I have so many questions...

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Becoming undone
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Date Joined Jul 2007
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   Posted 9/8/2010 9:33 PM (GMT -7)   
I have PSC (Primary Sclerosing Colangitis), a type of autoimmune liver disease(I've already had a stricture, and had to have it opened)...though I know a LOT about the disease, I am interested in info about transplant (90-99% of patients with PSC will have to have a liver transplant, usually withing the first decade of dx...but I think that stat may be changing)...
So anyhoo to the questions about transplant (better to think of it now, than when I am in dire need)...

1. I don't and haven't really imbibed in alcohol all that much(1-3drinks/year, a bit more during my college days usually when finals were over), mostly because it didn't agree with me(now I know why)...but just wondering if they treat all transplant patients the same...like alcohol, I had some for last Thanksgiving, and I may have a drink (probably not a whole glass)...but when is the cut off point? Will they deny me a transplant listing because I had a glass of wine last Thanksgiving?(thinking if my liver goes down quickly)

2.How do you know when it is time for transplant? (like what are the major symptoms, besides severe jaundice?...I suffer from crohns disease as well, so I have lots of pain and GI issues, not to mention the overwhelming fatigue)

3.How fast do you get a transplant once listed? and or what do I need to do to make sure I get listed? (beyond the meld scores...I understand that to an extent, but beyond that, I'm kinda clueless...

so any and all info on liver transplantation would be appreciated...

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 9/9/2010 5:19 AM (GMT -7)   
Good morning BU,  welcome to HealingWell.  Sorry that you have this disease but you have found the right forum. 
 
Just going out the door to work.......talk to you later.......take care.......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 9/9/2010 5:50 AM (GMT -7)   
Hi, BU, and welcome to the forum! In answer to your question about alcohol, since you rarely drink it wouldn't be an issue. However, for the health of your liver, you probably should not drink AT ALL. Transplant centers are more concerned with alcoholism and how long someone who drank alcoholically has been sober.

Do you see a hepatologist for your PSC? He is the one to ask about the possibility of being evaluated for transplant and referral to a transplant center. You can also be listed at more than one center. However, the evaluation process is lengthy and thorough, including a psychological evaluation. You may not even be ready for evaluation yet.

If you will read the information in the folder at the top of the page entitled Hepatitis Resources (deals with liver disease in general, not just hepatitis), you will get an idea of the progression of liver disease and what to expect. Ascites and bleeding varices are two of the main symptoms of progressing liver disease.

I've never been evaluated for transplant, but others here have (or their loved ones have), so you will get more information from some of them. Be sure to check in often.

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

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/9/2010 6:32 AM (GMT -7)   

Sandi, I've always heard 6 months of documented sobriety in AA, but that is for an alcoholic.  I don't think any such requirement would be made of BU--but she should not drink again for the health of her liver and for possible transplant evaluation at some point.  I wouldn't even consider her a social drinker--more like a light drinker.

Hugs,

Connie


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

arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 9/9/2010 9:54 PM (GMT -7)   
exactly and thanks for the all important clarification of it being documented sobriety...... Mike was told 1 year of documented sobriety at both of the places we checked into for transplant here in MN... but that's probably because of his background of alchoholism... as u said... and we never got past the screeners due to the cancer... so their info might have been wrong too thanks .. Sandi

**David**
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Date Joined Nov 2009
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   Posted 9/10/2010 6:26 AM (GMT -7)   
Are you taking any anti rejection meds for you AIH? As far as how soon you might get on a transplant list, going to see a hepatologist about the disease would be a good start.
"No good deed goes unpunished."

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/10/2010 11:53 AM (GMT -7)   
I think that the criteria for documented sobriety and AA meetings are individual for each transplant center.  There was not time line at my husband's.  It was like 20-25 AA meetings that the chairperson had to sign.  He could go as many times a day or week to get the 20-25 signed meetings.  So he could do it in a lot less time frame than the 6 months or 1 year that other transplant centers required.   In fact he did.......it took him 3-4 months of meetings to get them what they required.  But then again......he had already quit drinking 2 years prior to his evaluation.  That may have played a part in his requirement. 
 
Take care........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.

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 9/10/2010 12:29 PM (GMT -7)   

Hi BU,

I have AIH but I take Ursodiol since I was having a little cholestasis from my azathioprine.  I'm assuming you're on Urso for your PSC?  Do you already have cirrhosis from the disease or have you only had the strictures?  I also read that most PSC patients end up having a transplant.  You really should check with your doctor on when they do evaluations for that or how advanced the disease needs to be to be on the list. 

Please let us know how you're feeling,


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 9/10/2010 12:54 PM (GMT -7)   
DGinSD...thanks for the info...yes, I'm on Ursodiol...I think it has helped...but I still notice a lot of liver pain and other issues (the itching can drive me nuts...)I also know that the "standard" tests for other types of liver issues, don't really show up with PSC until you are the "need liver right now" stage...
Right now, there is an enlargement of the liver, but, no cirrhosis yet...I don't really have a "hepatologist" but I have a GI that I see, actually I see him more often than my PCP, but that is because I've been in a crohn's flare for quite awhile...

It's just that I'm in the "fear" stage right now...I know that more than likely, a transplant looms in my future, and that thought is terrifying...not to mention it means that I will probably feel worse, and that scares the bleepers out of me, cuz I feel pretty crappy right now...I am curious about the info about getting on the list and recovery, because I think this can help with the fear...help overcome that anxiety...

I also don't know how to tell when it gets real bad...how do I tell the difference between this and my other issues? I don't want to always be bugging my docs and sound like a hypochondriac...so I guess these are some the background on my questions...

Thanks everybody...

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 9/10/2010 3:13 PM (GMT -7)   
BU,
Don't fear a transplant, fear not getting one, should you need it. I had mine just over a year ago and now feel much better than I had for the past decade. Not everyone that receives a transplant does as well as I have, but most of them feel better than they did before it. You really need to see a hepatologist right away. Just as you have a gastro for the Crohns, a hepatologist will take care of your liver. One good reason is what you just posted, "I don't know how to tell when it gets real bad." That's why one goes to a specialist, to find out how good or bad things are. A hepatologist will be able to see whether you qualify to get on to a transplant list, if in fact you do need to. If you need to, they'll get you in the pipeline. Don't wait. If there's a major problem, better to find out now, not when things are critical. Good luck!
"No good deed goes unpunished."

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 9/10/2010 3:34 PM (GMT -7)   
BU,
 
How long since your PSC diagnosis?  How often do you go for lab work?  I can't imagine that even with PSC, you wouldn't have some kind of warning before "need liver right now" stage.  The inflammation and cirrhosis caused by PSC (in my understanding) is from the bile ducts being blocked and a build of of bile in the liver.  With that, there would be some kind of change to your LFT's, I'd guess.  your bilirubin would probably go up too.  So I wonder if your itching is because your bili is increased?  When was your last blood draw?  Do you keep all your records?  Are you on any immunosuppressants so your immune system chills out a bit and slows its attack?  Since it is an autoimmune disorder, I'd think they'd try you on one of them and/or prednisone.
 
I agree with David...find a hepatologist, if your insurance will allow it.  I understand you see the GI for your Crohn's and the 2 diseases are common together but you should see a specialist (more so than just a GI) for the PSC.
 
I still have right upper quadrant pain, they can't find anythign causing it.  I think it's just a side effect of having a liver disorder.  I also get itchy occasionally.  My bili is usually pretty good but sometimes it drifts out of the normal range.  I do have blood tests every 3 months and see the hepatologist every 6 months.
 
Your docs are there to make sure you feel OK...so even if you're feeling a little hypochondria...better to get whatever is making you feel that way checked!  Your head will be happier and you'll feel better over all!

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 9/10/2010 8:04 PM (GMT -7)   
Honestly, I didn't think to see a heptatoligist...so thank you everyone...but yeah, I get my blood drawn quite often from both the rheumatologist and the GI...I'm on Cimzia at 2x the normal dose (a TNF inhibitor), Sulfasalzine...both of these slow down my immune function...Oh, I just got off prednisone in April after being on it for neigh on 3 years (my body loved that stuff way too much)...but funny thing, when I started coming down of the prednisone, that is when I noticed the symptoms and pain and they then dx'd me with PSC (and that was in Oct, 09)

I know that my labs go up and down with regard to liver tests (and that is actually a common indicator in PSC)...my bili is normal when I go and see the doc...but I DO have some bouts of transient jaundice(not huge, but it looks as if I got a huge tan overnight...and then my skin tends to be kinda "yellowish" anyways)

BTW, I haven't been a good girl in getting a copy of all my labs...I've just started doing it again, due to issues with my Hb being super low, and not really hearing about this, even though I was complaining of severe fatigue...

And thanks for answering my questions...I know they've been asked before, but I also know (from reading different posts) but trying to find out which are disease specific, and which are universal (like the drinking thing...if they require it of ALL patients...)
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