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Alcohol Induced Cirrhosis or Hep C Cirrhosis vis a vis transplant

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Posted 2/20/2013 3:12 PM (GMT 0)
I was just thinking that I wish my brother had alcohol induced cirrhosis instead of Hep, then maybe his new liver would last a whole lot longer due to no re-infection. I can't believe it just dawned on me. Prior to transplant, I was reading how some folks with liver transplants are 10 years out feeling good. So I held onto those stories without thinking it through.

Of course those success stories were folks who did NOT have Hep c.

Now I'm bummed out.
Posted 2/20/2013 3:27 PM (GMT 0)
With the new treatments out there though, it does not mean that they will not be able to clear it.

Either way, look at the positive. He is alive and seems to be feeling pretty good.
Posted 2/20/2013 3:40 PM (GMT 0)
I wonder though, is that a positive? Did he stay alive only to have to go through this all again in a couple of years?

I can't imagine how anyone can make it through ESLD, even though I witnessed it, but to have to go through it twice? That I can't fathom and it just knocked me down today when it hit me.

I guess I just have to face facts. New treatments, if they ever become available, have no guarantees (I know, there are no guarantees in life) and I wonder if they will be just as horrible to take as the triple cocktail and then not even that effective.
Posted 2/20/2013 4:22 PM (GMT 0)
 Mae , I can't speak for the transplanted people but having the TIPS pretty much ensures I will have to go through this ordeal again eventually until I get a transplant . For me it's always in the back of my mind ( The what if ) scenario , It doesn't consume my every thought though . When you come to grips with what's potentially ahead of you , You tend to make that worry diminish . Ignoring the possibility of dying or suffering only makes things worse and second guessing a life altering decision that has already been made is useless .

 I know for me until I got diagnosed the possibility of death was  thought about but not in the sense it is today . Not just Liver patients but Cancer and so on that have been deemed terminal that I've spoken to say the same thing . It's really hard to fully appreciate life until your faced with a inevitable feeling of death . You can read these words time after time but not fully comprehend what I'm saying until you been there . It's like me giving my condolences to Angie but I cant imagine the hell it is to lose someone that close . It doesn't mean I don't sincerely care or haven't tried to put myself in those shoes , It's really just inconceivable till you been there . Just my 2-1/4 cents worth .

Ziff

 

Posted 2/20/2013 4:59 PM (GMT 0)
I think I understand Ziff, I guess I was blindsided by that epiphany this morning.

It totally sux that ANYONE has to go through the horrific manifestations of this disease and it makes me depressed thinking about the future and thinking about all the people here I read about, a mere fraction of the ESLD populace, who are or could be facing such a bleak future.

The mere thought of my brother going through it again is too hard to bear. Not to mention that I myself don't think I could either. I know, selfish.

But like you said, in your infinite wisdom Ziff, you couldn't know know until you've been there yourself.

Because I've been trolling the board a bit too much lately, it forced me to do a lot of thinking, and that's not good sometimes I guess. I don't even discuss it with my brother because I think he has those rose-colored glasses on, and maybe that's a good thing.

Thanks Ziff

Hugs
Posted 2/20/2013 5:29 PM (GMT 0)
Let him live his life in the now, keep the rose colored glasses on and be happy now when he can. He is going to keep getting better and feeling good as long as he takes care of himself. He will try a treatment and you just hope it works. In the end, live life in the now.
Posted 2/20/2013 7:24 PM (GMT 0)
Mae, maybe Richard will be lucky and not experience hep C symptoms for a year. David here got a good year before he had to do treatment. I am now facing treatment...probably next month. My hep C reared its ugly head after only one month out from transplant. I'm experiencing extreme fatigue, but nothing else.

I can only hope that treatment works for me, as I would not go through another transplant. You are right, though...the ones w/o hep C do much better post transplant.

Hugs,
Connie
Posted 2/20/2013 9:39 PM (GMT 0)
       as with all diseases, the sickest patients are generally overlooked when researchers study new txs.  we are are the ones who slip thru the cracks. 

       i really didnt want to post.  i wanted to see if i could make a paragraph.  hey ziff it worked.  now give me a tip on how to make a capital letter with only one hand. i have small hands.

       ok!!   i have advanced ms with a hep c kicker, that is also late stage. when i see all the new txs. coming down the pipeline for chronic disorders, i get excited .  but it doesnt include the hard to cure(stage 3 and 4).  in ms, all(100%) of therapy txs. is for inflamatory stages(early to mid stage).  some of the txs. could help the chronic active, but insurance will not approve, without fda approval.  "sound familiar". 

      just venting, i always post right before putting on the feed bag. mushu pork anyone.

                barry\

  ps.  now i need to figure out how to put paragraph 2, where 3 is help!!!

Posted 2/20/2013 10:18 PM (GMT 0)
Mae,
I went a year after transplant, before my viral load started to rise. The docs suggested that I do the 2 part treatment, as the 3 part wasn't available for those with a transplant (at that time). I did it for just over a year and I have now been 15 months undetectable. Had I not had the transplant, I'd have died in July 2009, so every day is a bonus. Within a year there appears to be a new treatment that's almost 100% successful, and has no interferon or ribavirin.

Your brother was fortunate to come along at a time when there are transplants and anti rejection meds that work for 95% of patients. Now, there are treatments that work to knock down Hep C. Worrying about "what ifs" doesn't help you or your brother. Be happy that he received a new liver and is doing well. He's going to be fine.
Posted 2/20/2013 10:37 PM (GMT 0)
Connie and David,

When your viral load rises, are you right back to ascites, nausea, vomiting, weakness, jaundice, and lactulose etc? David being undetectable, how long did that take for treatment and did you have those old symptoms DURING treatment? I didn't think Richard would be eligible because he has had the treatment 2-3 times and it didn't work, he has 1a. I thought he told me that when it came up pre-transplant.

I don't discuss this stuff with him now because I don't want to bring him down. I'm not even worried about the stent right now, hoping it will stay put and work properly.

I hope you're right about him trying treatment again if it ever comes out for his genotype. I've heard folks talk about it then I remember what he told me a while back.

PPMguy, pass the mooshu pork please, but don't let on to Ziff :)

Thanks all
Posted 2/20/2013 10:41 PM (GMT 0)
p.s.

Barry,

Had no idea about your MS, so sorry for what you must be going thru. You seem to be in good spirits though and that's half the battle I guess :)

Thanks for the mooshu :)
Posted 2/20/2013 11:36 PM (GMT 0)
     at the time i feel energised.  i am und for a year now.  my creativity and sense of humor are returning.  

       barry

Posted 2/21/2013 12:08 AM (GMT 0)
Mae, my liver never decompensated, so I never did have all those symptoms you mentioned...just some swelling and constant fatigue. Same now, but just fatigue, no swelling. My main problem is the tendency to develop liver cancer (HCC - hepatocellular carcinoma) from hep C. So I need to get treatment soon, before that happens.

Hugs,
Connie
Posted 2/21/2013 12:13 AM (GMT 0)
Mae,
"When your viral load rises, are you right back to ascites, nausea, vomiting, weakness, jaundice, and lactulose etc? David being undetectable, how long did that take for treatment and did you have those old symptoms DURING treatment?"

I had none of the symptoms from before the transplant. Your liver has to be failing, ie. fibrosis or cirrhosis, before those problems set in. I did the 2 part cocktail for just over a year.

I had done the 2 part cocktail in 2004 and was undetectable from a couple of months into the treatment. Then I had a cerebral hemorrhage 3 months after finishing it and my liver crashed quickly. That's when I began having HE, fluid build up in my legs and taking lactulose to combat the HE. Before I did the treatment in 2004, my liver wasn't that bad, but I wanted to fight the disease as soon as possible. My genotype is 1a.
Posted 2/21/2013 12:20 AM (GMT 0)
OKay good, I assumed that the liver, within a year or so, would be decompensated and we'd be back to square one, with all the attendant horrific symptoms.

And Connie, Richard probably has to be careful about HCC too because when they dissected his old liver, they found a previously undetected small tumor.

Thanks, I feel much better now. There IS hope after all. :)

Hugs
Posted 2/21/2013 12:31 AM (GMT 0)
 Barry , Congratulations you have just passed Typing for Pigs 101 . I can't help with the small hands but do sympathize , I have a hoof to work with . Nubby appendages on each hoof !!!! Do you think Connie gives me a free pass ? Nooooooo !!! Keep trying you'll get the hang of it though .

The only thing I really " what if " about is whether I could have survived without the TIPS and just waited till my MELD score shot through the roof . It remained low for a year while I stayed deathly ill and by then the doctors and I had enough of paracentesis . Would I have had a transplant by now if I didn't do the operation ? Would I be dead from not going ahead with the TIPS ? Ehhh , It's exhausting and fruitless but will always nag at me . Really doesn't matter as Syxx suggested , I'm alive today and extremely happy for the time I have gained pain free .

 Mae , Infinite wisdom is only obtained by infinite ignorance as far as I'm concerned . The smartest people I know made a lot of " mistakes " to obtain the knowledge they have today , and the really smart ones are still screwing up .

 A. Ziffle   

Posted 2/21/2013 12:51 AM (GMT 0)
Ziff, you have such a great attitude about things, and will serve you well in the future, I'm sure.

I guess the what ifs are always going to be there, but you do what you think is best and live with it. I wonder what caused you to have such terrible ascites if your MELD was low. I just assume that it would affect your score. Are you currently listed or are you still too low? Also, what region are you from if I may ask?
Posted 2/21/2013 1:52 AM (GMT 0)
Mae, Richard should have an MRI of his abdomen with Gadolinium contrast every 6 mos. If he develops HCC, they will detect it early and treat.

Hugs,
Connie
Posted 2/21/2013 2:02 AM (GMT 0)
Thanks Connie, I am making a note to ask about that MRI on his follow-up visit. Definitely need to stay on top of it.

Hugs
Posted 2/21/2013 2:39 AM (GMT 0)
 It's called refractory ascites if I remember correctly . I just couldn't get rid of the fluid no matter the medication , Diet or volume of paracentesis being done . Never got a answer for why it happens or if I did don't remember it . I felt like a robot , Get drained of 7 liters of fluid on Monday , Spend the following day trying to get strength back , Wednesday feel o.k but start filling up again , Thursday debate if I can make it to Friday without being drained , Friday remove 9 liters of fluid and on to the weekend just to look forward to Monday . This went on for almost 9 months . The first three months after diagnosis I was being drained twice a month . They pulled 14 liters off my abdomen in one paracentesis once . Miserable .

Not exaggerating , I looked like a malnourished pregnant man . Anyhow when you question what version of hell would be better you may wanna take that into consideration . Not everyone experiences the problems I did but I've seen a couple over the years that I've been coming here . TIPS is the only solution at that point .

A. Ziffle    

Posted 2/21/2013 2:52 AM (GMT 0)
Well I guess you really had not many choices there. I never heard of 14 liters before, ouch! I assume they dosed you up with albumin afterwards?

So glad you seems to be doing good with it :) Thanks for your input
Posted 2/21/2013 4:09 AM (GMT 0)
"Infinite wisdom is only obtained by infinite ignorance as far as I'm concerned . The smartest people I know made a lot of " mistakes " to obtain the knowledge they have today , and the really smart ones are still screwing up ."

My sister asked me one time, "how did you get to be so smart?" I told her, "I just ran out of stupid..."

The problem is.. you really never run out of stupid, do you?
Posted 2/21/2013 4:10 AM (GMT 0)
Barry, to make a new paragraph, press Enter twice at the end of a sentence.

Hugs,
Connie
Posted 2/21/2013 4:21 AM (GMT 0)
Mae,
The biopsy on my old liver showed 2 small tumors. Scared me, 'til Dr. Hertl said they were contained and hadn't spread. Doesn't mean that it couldn't reappear, as I still have Hep C, even though it's undetectable for now. Hep C doubles your chances of HCC.
Posted 2/21/2013 6:20 AM (GMT 0)
Hi Barry, Michele here. To use a capital press Cap Lock, type your letter, press Cap Lock again and you're back to lower case. (Hope I answered a question you were actually asking.

Mae, every decision we make has the possibility of being the wrong one. If we thought about that every moment of every day, we'd never get out of bed (oops, another decision :o). Please stop second guessing and enjoy your birds and all the other beautiful things and people out there. We're here for a little while (in the grand scope of things) so enjoy our brief journey. This life is what it is. The next one is unknown. Read somewhere, might have been here: Yesterday's history, tomorrow's a mystery, today is the present. Think of it as gift, it truly is and you'll get through the panic. Keep calm and have a cupcake.
As Lois Kaufman says, "The cure for anything is a cupcake and a cup of tea". Plus, how can you not smile while when holding one!
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