MELD score went down :(

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cable poodle
Regular Member


Date Joined May 2011
Total Posts : 496
   Posted 11/28/2011 10:44 AM (GMT -6)   
ESLD SUCKS!! I am at my witts end with this. Today I was told my husbands score dropped 3 points with his last evaluation . . he is now on monthly. I explained that I thought it never went down on the list, even if the actually went down, that you never went backwards on the list according to MELD score, but I was told that is not true. I get my hopes up, and WHAM!! Burst that bubble . .I don't know how much more I can take!!
 
Debbie 

susie_sassafrass
Regular Member


Date Joined Jun 2010
Total Posts : 317
   Posted 11/28/2011 11:40 AM (GMT -6)   
Debbie,

Don't fret too much about the meld. My meld constantly fluctuates between 13-16. One month it is low. The next, it is higher due to fluctuations in my bilirubin level and inr. the only constant for me is my creatinine which is always under 1.

Susie
ESLD/Cirrhosis
Current meld 16

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4833
   Posted 11/28/2011 12:15 PM (GMT -6)   
Debbie,

Mike was a 23 or 24 in October 2010.

He was really sick.

He got on all the meds, got sober, was still really really sick, in hospital multiple times...but his MELD went to 16 or 17 with some packed platelets, some IV albumin, lots of IV fluids, salt restrictions, etc etc. With kid gloves, he got to the lower number.

BUT, he had a crisis, it jumped to 22 and they found a tumor, and he got his liver within weeks of the new crisis!

So you never know. If he is 16, then he can live a while like this.

Hopefully, his time will come soon.

And yes, it is hard.

Mike is 7 months post tx and he is having some hard days...he is Mr. Grumpy Bear for some reason. I hope they do an ammonia this week! His Hep C is out of control again, post tx, and that may be causing some problems.

Good luck, deep breath, walk around the block!

Carol
Mike received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/28/2011 1:01 PM (GMT -6)   
Debbie, my MELD was a 7 for the longest time (several years), though I kept feeling sicker. When a tumor was discovered March 31st of this year, my MELD jumped to 22. Just before transplant on Oct. 27th, I gained another 3 points for being on the list for 3 mos.

Hang in there!

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2076
   Posted 11/28/2011 1:12 PM (GMT -6)   
My MELD is very low at this time but during transplant evaluation it was all over the place . Yep , I feel your pain in regards to being off the list or monthly . Just gotta role with the punches and hope for the best .




A. Ziffle

cable poodle
Regular Member


Date Joined May 2011
Total Posts : 496
   Posted 11/28/2011 1:17 PM (GMT -6)   
What I had understood is that your listed MELD score never goes down. If you are a 23 at evaluation and the next evaluation you are a 20, I understood that it would stay a 23 not go to 20. That is not the case. I also understood that very 3 months you gain 3 points, but that is not the case either. Those 2 items only apply if you have liver tumors/special circumstances.

Debbie

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/28/2011 1:50 PM (GMT -6)   
I had NEVER heard that your status on the list would NOT go down if your MELD decreases. The status is determined by the MELD, which is changeable. As for the 3 points for every 3 mos. on the list, the committee reviews the case and will allot the 3 points if there are special circumstances (such as tumor or or other medical problems) that would necessitate getting a transplant ASAP.

I know it's frustrating, but hang in there. Things can change in a minute.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 11/28/2011 2:44 PM (GMT -6)   
cable poodle,
I think you're letting your hopes temper reality. Your score is what it is the last time it was taken. I hovered between 12 and 17 for 8 years. Then, in a couple of weeks time it went from 16 to 18 and a week later jumped to 24. Three days later I had a transplant. Having my MELD go up 6 points in a week indicated immediate liver failure. In the 5 years I was in the transplant program, I never asked (and they didn't say) where I was on the list. It was better that way for me. No wondering or agonizing over what was going to happen. As in "a watched pot never boils."
Have a nice day!

cable poodle
Regular Member


Date Joined May 2011
Total Posts : 496
   Posted 11/28/2011 7:24 PM (GMT -6)   
I am suffering mentally over my husbands health . . I love my husband and it breaks my heart to see him suffer. I am not one to not do anything or just wait. I want to know whats going on, why and when. It's how I stay organized, and it keeps me from going insane. Its extreme sometimes, especially when my loved ones are hurting or suffering, but its me. I'll get thru this too . . thanks for the input everyone.

Debbie

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2076
   Posted 11/28/2011 8:02 PM (GMT -6)   
Debbie , Sometimes things are just not in our hands and this is one of those times . Not to put false hopes out there but your husbands MELD going down can be taken as a improvement . Nobody knows how these things will turn out . One thing for sure from my own experience these things can take a slow turn for the better . I hope you both will be fine .


A. Ziffle

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 11/28/2011 9:41 PM (GMT -6)   
Deb, I'm the same way about my own health. I want to know what I'm dealing with, what the treatments will be, how long will this go on, etc., etc. But in this post-transplant period, which is rather volatile right now, I've really had to "Let go and Let God." Many times, I've said the Serenity Prayer, over and over. If nothing else, it calms me:

God grant me the serenity
TO ACCEPT THE THINGS I CANNOT CHANGE,
Courage to change the things I can,
AND WISDOM TO KNOW THE DIFFERENCE.

In other words, loosen the control reins and trust God/Higher Power/something greater than yourself, and medical staff that all will work out just as it should..

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

cable poodle
Regular Member


Date Joined May 2011
Total Posts : 496
   Posted 11/29/2011 8:41 AM (GMT -6)   
Debfromcanada, I belong to a group, Hepatitis and Liver Disease of Tampa Bay, and they have alot of memebers that do the trials. To me it's scary, but I am learning alot there. We are hoping to find out more about Geno Types thru this group. It's a number they assign you as to the location where you were infected with the virus. If my husband has 2 Geno Types, he may qualify for full disability thru the VA.

The misinformation is really depressing . . you get your hopes up and then wham . . you are so right!! I told my husband, I am not calling up to PA again. I'll let his doctors here handle it. I should be thankful, we have changed his meds so many times, and now seem to have them the best they have ever been for him in keeping him stable and still getting some water off. He's actually been out of the hospital for more than 2 weeks!!

Thanks again for being there everyone . . I was having a real bad day yesterday!

Debbie


Corrected spelling of disease. C.

Post Edited By Moderator (hep93) : 11/29/2011 8:57:59 AM (GMT-7)

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