58 year old man - cirrhossis and edema with enlarged spleen, sludged gallbladder and chf

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Grandpa1
New Member


Date Joined May 2009
Total Posts : 8
   Posted 12/18/2009 12:56 PM (GMT -7)   
I was diagnosed 3 and 1/2 years ago with cirrhossis.  In December of 2006 I had to go to the emergency room with bleeding that would not stop.
I was diagnosed at that time with ESLD and told that I probably would not be around long enough to get on the transplant list.  I have been going to
UNC Chapel Hill transplant center for 3 years and currently on the list. I have been placed inactive due to high BMI. I am an amputee and cannot wear my prosthesis
due to swelling. I am bound to a wheelchair and spend much of my time in bed due to back pain from sitting so long over 3 years.  My meld score has decreased since initial
assessment but still 12.  I take the lactulose and dieuretics although I am unable to take enough to do all the job due to Kidney damage. For the first year, I had a paracentesis
every 4 weeks or so and drained 5-7 liters each time Once it was 12 and another 10 liters. It has been a long time since going for another drain as they indicated not enough
ascites to drain.  I am larger than ever and suffer from a tremendous pocket of fluid and celluite in my lower abdomen. It reaps havoc on the scrotal area and is very heavy.  Many times it gets extremenly hard. Doctors indicate nothing can be done due to my condition with low platlettes etc.  I have tremendous pain in my shoulders knee and hip.  I get cordison shots, 2 in one arm
to help with the pain. I have little strength left in my arms but they continue, as my abdomen, to increase tremendously in size.  My doctors say I will not get better without a transplant.
I have little hope of getting my weight down as a sedentary lifestlye and immobility has pretty much overtaken me.  Seems like I just carry on. Some days better than others but
most are a challenge.  I have not had anything to drink for three years, but was a heavy participant for over 25 years. I am very lucky to have good doctors, good family, and a great church
to support me at this time. As I am unable to work financial planning is a must and, although we make it, it is a tough time far earlier than I had hoped in my career.
My lack of focus and fatigue keeps me from doing much online, but I do write and teach a Bible study weekly. It takes all I have to get there and to prepare, but it is well worth it.
I guess I say all this to be honest with those who are diagnosed. Yes, it is a hard road but I have a 3 year old grandson I have been able to see and love. I have three wonderful children
all of whom are now out on their own. I have a wonderful wife who has cared for me and continues to do so. I don't say I deserve it , but Grace is an extension of those whose
life is in order and accept the Grace of our God. I have always been a believer and shamefully admit my failures, but forgiveness is there waiting.  Forgiving ourselfves is the hardest of
all things.
 
To all who read, please grant yourself a moment each day for quiet time and a simple time of prayer.
A Time for Quiet
I have a blog at ATQ@blogger.com if you are looking for help with that time.
God bless to all who are ill and the caretakers who are so caring.
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/18/2009 3:43 PM (GMT -7)   

Grandpa, hello, and welcome to the forum.  I am sorry that you find yourself in such a poor state of health, with not much hope of improvement.  I believe Rick (timeless) goes to UNC Chapel Hill, or maybe it's Charlotte.  With your multitude of health problems, I don't suppose a TIPS procedure would be considered.  Are you watching your salt and fluid intake?  I do want to congratulate you on your 3 years of sobriety!  That is the single best thing you could do for yourself and your family.  It sounds like you have a determined and loving spirit, as well as a personal relationship with God, so I know that helps you a lot. 

I do want to caution you about cortisone shots, or any steroid.  They are the #1 cause of osteonecrosis, which is a bone disease in which the bone in large joints literally dies and disintegrates.  I have artificial hips due to this, though they believe mine was caused by alcohol abuse (now sober 23 yrs.)  Since you also have a history of alcohol abuse, that already puts you at risk for osteonecrosis.  Steroids can also cause tiny stress fractures in the spine.  This could actually be the source of your back pain.  You might want to get x-rays of your spine,  shoulders, knee, and hip, to determine if you have bone damage from the cortisone.  What you are getting for pain may actually be causing more pain due to the potential for bone damage.

I know you will get a lot of support here.  You also can help others going through the same thing, if you feel up to it.  That is how this forum works, through give and take.  We're happy to have you aboard!

Hugs,

Connie



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


Imjustpeachy
Regular Member


Date Joined Oct 2009
Total Posts : 21
   Posted 12/18/2009 6:06 PM (GMT -7)   
Welcome Grandpa.  For some the glass is half empty and others (like you) it is half full.  You have a tough row to hoe but it sounds like you aren't going to let it stop you from enjoying the things you do have.   I will read your blog when I get a few minutes.  Cheryl
 
I

Grandpa1
New Member


Date Joined May 2009
Total Posts : 8
   Posted 12/18/2009 6:58 PM (GMT -7)   
Thanks to Connie and Cheryl for kind responses to my offering.  It is truly nice to make new friends and to gain
experience. Hopefully, I can provide some to others as well.
 
 

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 12/19/2009 12:33 PM (GMT -7)   
You guys are my heroes... my beacons in this murky water.... as Mike prepares to go for treatment at the U of Minnesota.... for liver cancer and then transplant evaluation... u r inspiring... as he has now pulled his head out of his backside... and is sober by his choice... and fighting mad to live... ok.. now we have liftoff and a chance... we'll do this together with God's help and ur help... thank u.. every bit helps... Merry Christmas to all...
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