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unable to work,what meld you had?

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Posted 4/27/2014 12:52 PM (GMT 0)
hello dear friends,

can some of you tell me at what point/meld score were you no more able to work,and what is/was your job?

thanks for some input
Posted 4/27/2014 1:48 PM (GMT 0)
I was still working when my MELD was 33. I did not realize how sick I was. Yoy can have a low MELD and be very sick.
Posted 4/27/2014 2:29 PM (GMT 0)
Wow,33 is pretty high.didn't you feel sick as hell?
my meld is always between 6-9 depending on my bilirubin,and I wonder if one can feel so sick with such a low score.
Posted 4/27/2014 11:58 PM (GMT 0)
Yep, You can be sick as a dog with a low MELD or seemingly healthy as a horse with a high MELD. MELD hasn't alot to do with how you feel at the moment. I am a Iron worker and crane tech by trade and was taken out the work force with a MELD of 18 when I applied for disability. I was very sick and dont even remember going to the office to apply. My family drove me there. My wife said all the woman behind the desk could say was "Oh my God, Oh my God" and quickly filled out the papers. That was 1 month after my diagnosis with two months left to live.


Ziff
Posted 4/28/2014 12:19 AM (GMT 0)
I was still working at 18, then went into the hospital with edema in my legs and feet. I had 28 pounds of fluid in them. Got out after a week, had lost the 28 pounds and my score had zoomed up to 24. Got my transplant 3 days later. The last day working I was tiling a tub platform while lying on my side.
Posted 4/28/2014 5:44 AM (GMT 0)
do you think as i am hepc SVR its possible i can avoid needing a transplant with that low meld?until today i dont even ever been diagnosed with cirrhosis.
iam just so scared of this all.
Posted 4/28/2014 2:10 PM (GMT 0)
Hi, I wanted to link your thread from April 9th, but was unable to do that.

Your biopsy showed fibrosis, as I recall. It looks like you obtained SVR , no cirrhosis, which is great! You said you have seen multiple Hepa's at more than one transplant center. They checked you out and tell you there is nothing wrong that is liver related. Your MELD score is within normal range. You had not verices, no acities, no portal hypertension. You are SVR since 2012. You said you had nausea and fluctuating bili numbers, which the doctors are aware of.

You said you have depression. I know treating Hep C multiple times can be frightening and challenging. Even so, your heath issues, per your several doctors, are not liver related.

Have you checked into a new physician for the depression as was suggested? Perhaps, a change of medications for the depression would help?

Because of what you have said, and what your doctors at transplant centers have told you...I really think this is something not related to your liver. Big Hugs,
Posted 4/28/2014 2:55 PM (GMT 0)
Yes my biopsy showed F3 fibrosis, but this was back in 2009,and I am SVR since
15 months now.
My meld score is between 6-9 depending on my bilirubin.
I just don't get it what makes me feel so sick and depressed.
Gilbert syndrome was tested and negative.
But I have stomach pain nausea,muscle twitches, joint pain.
as far as I know all symptoms that are or can be as one is having
advanced liver disease.
but as you said mri,us and fibroscan are all normal.although the
fibroscan indicates severe fibrosis, but no cirrhosis.
Posted 4/28/2014 4:20 PM (GMT 0)
hey xxer, you have treated 3 times. thats a lot of interferon and ribavirin. then add 3 months of incivek. incivek has worse sides than interferon. it was black boxed for intolerable sides. but you did it!!! and you are svr. congratulations!!!! you are one tough hombre!!

no doubt you still feel fried. i did the same as you, and i understand. but your sx of gi problems, joint pain, muscle twitches, are not sxs of esld.
this is not a dx, but you seem to have some extrahepatic manifestations from a long fight against hep c. intreferon/riba can cause post tx sides for an indefinite amount of time.
also interferon can lead to auto immune issues in a small # of patients.
barry
extrahepatic manifestations are sx away from the liver, but still liver related
Posted 4/28/2014 4:22 PM (GMT 0)
Those symptoms can be a lot of things other than liver, xxer. Since you checked out the liver and the doctors ruled that out, it was time to look elsewhere. You have obtained SVR in time. A good thing!

All of the things you mention can be related to your depression. I would look at that, if it were me. You keep repeating the same info and wanting different answers, but you already have the answer from testing and multiple medical professionals. Time to take that to heart, and look at things than liver disease.
Good luck and take care...
Posted 4/30/2014 4:51 PM (GMT 0)
My dad had a MELD of 18 when he went in to the hospital which is when he just never went back to work. Being 62 he knew an early retirement was inevitable, especially since his work was repairing large commercial manufacturing machines. Pretty hard work.

He hadn't attempted to go on disability until recently when reality sunk in the he can no longer work as he is always tired with on and off again bouts of pain.

Sadly, getting on disability has proven difficult for him which is insane to me. Regardless it appears his disability would only get him an extra $200/month from his current retirement amount. He worked for 46 years and now that he is in need it doesn't seem to add up....

Maybe we are doing something wrong.

In any case, his goal is to one day be able to get back to work. Obviously that will take a miracle and lots of work but at least he has something to strive for.
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