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Comensated or decompensated

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Posted 5/17/2013 6:10 PM (GMT 0)
Does anyone know how to determine if my cirrhosis is compensated or decompensated? I think it is decompensated due to the symptoms I have and my enzyme results. But I could be wrong. I don't see doc for 2 more weeks, I just want to have a better idea of what I am facing here.
Posted 5/17/2013 7:18 PM (GMT 0)
My late husband was decompensated and the HE (confusion) was really a problem. There is no way he could have written and kept track of the info that you wrote in your posts. You sound like you are doing pretty well and thinking clearly, compared to what I have seen.

Of course, I'm not a Dr., just a caretaker and only have experience with one ill person. For what it's worth.
Angie1953
Posted 5/17/2013 7:35 PM (GMT 0)
           hey DD,    there is the staging method i cant remember without googling.  i think pugh scale is part of the name.  oh well!  someone will chime in with that info. but the characteristics of a  compensated liver is one that still functions well enough to keep you healthy.  decompensation is characterised by ascities, HE, edema, etc etc.  the architecture of the organ will change and you will likely need a liver transplant. 

            regardless of how your staged, you have more options now with the new drugs coming soon.  todays tx are not for esld, but the new drug trials are including esld. i sent you the email of the trial contact for cirrhosis and esld. 

            you will also have a forum behind you that has, with out a doubt, yhe most experience in esld and beyond. 

                             barry

Posted 5/17/2013 7:57 PM (GMT 0)
Hi DD

You would have to be pretty sick and only a doc could say if you are fully decompensated.

A good indication of how sick you are would be to calculate your MELD score
http://www.mayoclinic.org/meld/mayomodel6.html]ww.mayoclinic.org/meld/mayomodel6.html

Check your own records for

INR
Bilirubin
Creatinine

You are pretty sick if over 22. In the 30s is bad

Most TP centers transplant between these numbers depending on supply vs demand

And the overall health of the patient. Those with other problems may not qualify for "the list."

There are many good programs in your state

You will need him to have insurance or qualify for Medicaid

Hospitals often help liver patients with some charity help.

When Mike was fully decompensated he had:

Brown urine
Pasty or floating bowel movements
Lots of gagging but infrequent vomiting
Horrible edema from toes up past knees
Poor appetite.
Hated anything spicy or with any flavor or smell
Slept most of the time
Bad HE--nutty as a fruitcake, often angry or unreasonable
Unable to organize med regime
Leg cramps so bad he'd fall down
Sleepless at night
Cancer hair
Jaundiced
Bleeding in bowel -- very low platelets
Behavior too erratic to drive

Frequent hospitalizations for
HE
Sepsis
Acute kidney failure
Hyponeutremia-- low salt
Pancreatitis

He is doing fine now by the way, 2 years post transplant. He still has Hep C, but his MELD is less than 10...thank to a lot of prayer and a lot of help from the medical folks at Jackson!

Best
MamaLama

Post Edited By Moderator (hep93) : 5/17/2013 4:11:55 PM (GMT-6)

Posted 5/17/2013 9:27 PM (GMT 0)
Hi dd,
Wait until you see your doc in 2 weeks. Self diagnosing is a waste of time and energy.
Posted 5/17/2013 9:58 PM (GMT 0)
Agree with David. Take a deep breath.
I know how freaked you certainly must be. Hang in there. It does not hurt to get your directives in order...those pesky things everyone should have, but often do not. Do your Durable Power of Attny for Health Care, General POA, and Living Will. See a lawyer for state specific needs. Every time we wind up at the hospital, they ask.

Hugs. themiz
Posted 5/17/2013 10:07 PM (GMT 0)
I never did decompensate, but had a transplant due to liver cancer. Without it, I would have died. I was told recently by my Transplant Coordinator that I compensate well. HCC is still causing lots of problems..

I think Carol gave you a good rundown of decompensation symptoms. I doubt that you are decompensated, but let your doctor validate that for you. Your best bet is to get treated for hep C.

Hugs,
Connie
Posted 5/17/2013 10:51 PM (GMT 0)
Child pugh scale gives letter score of how bad cirrhosis is. it gives a, b or c. It does not necessarily tell if you are decompensated.
Posted 5/18/2013 1:55 AM (GMT 0)
Thanks for all the info. Yes, self-diagnosing is probably a bad idea. It is just that dread of the unknown that makes people crazy I guess. A lot of websites do have good info, but they do make it sound like if you are experiencing any of the symptoms you are decomp ESLD. Now I see that isn't how it really works.

I have mild ascites, no jaundice, no loss of appetite or weight loss, extremely annoying itching, bleeding a lot from the tiniest scratch, very dark urine no matter how much water I take, and fatigue. I can sleep 8-10 hours and a few hours later I can't keep my eyes open. Depression and mental confusion are definitely occurring but not severe. I am a tax accountant so HE is going to be a huge issue if that worsens.

I had the flu last year 2 weeks before Christmas. I was practically unconscious for the first 4-5 days. I had a trip booked to Denver the week before Christmas to see my kids. I managed to go on the trip but by the time I got home I was in terrible shape and was unable to get out of bed for the next couple weeks. I finally went in and got a z-pack but I just never seemed to recover after that. I seemed to fall into a deep hole of depression and exhaustion and couldn't pull myself out. Now I wonder if that virus triggered the HCV to speed up and start doing more extensive damage. Could be coincidence, but I sure went downhill fast.

Another thing that is happening is as soon as I eat anything it sounds like an alley cat fight has broke out in my upper right abdomen. I can actually feel stuff moving around in there and the noise is ferocious. Is that my liver carrying on like that, or possibly the gallbladder?

Sorry I am so chatty, I appreciate those who take time to help. Thanks!
Posted 5/18/2013 4:12 AM (GMT 0)
Doni, the fatigue is from the hep C. Having the flu and traveling caused more caused more fatigue. You have to learn to pace yourself.

I can't say what your digestive concerns are about. Somewhere along the way, you should have an abdominal ultrasound which will reveal liver, spleen, gall bladder problems. Meanwhile, stay away from greasy food (I believe you said you have fatty liver disease, too), and anyone with liver disease should not eat red meat. This includes beef, lamb, and wild game. You can eat turkey, chicken, fish and shellfish...healthier anyway. Drinks lots of pure water. Increase fruits and veggies. And, of course, no alcohol.

Hugs,
Connie
Posted 5/18/2013 4:51 AM (GMT 0)
Connie, I did have abdominal US, which revealed mild ascites, fatty liver, and fairly large gallstones. The CT showed cirrhosis and enlarged spleen. Hematologist said that platelets are being backed up in spleen that is why my count is low. I was supposed to have the gallbladder out when I have hernia repair but that got canceled due to the cirrhosis diagnoses.

That idea just finally occurred to me tonight about the fatigue. I keep waiting for it to go away, like something is supposed to happen to change all this. I need to learn to accept that it is how it is. sigh...
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