Liver pain following TX

[ADKmtnMan]

Hello Everyone

I know I have asked about this before, but just had sixt TX last Friday and once again my worst SX was liver discomfort.  For some reason, the TX further inflames it, or something, and it lasts for the first 48 hrs after TX and then subsides until the following weekly TX.  Any thoughts?  Anyone else have this experience?  Doc tells me its unusual and he will do another scan if it keeps up.

Mtn Man

[sfbaygirl]

Thanks! I will read it when I am more awake. Looks interesting.

[mikesimon]

I read the article I posted and didn't find it very helpful at all. It was the first site I saw and I was in a hurry. Now that I have had time to check around I have learned that the mechanics of this procedure are not readily understandable and detailed explanations are not very accessible. Here is the most informative site I found and, though it goes beyond what you were interested in, I think you'll find it helpful.
<A HREF="http://www.cookendoscopy.com/articles/fusion_system.html/">LINK</A>

Mike

[sfbaygirl]

Mine was an ERCP,(huge name) which is similar to endoscopy. Camera down the throat...I was out with who knows what. So maybe it wasnt' really surgery, but I think that's what they called it.

[mikesimon]

I don't know much about caanulation except that I believe it involves the insertion of a guide wire. Here is a site that deals with this stuff.
http://www.medscape.com/viewarticle/492322
Chronic Pancreatic Pain
From Medscape General Medicine

[mikesimon]

I see that now and I do know ERCP. I had probably 25 endoscopies and several ERCPs primarily due to bleeding varices. I actually began to look forward to them because I bled out twice and was frightened to death that I'd bleed out again so I needed reassurance. And I got to the point that I loved Versed so much I would try to stay awake and alert just for the sensation of it.  
I should take more time reading the posts before responding. Yeah, they call a lot of things surgery which we wouldn't think of as surgery but they probably get paid more for surgeries. My dentist called something surgery that was really over the top. Oh well, I didn't pay for it so I shouldn't complain. Mike

[sfbaygirl]

I just picked up my ERCP report and it says they stated, " There (were) several attempts were made to selectively cannulate the right duct but were unsucessful." The common bile was swept of stones.... Do you have any clue what it means to cannulate the bile duct? Why couldn't they do it? I asked if he checked my varices and he said, "no, not unless you have a cirrhosis dx." Well how am I to get one dufus? He won't do a biopsy.

[sfbaygirl]

No, I am not worried about it now that I have had the Fibroscan. I was worried before this though. My bile duct was distended, this is why I had the stent, but why couldn't they get to the other one? I think it's strange. I know very little about all this stuff, but the more I read the more I realize how shoddy some of the procedures are reported and done and how lacking our tests are for such things.

[mikesimon]

Do I understand you right - that you underwent surgery for the stent? Mine was placed during endoscopy and for that I just had versed. Mike

[sfbaygirl]

Not a lot to tell, but my pain before wasn't bad. I had an ERCP to  see what was going on. Sure enough there was yellow bile piled up behind my bile duct, so they put in the stent. It didn't take long, but I was out.I was in pain afterwards and the nurse told me all that was ordered was maalox. I had my own pain meds thank goodness. Pancreatitis is a problem when doing this kind of surgery and luckily mine hurt like heck for a week and left. I stayed all night at the hospital too, when I was leaving the new nurse said I had morphine ordered all along and asked me if I wanted one for the road. I took it! Mine was not taken out. I had some URQ pain several months ago and had another ultrasound. The bile duct was fine. Must be something else? I would think that stent would stay in forever, otherwise the leaking etc. would start again, huh?

One night in the hospital and it was 23,000. bucks. Didn't even take the Maalox!

[sfbaygirl]

I have had "liver pain" before tx and didn't think anything about it. I have so much other pain, it seemed like nothing. After an ultra sound the dr. said I had a blocked bile duct. He asked if I had pain when he saw the scan...I said no, but where would the pain be? He told me URQ. I said, "yes, I have that..." ended up in the hospital having a stent put in my bile duct. I have had some pain here and there with URQ pain, but in the scheme of things I suppose I should pay more attention to all the symtoms and don't. Like Mike says, sometimes I wonder if it is in my head...but in my case it was real. I don't want to be a pain complaining, besides no energy, going to the dr. everytime I have some problem. Most likely, I should go more often, and don't. Too many dr's, too little energy.

[mikesimon]

I had a bile stent put in too. Mike

[mikesimon]

After I was transplanted I woke up and had 3 tubes (or was it 4 - I can't recall) for drainage coming out of my abdomen with little bags attached - they looked like little baby clear hot water bags. Anyway 2 or 3 got pulled early but the bile tube stayed for 90 days. I remember shortly after transplant my sugeon grabbed the bag attached to the end of the bile tube and said "that's the money bag and the color looks good". Anyway, at the end of the 90 days I was dying to get rid of the tube and bag because it bothered me when I slept and it had gotten pulled out a little once and I had to go to the hospital to get it fixed up. So I'm there with a woman from my office and I'm excited to get it out and even have luch reservations at a Cambodian restaurant for after the event. My surgeon said to me that there was a 5% chance of a bile leak when he pulled out the tube. I asked him how we'd know if there was a leak and he said I would have pain. He pulled it out and within 1 minute the sweat was pouring out of my face and I was in incredible pain -  an extreme burning in my stomach. I was MFing all over the place and they were waiting for a gourney while I was in this really excruiating pain. The woman with me said "can't we put him in a wheel chair" and the nurse sheepishly said that would work. I got in and my office worker (she's a karate black belt and a fitness freak) literally raced me to the ER. I got morphine and a stent put in and spent the night there - so much for the Cambodian lunch. You know, I'm embarrassed to admit this but I don't recall whether the stent was ever removed. I tend to think not because I believe I would remember it if it was. I never had any pancreas problems but my situation probably isn't illustrative of the possible ramifications of bile stent placement. That was a rather long and boring story I suppose. Sorry for that but I get started and I can't shut up about this stuff. Tell me your story if you've got the time and inclination. Mine is the only story I know regarding bile stents and I'm the curious sort.
Mike

[sfbaygirl]

Did you have any pancreas problems afterwards? Mine bothered me for several days and thankfully went away. I have a nice colored photo of the blockage though. Does the stent stay forever?

[MissMiss]

I remember it being asked before but just can't find the answer in the fog.  

The pain/stitch in the side like when you run awhile, is that associated with the liver or what is it.

It works for me to think the URQ us my liver healing but I'm afraid Mike is right.  Shhhh.  I want to believe it's getting better!  lol

miss

[mikesimon]

I would caution you against incoporating "liver pain" into your decision making process. I have trouble distinguishing the physical from the purely psychological at times and I think I recall having liver discomfort after becoming undetectable and possibly after reaching SVR. Since a lot of us have inflamation and swelling it isn't surprising that we perceive a discomfort in that area and I personally don't think it has any real probative value in terms of treatment success. I know I got discouraged over every imaginable and/or imagined symptom and though I guarded myself against allowing this stuff to affect my mood it nevertheless did at times. Then I would make myself back away and get my perspective back and do what we all have to do - persevere one step at a time. So try not to get discouraged by this and make your decision on the factors that have some degree of reliability. I wish you good luck and peace of mind. Mike

[aiuta]

Thanks for the clarification. I'm trying to decide if I should extend or not, and I seem to be interpreting things in the most insecure way possible.  Thanks for the note, Aiuta

[NYgirl]

I tend to actually agree with MikeSimon on this one.

But unfortunately I've never heard of anything else as a reason with any sort of fact to back it up.  I do think it's more intestinal or something else and not the "liver".  

Since there really isn't such a thing as "liver pain" I've wondered when I've read this subject if it's not some other pain that is nearby in the URQ that people mistake for liver pain.

But since it's not going to hurt the the chances of SVR or anything or anything to worry about...just take it as a simple pain and don't sweat it.

Only if it was causing extreme distress would I really address it to a doctor - not if it was just a "pain".  If we can't find it on the internet or in discussion...chances are they'll think HYPOCHONDRIAC when they look at any of us.

They just don't GET side effects - both physical AND mental wide.

[mikesimon]

I hope that I didn't give you the impression that I think it's a bad thing because one has liver pain - one who has HCV and is treating, that is. I simply believe that it is symptomatic of liver inflamtion/swelling. What I do not believe is that a decrease in inflamation/swelling causes an increase in liver pain or discomfort. I don't think it hurts to believe this if it makes you feel better but I don't think there is any factual basis for it. I have searched this subject way too much and I have never found even a hint of this theory anywhere but if you can find something other than liver inflamation = liver swelling = capsule distention = pain/discomfort I would love to see it. I and many people I know have had this pain and gone on to SVR so I don't think it's a negative predictor but it's what it is  - swelling. Mike

[hepcD]

You may want to drink alot more water a few days before shot night and be sure to take tylenol. I had same problem and the extra water or gatorade and tylenol has helped.

[aiuta]

Thanks for your post.  I was just writing a note to my Dr. about the liver pain.  For me it usually happens 1-2 days post shot (currently on week 20).  It has concerned me.  I brought it up to the Nurse Hep specialist, but her response was vague.  There have been some good posts here about liver pain, if you check the archives.  Thanks for sharing.  I'm sorry you have this symptom too.  Let's hope it's what they say about it being a "good" thing.  All my best, Aiuta

[mikesimon]

Several of us have kicked this "liver pain" subject around and we haven't always agreed. I have and will continue to disagree with the idea that a reduction of swelling causes pain or discomfort. I believe, and everything I have ever read suggests, that the pain is due to distention of the capsule which surrounds the liver. This swelling or distention is caused by inflamation. I don't know why your liver bothers you more after your injection me but I don't think that the timing changes the underlying architectural reality - you have liver inflamation and swelling.

From: http://janis7hepc.com/Symptoms.htm
"Many Hepatitis C patients feel a variety of abdominal pains and discomfort, but unfortunately too often these pains are dismissed as having nothing to do with chronic liver disease. This is because abdominal organs are not responsive to many things what would normally elicit severe pain. <B>The pain fibers in the large interior organs, such as the liver, are usually sensitive only to stretching or increased wall tensions, which is what happens as the liver becomes inflamed.</B> About 20 percent of patients complain of pain over the liver area, in the right upper side of the abdomen just beneath the ribs. <B>Some experts suspects this could be Referred pain caused by inflammation and swelling of the covering of the liver.</B> This pain also may occur in the right shoulder or to the back between the shoulder blades."

Mike

[NYgirl]

I'm sorry I have no idea why you would be having such huge inflammation at treatment.  More likely, it's the liver capsule shrinking which is a good thing. Inflammation going AWAY.

It did hurt a bit in the beginning of treatment in that area but that was about it and it hasn't happened to me in a while. I think it straightens itself out.

Or maybe it's a completely separate problem - an intensinal thing that just feels like it is by your liver? Since our livers don't have nerves to "feel" anything...and inflammation should be going DOWN it's probably all just a good thing anyway :)