The Big T.

       This page answers questions
                          about liver transplant & recovery.

Q.

“Sirs: I am being considered for a liver transplant. Have had Hep C for many years. Please give me the symptoms of end stage liver disease.

“Thanks Allan Cooper”

A.

Hello Allan.  Sorry to hear you’re at that point.  On the upside, sounds like you’re a candidate for a transplant.  There are far too many who fall through that big ol’ crack. 

There’s a bunch on the symptoms of end-stage liver disease on Q & A, cirrhosis & symptoms (here); as well as this page: Transplant Q’s.

But in terms of getting ready for a transplant, it’s our opinion that no one says it better than someone who’s been there.  So, I’m gonna suggest that you read Skeeter Todd’s dragon slayer story (here). 

Best of luck to ya, man...

Q.

“Hi KC,

I wrote you in January '07, when I found out my hepc had advanced to cirrhosis. And now, I've just found out today that my Alpha Theta Protein test came back very high (Not sure about that spelling). The range is 0 - 6 and my score is 101. I believe this test is a tumor marker test and from what my new doc says, the good news is...I will now be a good candidate for a transplant. I'm worried of course.  Will they do a transplant even tho' my platelets are low? The doc refered me to the local hospital for a cat scan to get more info and also to the liver clinic in the next town. He said he put in a referal to the transplant team that comes to our town every couple of months. I just got this news at dinner time today and feel like I got hit by a train. I was diagnosed ten years ago. It seems like the dragon moved very fast.

“Any info you can give me on any of this as always, will be greatly appreciated. 

“Be Well, Crystal”

A.

shit yea, Crystal ... I remember you.  It was the altitude question, right?   I’m so sorry to hear about this.  The Alpha Feta Proteins – aka, AFP’s – are the proteins in your blood that let us know whether or not we got a cancer.  

Your doc says, “good news,” eh?  Funny guy.  But seriously, he is right.  If there’s an upside, that would be it.  I wouldn’t worry about the platelets so much, though.  According to Skeeter, ya gotta be just about croaked before they’ll do a transplant.  You really gotta read Skeeter’s story (here).  This man’s been there, done that, with the transplant stuff. 

Cuz what you’ll also see in his story, is that there’s nothing that says you gotta sit around on the mountain there waiting for the “team” to come to town.  You can call around to transplant teams anywhere in the state, cuz as Skeeter tells us, you pick them.

Hell ... I knew of a woman that lived on the west coast, and her sister moved her to Minnesota, because they get more livers there for some reason.   I think ya gotta have some bucks to do that, though.

Let us know what ya find out there, Crystal. We’re pulling for ya, girl.

Q.

"My boyfriends mother had a complete liver transplant due to HEP-C about 5 years ago. As we were discussing his mothers transplant he informed that she still has HEP-C.  Is this true. After a person undergoes a complete liver transplant due to HEP-C they still have HEP-C?  

"Very Confused!!"

A.

Hi Confused. 

Sounds like your boyfriend's mom got in on the value transplant!  You know ... the one where you get a new liver, and they throw in the hep C for free.  Helluva deal.  Right?  ... no?

ok ... fine.  It’s true ... hep C comes back every damn time.  Because while hep C attacks the liver, and that's where it ends up getting us, the virus itself is all over the place.

i can see what you were thinkin' though. If it just stayed in the liver, when ya got a new one, that’d be the end of it.  But hep C lives, thrives & replicates in our blood and RNA (like it shows here).  So, it’s just all over the place.

A few years ago, they gave folks on the list interferon, hoping that it would stop HCV recurrence.  It worked in some people.  But then it was learned that by boosting the immune system that way, some of those people’s body’s rejected their new livers in the first year (a pretty important milestone) & were more likely to develop chronic rejection.  Then you’re really screwed.  

Anyways ... it sounds like she’s doing really well.  Please tell her we send a hearty CONGRATULATIONS for making it 5 years.  Now, that’s a milestone.

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Q.

"My husband had a liver transplant a year ago due to hep c. Hep c is already attacking his liver aggressively and we found this out after his first biopsy. He has had one procedure done so far since transplant for bile blockage. Also already has fibrosis. I'm afraid to ask but need to know what life expectancy is in cases such as his. He spends a good deal of time in the bed because he is so tired and has back pain due to severe osteoporosis.  Thanks."

A.

Hey there, darlin.  If I had a working crystal ball, not only would I be able to tell ya how long your ol’ man has, but also give myself the winning lottery numbers. 

But absent that, here’s what I can tell ya.  Out of all the folks who get new livers, about 77% of them have a functioning liver after one year, and after 5 years, 60% still have a well-functioning liver.*  So, percentage-wise, it sounds like he’s doing pretty damn well. 

It’s normal for hep C to come back to people who’ve gotten transplants due to hep C.  The virus is still in ya and still doin’ its thing (like it explains here).  So it just shows to go ya, that while we may get a new liver, we get to keep the hep C for free.   ... sorta an upside to the whole thing, eh?  ... no?  o.k. ... never mind.

Anyway ... just because the fibrosis is back isn’t necessarily a bad thing either.  We’re not in real trouble until we’ve had cirrhosis for a long, long time.  Then other factors come into play, like how well he’s taking care of himself – and it sounds like you’re doing a pretty damn good job in that department – so he’s a pretty lucky man.

Sounds like he’s lucky on a lot of counts, when ya consider this:

      A friend of mine who’s a liver transplant surgeon tells me that the osteoporosis can be a result of the liver disease, and that usually that gets better after a while.

      Recovery time can vary post-transplant, and partly depends on his overall health prior to transplant.**

      Bile blockage is a pretty common obstacle, post-transplant.  But it’s just that: an obstacle – it’s not devastating, nor does it sign a death warrant for your man.  It may just make his healing take a bit longer.

      Liver transplant patients have about an 87% chance of making it to the one-year mark**, so hell ... CONGRATULATIONS! 

      77% of liver transplant patients have a 3 – and beyond – year survival rate.**  Again, I’m sure a lot of how he takes care of himself comes into play here.

      Most people on the transplant list don’t get a new liver.  I can guarantee ya that if he hadn’t gotten his transplant a year ago, then he likely wouldn’t be here right now.

Then there’s the whole issue of immunosuppressive drugs he’s gotta take so that his body doesn’t reject the new liver.  His hep C doesn’t stand a rat’s chance with his suppressed immune system.  So, I’m not entirely surprised that the hep C’s kicking his butt (i.e. the fatigue).  It’s kind of a balancing act, but makes good sense to me to wanna give that new liver a good, long opportunity to make itself to home.

Bottom line is, these things take time.  I’d guess that – barring any unforeseen problem, or just plain stupid behavior – things are going to get a lot better for him.

A friend of mine once said that, “if ya got one foot in tomorrow and the other one in yesterday, then you’re pissing all over today.”  I’m sorry I can’t tell ya how long your old man has – and I can sure appreciate that this has already been a long & arduous road for y’all – but he is here right now ... today.  So, may all your moments be good ones.

Take’r easy!

p.s. ... This year at Daytona, a transplant survivor & friend, Skeeter, is gonna let us interview him for an article.  Stay tuned ....

* These statistics are from the National Kidney Foundation.
**  This is from Healthgate.partners.org.

then hit the link ...

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