End Stage Liver Disease diagnosis

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Grandpa1
New Member


Date Joined May 2009
Total Posts : 8
   Posted 12/29/2009 1:03 PM (GMT -7)   
I am 3 years now from diagnosis End Stage Liver Disease.  My MELD score has dropped considerable but still is 10 or so.
I have gained a considerable abount of weight and as an amputee, I am wheel chair bound.  Since the very first day home from the
hospital in 2006, I have been sore in my shoulders and leg.  Now for the past year and half, I stay sore all over my body. The fluid
must be there somewhere.  Paracentesis in August showed not enough fluid to  drain.  For the first 1.5 years, I had a paracentesis every 4-6 weeks
with 5-10 liters drained each time.  I don't understand what happened, but I have a pocket of fat, celulite or something in lower abdomen.
I think the sitting so much has damaged my tailbone.  It is horrible standing up to get in bed after sitting for any lenth of time.
Anyone having similar problems


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/29/2009 4:23 PM (GMT -7)   

Grandpa, I believe that some of your problems could be from sitting so much.  Do you have a prosthesis?  If you do and it is uncomfortable, perhaps you could get it revised.  If not, could you get around some with crutches?  Sitting for extended periods of time will give you problems with circulation, decubitus ulcers, weight gain, and other woes.  I don't believe that we have any other amputee posters here, but I have artificial hips and have had 3 revisions.  I sit more than I should, and am very stiff when I get up after sitting for long periods.  I can only encourage you to move around as much as possible.

Hugs,

Connie


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


Grandpa1
New Member


Date Joined May 2009
Total Posts : 8
   Posted 12/30/2009 7:41 AM (GMT -7)   
Thanks Rick and Connie,
I wore a prosthesis for 50 years and for the most part did extremely well.  I only had to stop due to swelling. Also, a huge pocket of fluid, celluite, or fat cells, not sure...
developed in my lower abdomen.  It now is so large that would make wearing a prosthesis very difficult. It's hard to maintain any consistency in my stump size to
keep a leg on.  I do go swimming two days a week. I took therapy when doing leg wraps on my good leg to reduce edema swelling.  I also, did 10 weeks of therapy for exercise with isometrics and in pool.  I continue that two days a week and use the isometric expanding band.  My entire body stays very sore and tender. I'm not quite sure why but is is painful. I exercise as best I can anyway and my goal for this coming year is to establish a diabetic diet, even though I am not diabetic.  Counselor indicated this a good way to go to lose. I have to admit it seems like
a losing battle, but remain hopeful.   I have been able to go to church one time a week and teach Sunday School. I also ride a golf cart to my doctor up the block on occasion.
Thanks for the encouragement and response.  Take Care.
 
The sparrow still singsl...in the rain.
"The Sparrow Still Sings in the Rain..."


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/30/2009 12:20 PM (GMT -7)   

Grandpa, are you taking duretics and watching your salt intake?  This might help with fluid retention.

It's good that you are getting some form of exercise.  With the overall soreness that you describe, it's possible that you could have fibromyalgia.  You might want to consult with a rheumatologist.

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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