
Hello all   I am hoping someone can help me with calculating a MELD Score.  I found a link but  it did not use the PT figures.  Vanderbilt told me they use the Creatinine, PT, INR, and bilirubin.  The calculator I used gave me a 16 for my husband.  I'm enclosing his number just in case someone knows how to figure it.

Creatinine    1.4

PT               17.7

INR              1.4

Bilirubin        1.8

Thank you for any help you can give.  I hope you are all having a good day.

JoAnn

Rainbeau I hope your Mr Wonderful is still doing good yeah

Posted 4/16/2008 8:46 AM (GMT 0)
JoAnn,

Just calculated MELD score (16) . You can try it yourself and get more information in, Google (The MELD Model, UNOS Modification). The PT is not necessary. Hope this is helpful. I've checked mine out on several occations and it always matches what the clinc comes up with.
Posted 4/16/2008 5:45 PM (GMT 0)

June  Thank you so much.  I did later in the evening try and got the same thing.  Girl what on earth are you doing up so late or should I say early???  Thanks again.  I think that MELD is getting up there.  I don't know if I should be scared or happy!  I'm sure you know what I mean.  His MELD a few months back was 18 then went to 17 then to 13.  I'm trying not to panic but its hard.  I will keep you posted.

JoAnn

Posted 4/17/2008 6:42 AM (GMT 0)
JoAnn : I am usually up till 3:00a.m. Ever since I found out that I have cryptogenic liver disease I have a hard time sleeping at night. So I read all the posts and try to see which way I'm headed. Also I try not to burden my husband any more than necessary . My MELD score started at 10 went to 9 six months later and now a year later it seems to have stablized at 9. So I was given the go ahead by Dr.s to get a few of my other health issues taken care of. Such as surgery on my feet. How is your husband doing? I am doing pretty good I think. Except for my foggy days, when I can't even speak coherantly. Good old lactulose to the rescue. Have a good day! june
Posted 4/17/2008 2:07 PM (GMT 0)

Hi June  Jerry is doing so so.  He had two really good weeks but has started to slide down again.  His lactalose is working but he gets the sleepies and falls a sleep in mid sentence.  Also the shaking gets really bad.  I'm just so scared he will be too sick to have a transplant when he gets to the top of the list.  I have no idea were he is on the list.  With a 16 MELD its hard to say.  Can I look that up!  It probably doesn't matter because it could change by the hour.  He is also having horrible itching problems.  I have to rub him down.  In the last few weeks I have noticed his veins in his feet and legs are showing really bad.  I'm sure something else is going to happen.  I'm thinking he might need another antibotic.  Vanderbilt keeps telling me they are used to people much sicker then him and I find that hard to believe.  The Dr. have told me its common  for some of the patients to be alot sicker then their score.  I'm not sure how that works.  Can they add points to their MELD if they determine they are sicker?  I thought you would know that.  Thank you so much for the info June.  It helps me to talk to someone that is in the same boat.

JoAnn

Posted 4/17/2008 11:37 PM (GMT 0)
Hi Joann and June
I am going thru the same thing with my husband. The intense itching is his bodies way of releasing the toxins, Ask your dr about cholestyramine. The hepatologist in houston put my husband on that and neomyacin. Those 2 combined with the spironalactin and lactulose has made a huge difference in my husband. He was itching so bad it didnt matter what we put on him or what we did, he would literally rip his skin out by the handfuls. Within 3 days of being on the neomyacin and grit ( what we call the cholestyramine) the itching only affects him after a shower, which has stopped since he started using oil of olay liquid soap for extra dry skin. Sometimes he will get to itching if he has had a bit to much protien in his diet or like when he had contrast with his MRI on tuesday, OMG I thought we were right back where we started but by wed night it had calmed down.
Good luck and I will keep you and yours in my prayers.
Therese
Posted 4/18/2008 2:29 AM (GMT 0)

Theresa  Thank you so much  I went into the medicine cabinet and we had some of the gritty stuff.  The kidney Dr. gave it to him last year.  He wasn't itching as bad back then.  I have already given him a dose.  As far as the neomycin I think that is an antibiotic.  It does sound familiar.   I'm going to call Vanderbilt tomorrow and see if he can get some.  This evening he is complaining of nausea again.  I'm sure its due to an infection again.  Here we go again!  I feel so bad complaining but this is so hard.  Thank you again Theresa. 

JoAnn

Posted 4/18/2008 8:01 AM (GMT 0)
Fortunately for me the itching only lasted a couple of months, and yes it usually happened after a shower. So I started using a loofa sponge to get rid of all the dead skin, then lots of body lotion. That seems to have helped. Knock on wood. My problem is the lack of sleep the last time I went for a checkup they told me I could use benadryl to help me sleep. Benadryl is a antihistamine which helps itching. Maybe It will help someone. I only tried it once , don't think I took enough because I didn't sleep that well. Im sticking to my diet , even though it difficult. You would think I would have lost some weight. Na ! Still holding which is good. I'm just trying to stay as healthy as I can and praying for some kind of mirical breakthrough in the near future. Although as we all know I was told by one Dr. I could live 6-9 years like this on the other hand he said "you could get severly ill in a matter of 48 hours and die. What uplifting news Ha Ha june
Posted 4/18/2008 1:43 PM (GMT 0)
The hepatologist has his taking 500 mg of Neomyacin 3 times a day to prevent infections as well as to kill off the bacteria that causes the itching and the ammonias increase. The grit is specific, cholestyramine, it grabs up the toxins from the gut and moves it thru the intestines without absorbtion. Hope this helps :)
Posted 4/19/2008 8:35 AM (GMT 0)
Misha : Sounds like the grit is like lactulose.



Joann: They do give points for every year and also for the degree of illness, but I am not sure how that works. One of the coordinators could probably explain it to you. Do you have a coordinator. They are there to answer any questions. Also the insurance assignes a nurse case worker that is alway available for anything. I just haven't really taken advantage of their support.
Posted 4/20/2008 3:50 AM (GMT 0)

June  That is one think that just drives me crazy about this disease.  Not to say that any disease is easy but sometimes I feel like I'm losing my mind.  Just about the time I think I have learned EVERYTHING about this disease.  I get blind sided again.  We were told that time on the list has nothing to do with the MELD score.  I did talk to Vandy yesterday.  We have a nurse practioner.  Its not always the same one that calls back but we have one that will be making the call when a liver comes in.  He told me that Jerry's MELD score is not high enough at 16 because of his blood type.  Its O.  AS I understand it that is good and bad.  Its bad because O can only receive a liver from an O but A and B can receive an A or B respectively and if they are on the top of the list and all that comes in is an O they can get it instead going down the list for an O.  I might have this all wrong it would be the first time.  I think thats why the surgeon told us Jerry's MELD would have to be in the mid 20's to even get close to the top.  I don't get that.  Also we do have a case manager.  The one we had before we got on the list was great he gave me a lot of good info.  Now we have a new one and he's not near as good but I need to give him a fair chance since he is new. 

Misha  Jerry is now on neomycin.  I don't know if I told you because of your e-mail I contact Vandy and he was suppost to be back on it.  They had him on it for 14 days then went off for 14 days then wanted him back on.  I didn't know that.  Just another one of those things I forget.  I seem to be doing a lot of that now.  I felt so bad because I swear I didn't remember.  That is really scarey.  I have a log I keep but I didn't write that in there.  Anyway his dosage is two 500 mg in the morning and two in the evening.  I'm curious about your husbands dosage and what his MELD is.  I'm so glad I read your e-mail.  This is just an example of how this forum helps.  He is also on the grit.  We are now at the end of day two and I really think its is beginning to ease up.  I really believe that the kind of itching this disease give would be a good form of torture.  Thanks again everyone.  

JoAnn 

Posted 4/20/2008 4:53 AM (GMT 0)
Joann, so glad it helped :) Right now we are going thru the itching torture even with all the meds because he cannot eliminate waste, therefore he cannot release toxins, they have no choice but to come back thru the skin. He takes 500 mg of neomyacin 3 times a day, I asked the dr about him drinking Danactive daily and he said that was a good idea to help prevent a yeast infection from the good gut bacteria being killed off along with the bad. Ask your dr aboutit first but I have always taken probiotics when taking antibiotics, same with my dogs.
My husbands MELD is 20 we were told, thats before factoring in the various other issues he has going on. I dont know if this hernia is going to wait for a transplant, it is now so large that it is bigger than his winkie, crude I know and I apologize, just no other way to put it.
June, the grit is made primarily to help reduce cholesterol, but they found that it is also a good vehicle to grab up the toxins and pass them thru as well. Shoot, if he were a horse( altho at times he is an ass, does that qualify??) I would just boil up some flax seed and add that to his mash hehe I have always used that to prevent sand colic and move a toxins or a sour stomach lol
Therese
Posted 4/20/2008 9:48 AM (GMT 0)
Joann: You are right about the O type blood. I am an A +.The Only (A ) I've ever had in my life . Just kidding. Anyway my husband is an 0 and wanted to be a live doner. But he is my only support . What would I do without him. I told the Dr.s I would not accept that and they have to abide by my wishes. My son also wanted to be a live doner. Again I could'nt accept . He is my only child. And has two beautiful children to raise. The doner is just as much at risk as the recepient. So I'll just waite for some kind of miricle. I really can't understand why they waite so long before they do the transplant. Seems to me if you get a liver at that point you ever be able to recover. I'm not saying that sicker people should'nt get transplanted. I just don't understand . Probably not enough doners. I've made lists of all my meds so my husband can help me sort them into daily containers. On the weeks I am in a fog. I take medications for hypertention.

I know it's against the Dr.s rules,but I'd like to know if anyone has tried a liver cleanse? That is supposed to rid you of the toxins. I also read that soaking your feet in epsom salts draws out many of the toxins like ammonia.

Misha: I used to take cholesterol lowering medication called Questran because I had chronic diarriaha after they removed my gallbladder. Now I take lactulose for the opposite reason. The Ironie of this desiese. I like your humor . NO WONDER MY HUSBAND SUGGESTED I START TO TAKE FLAX SEED .( I was probably acting like a horses )^^^
Posted 4/20/2008 3:27 PM (GMT 0)

Therese  I said that wrong.  Jerry is taking 1,000 ML twice daily.  You gave me a good laugh this morning.  I do have an Ass living in this house at time but I still love him.

JoAnn

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