[Liver Disease] Questions concerning stage 5

I am at end stage they say, some say stage 5.
I have not given up, but I have given up on the American Medical Association.
Every day it changes. I was on lactulose for high levels of ammonia, I had about 13 operations for bleeding in my throat. and a shunt inserted to bypass my veins or arteries connecting my upper portion (head) of my body.
I was offered a transplant, but for personal reasons I won't ever do that.

I am afraid of dying, but have accepted it.
Still I need to know if I'm lazy and stupid or how much of this is real.

I don't sleep normal anymore. All food makes me at least a little ill like an allergic reaction. I don't have patience to argue anymore... I feel a stabbing pain sometimes through the upper portion of my liver. I am always thirsty, feet swell, blaa-blaa...

I really just want to know a little more about the path I'm on and what to accept or expect.
You will scare me, but I will never tell you that you did. I just need to keep my mind working correctly and the doubts over me wondering if I'm lazy are real. I really would rather be at work every day.

I'm sorry if I came off wrong on this post and I will not read it to edit it because I've been a couple hours looking for these answers (that's how I found this site)

Thank you for any attention in this matter,,,
Dave Rice "Funk"

Post Edited By Moderator (hep93) : 4/22/2012 10:36:26 PM (GMT-6)

Thank you for fixing my spelling mistakes Connie.

I'll try not to get too complicated in answering a few of your questions, but I'm not so good in formatting properly. I'm just going to answer one at a time to not be all over the place with this reply.

I quit lactulose because it wasn't treating me right somehow. I got all the results it promised, but also there was a problem. After taking it I would become starved and I'm really not a big eater. I would get so hungry it actually kind of hurt a little (or annoyed me anyway) and to curb that I would try to get about 1,000 calories into me the easiest way possible, like eating a lot of peanut-butter or ice-cream and I still felt starved, but now I'd also feel sick and starved. Quitting it after taking it for so many moths was hard too because it caused cramping for about 6 weeks.

I have Hep C. I found out in Omaha while being in the ICU that they did a gene gnome "<--- spelling???" testing and the results of it were that I had the genetic form of it and was born with it.
That doesn't mean that I was without guilt. I had my 20-plus year run with drugs and got really good at it [blaa-blaa...] When I was diagnosed with hep-c I was told it was from my own stupidity only and I understood that as I deserved what I got then. After finding out I had instead the genetic version though everything changed and they started trying to force me into the transplant program. I wanted the drug therapy, they wanted the big mone play it hard program. I lost and they did too. More on that next...

I'm sorry to admit it but I would rather die than get a transplant and have three major reasons for feeling that way..
My father died slow when I was about 8 from a heart infection. His prolongation of life and his nonacceptance of his condition gave him nothing but added suffering and deeper failure. Number 2, My mother died very slowly fighting cancer. She lived (?) 5 years with Oat Cell Cancer and there were only 2 other patients (<-- spelling?) ever diagnosed with that cancer while still living in the Dayna Farber Cancer Center in Boston because it kills so quickly that in twelve weeks you usually die. In the end she suffered 5 long sorry years and watched everything she had go to hell. Those two reasons are why I don't want to bring my family into an obviously stupid round of meaningless efforts and false hopes. My third reason I am hesitant at saying because I am not trying to represent Gods views and some might assume that I am, but God gave me this body and it has served me well. I have 7 children and three grandsons all made in part from this body. When this body fails it's not up to me to go trying to try to steal more out of it with rigged up body parts given to others. I will not insult Gods work that way. The stupid things I have already done are enough.

The things I worry about the most are as follows...

Every time I eat anything I at least don't feel good because I ate and more often I get a high fever like an allergic reaction that usually lasts about an hour with sweats and shivering cold feelings inside. Sometimes I get so sick I feel like I could drop to the floor if I give up trying. (I want to know how real or normal that can be or is)

Next: I can lose all of my energy in almost a minute, but if I lay down and sleep sometimes almost 15 minutes I wake up and feel restored again??

Another thing... I can't handle a whole lot of excitement anymore. If there's too much going on all around me I get edgy when in the past I was the one causing all the commotion.

I think I answered those questions Connie that you asked and thank you for your reply to me, if I could make one more point I would like to say that Yea I am afraid of dying but many people before me have done it from kings to to the greatest of man and Jesus, I'm not afraid of the destination (I hope), but I'm very afraid of the path I'm on.

Blessings to you Conny and smiles,,,
Dave

Thank you Sandia and yes, I think I know God a little and try to trust His intentions over my desires.

Dave , I understand your situation but don't follow your line of reasoning on dealing with it . Have you considered that the outcome will be the same no matter if treated or untreated ? I mean logic would make me consider the medical route . Many people here have been given the death sentence from our doctors initially only to find out at the end of our given time we still survive . Not for weeks or months but years , I am one myself .
My life is not perfect but I am not suffering any longer as I was when diagnosed with E.S.L.D years ago . If I had accepted the 3 month survivability estimate given to me and not sought better treatment , I believe that estimate would have held up . As far as God is concerned in terms of Christianity , His son was a healer . The apostle's had been given power to heal so whats wrong with modern medicine and doctors ?
Ya know , every drug addict and alcoholic ( Me ) I have spoken to that suffers from liver damage gets that type of initial response from doctors . I did also . Yes a little compassion and understanding would be nice , particularly if they are gonna charge you through the nose to make things " Better " . Doctors aren't in the business of saving souls or soothing your wounded heart . They look at numbers and fix what they can when our bodies fall apart . Notice " numbers " I did a post on that recently , You know you are a statistic right ? You have to show them that your not that person who's gonna waste a transplanted organ . That hits the mail ego particularly bad , If you are like most of us , Having to suck up or bite your tongue is akin to death . Proving yourself worthy of proper treatment comes at a price . Yes I have eaten crow and pressed my lips on a few of the medical care industries finest back sides , But it has been worth every humiliating moment . Besides it kinda taste like chicken after awhile ( Butt kissing ) and being this side up the dirt has been fairly nice .


A. Ziffle

You can expect a lingering and painful illness, followed by dying. That straightforward enough?

Can I ask what kind of person would you have to be to go into forums dealing with health issues just to practice insults on people and mockery?

Where does it begin? Do they start out by attacking little sister when she's sick or is it more like hiding grandma's glasses on her and stealing her meds?

I don't see anyone mocking you...rather the other way around. David is so far off from your description, it's laughable. And he certainly did give you a truthful answer to your question. BTW, he has had a transplant.

Perhaps you really do need to be taking Lactulose, as your thinking right now does not seem very clear to me. People come here because they are scared and seeking information. Others are here to share their own experiences. I'm not quite sure why you are here, as you seem to have drawn a line in the sand from which you won't be moved. All we can do is offer information and suggestions. What you do with that is entirely up to you.

Hugs,
Connie

Your cousin is a fine lookin" woman. Squeal all you want but please use a condom.

Sorry, I couldn't help it.

I was born in North Carolina (1950) and have lived in Massachusetts since 1971. No pickup, trailer, or wife (pregnant or otherwise). You asked a question and I answered it. I could have put more detail into it, but that's what you're looking at, should you decide to not help yourself and try to live. We see plenty of people here that have decided to commit slow suicide. I don't get that. I fought for my life. Having gone through a decade+ of ESLD, a cerebral hemorrhage and eventually a liver transplant, I know it's hard work. To me, giving up is just laziness. If I ever get to a point where it's time to give up, I'd prefer to pick my time, not waste away. I'm not afraid of death, having almost died 3 times.

It reminds me of an old joke: "I'd like to die like my grandfather. He passed away in his sleep. Of course the other passengers in the car weren't happy about it."

One final comment, regarding your comment about my sister. My sister died of ovarian cancer almost 11 years ago. I helped care for her. She spent 4 years fighting the disease, so I suppose a will to live is what we do in my family. She meant everything to me.

No HVC, I test every year for it just because Hep93

David... I hope you don't leave this quickly... I understand where you are coming from... you have spiritual beliefs against a transplant.... and you want to know what will happen.... I don't know if you looked but there is information in the resource section that can help you... reading older posts can help also...while I don't agree with your decision however you came by it... I respect your right to make it... being pro-life.. I fought to help Mike live... and would fight tooth and nail for my own life... however... read through the above items...
as for this group of people... no one here claims to be a professional... these people... are here for support.... through the tough times... and sometimes it takes tough words... for reality to set in... each one of these people have put hours into supporting and helping people through this journey... some use wit and humor to make their points... it may seem over the top... but these are people who cherish their lives... given second chances who give of themselves selfishly... even if it is to try in some way to help you in a way you are not used to with tough words... these are loving caring people... with big mouths sometimes... but time is of the essence... and your life is on the line... no time to dress pretty for the party... I love each and every one of these big mouth people for when my Mike lay dying... and I slipped into the family room to the computer crying two years ago yesterday to announce he had died... it was these people who picked me up... and put me back on my feet... and it was these people who gave me strong words when I needed them... it's cuz they care... ur judgements are wrong... I wish you well and pray for you this nite.. Sandia