Hello. I found out I have cirrhosis recently.

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kemar23
New Member


Date Joined Jan 2010
Total Posts : 9
   Posted 1/25/2010 7:59 PM (GMT -7)   
I have read many of the postings and references this past month.

I am a 53 year old female, employed, and have a wonderful support system. December 18, 2009 a doctor told me I had cirrhosis stage IV. I had an initial meeting with a hematologist. He is reviewing my test results and will try to determine the cause. However, he also stated this may not be possible, as Primary Biliary looks like alcoholic cirrhosis at this stage.

I have done the basics, stopping all alcohol consumption, limiting sodium, eating healthy and taking medications prescribed.

I am on a short term medical leave and I am having a difficult time understanding how I will return to my full time job.

Any suggestions?

kemar

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/25/2010 8:40 PM (GMT -7)   

Hi, Kemar, and welcome to the forum!  You will find a lot of information and support here. 

Have you seen a hepatologist (liver specialist) yet?  I would recommend it, as anyone with chronic liver disease should be under the care of one.  What led to your diagnosis?  Were you having symptoms?  Are you feeling fatigued and dragged out?  Did you have a biopsy?  I suspect you have had one.

You are doing the right things thus far.  The fact is, you may not be able to return to full time work.  I was diagnosed with hep C in '93, though I'd been having fatigue since '91, and never again worked full time after that.  Until I received SSD in '05, I worked P/T, with decreasing hours each year.  I also have cirrhosis, though a stage has never been mentioned.

Are you continuing to be covered under your medical insurance while you are on medical leave?  If so, get as much done as you possibly can while you have insurance. 

As you may know, there is no cure for cirrhosis, but there are things we can do to slow down the disease--which you now appear to be doing.

If you haven't read the folder, Hepatitis Resources, at the top of the page, you might want to do so.  There's a lot of information in there.

If you have any questions, just ask away and someone should be able to help you.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


kemar23
New Member


Date Joined Jan 2010
Total Posts : 9
   Posted 1/25/2010 9:19 PM (GMT -7)   
Connie,

Yes, I meant hepatologist. Lots of new words to expand my vocabulary.

I have been chronically fatigued since 2007. In June of 2008, I started trying to figure out why. My liver enzymes came back high, but I had no clue about the significance. My quest was complicated because I work for Chrysler. Lots of drama there. Anyway I also started having other symptoms. I could feel my organ (liver) pulsating. The pain would wake me. My sleep is still very erratic and interrupted. I also had/have night sweats, general intestinal discomfort, strange bumps on my forehead, my abdomen became distended and my ankles started swelling. The hardest part was the past year; I became confused at work and while driving home a few times. I also had a very difficult time adjusting to a new position last year.

I have had lots of tests, including a biopsy. My current MELD score is 8. I am covered under a short term disability plan, which will morph into long term/permanent if I am approved. I don't know the likelihood of being approved. So, I am trying to understand my short term and longer term future.

I am very interested in hearing from people who have been through this process. I really appreciate this forum and look forward to hearing back from you and anyone who might have suggestions.

Thanks,

Kim

Post Edited (kemar23) : 1/25/2010 9:22:17 PM (GMT-7)


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/25/2010 9:28 PM (GMT -7)   
Hello Kemar and a BIG WELCOME. Sorry that you have been diagnosed with this disease. But it sounds like you are making the right steps to combat it.

If in fact you can not work full time any longer........check into some sort of long term disability before your sort term disability runs out. Ask your doctors about it. They should be able to lead you into the right direction in regards to it.

You mentioned that you have a great support system......that's great. The more the better. With this disease as with any other, patients and their caregivers need to be very proactive with their healthcare.......Take notes at doctors appointments and ask lots of questions.


Take care.......thoughts and prayers.........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/25/2010 10:03 PM (GMT -7)   

Kemar, are you going through menopause?  I'm thinking that might be the cause of your nigh sweats.  I never did have hot flashes, but did have night sweats until I went on hormones (was immediately taken off them when I developed liver cancer.)

Are you on diuretics for the edema?  What about Lactulose for the confusion?  High ammonia levels can go to the brain and cause those symptoms.

If you have not purchased long term disability insurance, you may not be able to get it now since you have a pre-existing condition.  However, you might want to ask your hepatologist if he thinks you should apply for Social Security Disability now.  You might be able to stabilize your illness, but it's not likely to get much better.  It takes time to be approved for SSD and you don't want to be stuck at some point with no income.  It took me 2 yrs. to be approved for SSD, and it was basically for a different medical problem.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


logan15
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/26/2010 11:11 AM (GMT -7)   
Kemar, you seem to be a little timid in your first post. Do you believe your symptoms are due the excessive use of alcohol?

Your friend in this struggle
Logan 15
Diagnosed cirrhosis August 2005
Diagnosed diabetes type 2 May 2009
Received Liver transplant July 16 2009


kemar23
New Member


Date Joined Jan 2010
Total Posts : 9
   Posted 1/26/2010 11:37 AM (GMT -7)   
Pink Grandma and Connie,

Thanks for the suggestions on disability. I am taking Lactulose. I bought Long Term Disability when I started working 10 years ago. I looked at the requirements for SSDI and it seemed like I need to be at end stage liver disease to qualify. I have been post menopausal for over 2 years now.

Watching my sodium, stopping alcohol had a positive effect within weeks. So I am not taking any diuretics. I am taking Xifaxan and Ursodiol. All of this, plus the rest has me feeling better. I rest a lot, sleep 12 - 14 hours per day. I need to continue to improve my diet and to start exercising.

I am not sure I really have wrapped my mind around all of this and it feels strange to hear that I am disabled.

I will start the process for SSDI and am very grateful for your guidance.

Thank you,

Kim

kemar23
New Member


Date Joined Jan 2010
Total Posts : 9
   Posted 1/26/2010 11:48 AM (GMT -7)   
Logan 15,

Yes, it could be alcohol related, but the first diagnosis came back as Primary Biliary Cirrhosis. I do have a family history of pancreatic and stomach cancer. My maternal Aunt and Mom respectively. I was able to stop drinking (4 glasses of white wine per night since 2002) completely and immediately upon diagnose without any cravings or other issues.

I see the heptologist again on March 5, 2010. At which point he will have analyzed my medical records and give his 'professional opinion' on the subject.

Thank you,

Kim

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/26/2010 12:11 PM (GMT -7)   

Kemar, if you have Long Term Disability, there may be no need to apply for SSD just yet.  Read your policy closely, though, looking for any fine print.

With the changes you have made, it's possible you will be able to return to work for a period of time.  Your body will let you know.

One thing you should be aware of (and probably are, if you've read many of the posts here) is that if you are referred for a transplant down the road, it's possible that they may require 6 mos. of AA meetings or alcohol counseling.  Though you seemed to be a moderate drinker in the past, they would want to give a new liver every possible chance.  The more time that elapses between your last drink and the time when you may need a transplant, the less of an issue this becomes.  I was already in AA and had been sober 7 yrs. at the time of my hep C diagnosis, so it was never an issue.  Also, the hep C was caused by drug abuse in the 60s and I had been free from hard drugs at the time of diagnosis for 25 yrs., and free from recreational drugs for 7 yrs.

Continue to take care of yourself and to become educated on liver disease.  Those are the best things that you can do for yourself.  I'm also glad to hear that you have a good support system.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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