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ESLD_stinks
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 10/25/2008 2:46 PM (GMT -7)   
My 55yr old father is suffering from ESLD. He has Hep C, and is a five year transplant survivor. He was Dxed nearly 8yrs ago when he landed in the ICU with esophogeal varicies, and nearly died then. That was when he learned that he had contracted Hep C in his early 20s. It had been dormant for most of his life, until about 10yrs prior to the ICU stint, he had started drinking heavily. He quit drinking and received a transplant about 3yrs later. He's been relatively healthy, up until about a year ago. Then he started going downhill. He's been on the brink of death I cannot even count how many times. In Feb of this year, he was in kidney failure that he suddenly came out of.

He's currently in hospice care, and recently just moved into a hospice facility. He has sores all over his body, he itches insanely, his encephalopothy is getting worse, he's dwindled down to nothing but skin and bones, and he's currently retaining water on his forearms, feet, and face, and hands. The face is the newest symptoms, and his eyes have all but swollen shut. I know that ESLD patients progress differently, and therefore nobody can tell us how much longer. His Liver enzymes are above 3000 and his Viral load is about 8mill. I guess I'm looking for stories from others that are going through this, or have gone through this, and what to expect.

Thank you

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/25/2008 6:00 PM (GMT -7)   
Hello ESLD_Stinks and welcome to HealingWell. I am so sorry about your father. Your screen name says it all.........it does stink!

If you get a chance please read over some of our older posts......there are all kinds of stories good and bad.

I'm not sure where you are from but here in California..........Hospice doesn't usually get involved until the life expectancy is 6 months or less.

Once I involved Hospice for my husband's care......he lasted only 3 weeks. But I have heard of ESLD patients in Hospice's care for over a year. So everyone is different.......doctors can give an educated guess work but it is actually in God's hands as to how long and what's next.

Have you talked to his doctors? Be firm with him/her that you need and want to know. Be direct and to the point so that they can not beat around the bush.

Again welcome.........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 10/25/2008 9:11 PM (GMT -7)   

Welcome, ESLD_stinks.  Sorry you are having to see your father so sick and declining.  When he first started to get sick again, was a possible 2nd transplant mentioned?  I'm sure he is not well enough for that now.  After his transplant, did he receive treatment for hep C?  It sounds as though the hep C has destroyed the "new" liver.

You will find a lot of information and support here.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


ESLD_stinks
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 10/26/2008 6:01 AM (GMT -7)   
Hep, Thank you. No we never discussed a second transplant. He was in FL at the time, and I am in VA, so I don't know if his doctor mentioned it. I believe we were all of the opinion that he had gotten more time, and it was selfish to take away someone else's chance at more time. He's gotten five years he never would have had otherwise. He did not receive treatment for hep c after the transplant. Unfortunately he left CA, where he had moved back to in order to receive the transplant, back to FL. If he had stayed in CA and continued going to UCLA for treatment and care, I think he would have fared better. But having moved back to Key West where they were ill equipped to deal with such an illness and his continuing care, I think that he did a lot of damage. His dr in Key West believed that treating the Hep C would damage his liver. I knew this would happen, and it's fallen fairly well on the time line. Evidently transplant recipients who do not treat the Hep C after the transplant, generally have about 5 yrs. The 5yr anniversary is Dec 26.

ESLD_stinks
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 10/26/2008 6:10 AM (GMT -7)   
Grandma, thank you for your post. Hospice is the same here in VA, but you can extend it in 6mos increments. He was originally assigned a hospice nurse back in July or Aug. We moved him into the hospice facility this past thursday. His disease has been anything but typical, so I think the doctors just have NO clue what to expect from his body. In reading through the stages that are posted on here, I'd say he's between 2 and 3. It has progressed rapidly over the past year and a half. We were in FL to visit him last june, and he went into kidney failure (which he somehow came out of, not sure if he accidentally ingested some kind of toxin that his body had to recover from) in Feb. He came here in April/May, left for a month, and came back in July and has RAPIDLY gone down hill. If he makes it another six months, I will be beyond shocked. Stranger things have happened, but he's not doing well at all. They do have him on a morphine pump to alleviate some of the pain. They have him on Benadryl injections for the intense itching. He's still taking his Prograf, but medicaid has denied his recent refill. He really shouldn't be on it anymore, his liver isn't functioning and taking it can be toxic, but he's got it in his head that he's going to die if he doesn't take it. I don't know how to tell him he's going to die anyway, and taking it may be harmful. It's taken me less time to wrap my mind around the fact that we've lost the battle, than his has. While at times he makes references to the end of the ride, I really think he's struggling with this more than he admits.

THanks for listening. There is so much to his and my story, it's nice to have folks who at least know what we're going through on the medical side of it. Wonder if there are any "My father was a lousy father, but now I'm losing him and i don't know how to deal with it" forum?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/26/2008 1:45 PM (GMT -7)   

ESLD, I agree that your father probably should have stayed in CA for the hep C treatment, but what's done is done.  It sounds like he is getting excellent care now.

I can relate to you about the lousy father thing...and I didn't handle it well at all when mine died.  E-mail me if you'd like to unload. 


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


writeleft
New Member


Date Joined Sep 2008
Total Posts : 14
   Posted 10/26/2008 4:17 PM (GMT -7)   

Oh, how sorry we all are for your painful situation with your father. 

I came here recently myself, seeking support for a friend in ESLD, and what a warm and welcoming group I found here. You have found the true experts, as I did.  Thank you board.

Prayers to you and your husband.


 
until next time,
     writeleft

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