LIVER PAIN

[pln]

I hope this is not a dumb question but I would like some feed back, I have been feeling ( know it is there ) my live more on tx It hurts sometimes. Is that normal? I find ouy my blood work today since the DR cut my riba hope my hbg has gone back up so we can up the riba again, I will post my findings later, Thank-you.PLN

[sfbaygirl]

There are no dumb questions! Liver pain has been a problem for some here. I am sure others will pipe in.

The liver doesn't actually feel pain, it is the surrounding organs and tissue that feel the pain when the liver is swollen. I have RQP, right quadrant pain, sometimes. Mostly before tx, when I had a bile duct obstruction. It went away when I had a stent put in. Lately I have been feeling it again. It isn't bad, just annoying.

Have you talked to your dr? Mine said to let him know if I was feeling that pain again.

Maybe your liver is revolting from trying to get rid of the virus.  Also have you had any stomach problems? sometimes I get pain from reflux and it feels like pain in my liver.

[NYgirl]

Actually you know, our livers really don't have any nerves inside to FEEL any pain.

The lining on the outside does and sometimes as it shrinks (from the inflammation getting BETTER) it causes pain.  Like a contraction sort of.

So generally when my "liver" used to hurt - I took it as a GREAT THING!  Anytime you can turn something like this into the positive and realize that treatment is WORKING...it makes the pain actually so so good :)

[pln]

LOL,,Thank you both, That is how I am going to be looking at it now treatment is working! I hope to feel this pain all day now!lol

[FlGuy]

I saw the question, but not the answer. How's that injured digit of yours?  People still a little freaked out at the job?

[NYgirl]

lol isn't it funny how when you look at it that way it changes it all?

the URQ (upper right quadrant) pain is pretty common...but when it happens to me and I think of those creepy little viruses DYING (sort of like packmen being eaten up) and think of the inflammation going DOWN...it makes me feel so cool - like Xena the warrior princess ;)

So next time...picture it all in some bizarre way like that and it will help you smile - and that is the ticket!

Treatment DOES work and we CAN be cured - we have to remember whatever aggrevation it takes and whatever pain...just to be able to POST in here I AM ONE YEAR SVR...that is worth EVERYTHING!

:)

[pln]

Thanks again NY, I am always happy when you answer my post, You are a very strong woman and I really admire your strength. What are you talking about being able to post here one year with svr, If all the new people all luckly you will still  be helping us 5 years down the road with your svr. Thanks again.

[Kalio1]

I was told the same thing by my doctor as NYGirl was. Although liver pain can and is caused when your liver is ailing, it can also cause pain while it is healing. I know Mike made a stink about how ridiulous that suggestion was awhile back that your liver healing can cause pain, so I again brought it up to the doctor and he again said that healing livers do cause pain for some. So I guess it hurts either way, when it is going south and when it is headed towards a healthier status. No gain without pain!
Hang in there Pln, you have had a rough go of it it seems, I hope it eases up for you soon.

NY hows that hand doing? I hope it is healing nicely!

[tulsatime]

I feel the same as Kalio and NYgirl. I never had liver pain until treatment. And I always thought of it as my liver shrinking from the inflamation. And my platelets were going up to. My doctor said it was a good sign that my liver was improving cause of the platelets going up. He laughed at me cause I thought the platelets were going up cause of the vitamin K I was taking. Which I still believed help me. My platelets hovered around 50-70. Take care, Debi

[mycoldfeet]

I had reflux also, Doc has had me on acifex since before tx, I just take one with my morning meds, works great.

[sfbaygirl]

I take Aciphex too! It really works. Thanks for posting to me, I was thinking about you and your brain fog (encph..?) and the drugs the dr. gave you. I think I am losing my mind and it is NOT fun. What is the name of the drug your dr. gave you? Is there a test for this, or not? I am going to the dr. today and want to ask about it. Thanks!

[Kalio1]

Be carful,if you are diagnosed with it and it is written in your chart, you are no longer allowed to drive.

[NYgirl]

Hey just a quick note cause you guys are the stomach pains crew...if you do happen to take TUMS or something like Malox...make sure you don't take it around the same time as your Riba - or it will HURT WITH THE Riba ABSORPTION.

And even though it sucks...we all need that big time.

Make sure you space it a few hours apart.

[sfbaygirl]

Thanks for the tip about putting Mr. Brian on my chart. I monitor myself now, when I drive. I KNOW when I am not safe. That would be just one more thing to keep me from going out--not having a driver's licence!

Thanks!

[mikesimon]

I just wish someone would cite a source - an article or study or a published opinion - where it suggests that response to TX is sometimes, even rarely, the cause of liver pain. Everything I've ever read states that it's probably caused by inflamation which causes swelling that results in discomfort.
Andrew Mason, MBBS MRCPI
Associate Professor of Medicine
Division of Gastroenterology, Department of Medicine,
University of Alberta, Edmonton, Canada
December 2002

Question 1a
What causes the Upper right quadrant pain that so many of us have?

Answer
We think that it may be due to an enlargement of the liver.

Question 1b
Is there anything that can be done to help this pain (Liver)?

Answer
Occasionally some get relief from laying on their left side.


Thomas Shaw-Stiffel, MD
Medical Director,
Living Donor Liver Transplantation
Univ of Pittsburgh
Medical Center - Presbyterian Hospital Center for Liver Diseases
March 2003

Question
What causes the Upper Right Quadrant pain that so many of us with PBC  have.  I know the liver does not have nerve endings but the pain is very real.

Answer
Many patients with other liver conditions especially hepatitis C complain about this. Perhaps it's due to stretching of the capsule or outer lining of the liver and that might be the case in PBC since most cases of PBC and other cholestatic disorders have an enlarged liver.

I asked my liver transplant surgeon about the idea of the liver retructuring itself causing the pain. He just shook his head and laughed and said "some doctors will say anything - it's from swelling". Can he be wrong? Of course he can. Do I think that he is? I seriously doubt it but if it makes patients feel better it probably is okay to believe it. I just can't find any evidence of that theory anywhere else but "my doctor said" and if I could find something I'd certainly reconsider the idea notwithstanding my surgeon's take on it. Just refer me to a site if there is one.
Mike.

[Kalio1]

We did site a source, our doctors. People don't really demand studies from their doctors with something like this. The doc says "that pain could be due to your liver healing" you don't say "doc, got a study to prove that?"

[mikesimon]

Yea, that's what I thought.
I do want to clarify: Nothing I've said was meant to implie or suggest that I believe or my surgeon stated that the "discomfort" that many of us experience pre-TX, during TX or shortly after TX means that TX is not working. I had it before, during and for a short time post TX and I achieved SVR in 2004. So I don't believe that the discomfort means that TX isn't working but rather that the liver is exerting pressure against the capsule due to swelling which does eventually resolve with successful treatment.
Mike

[mikesimon]

No we don't say that to our doctors but many of us research what they told us because, believe it or not, they can on rare occasions be wrong. And almost invariably, if they are correct, there is some corroborating evidence in the vast amount of information that can be found on the internet. I haven't been able to find anything that even remotely suggests your doctor's view and I would expect that if it is true there would be something there. Mike

[Kalio1]

You didn't site a study either, you just posted a cut and paste of a question and answer session. Healing on any part of our bodies is often painful so I don't get what the big deal is. It isn't like it affects tx decisions, it is what it is. Some experience it some don't. My  liver never hurt at all until I was half way thru tx. and that is why it came up in a visit.
I DID atually find it mentioned in a paper I read once somewhere along the  line but I haven't relocated it. I figure why bother, it is a distinction without a difference.

[sfbaygirl]

You are absolutely correct about Tums and Maalox. When I discovered this (on this board) I was SO MAD at my dr. for not telling me. When I did he gave me the other script. Jmjm is an expert on this stuff. He says the P1's are okay, but not the others, I think?

[pln]

3rd week blood , alt 22, was 26 2nd week, but hbg 9.6 was 10.1 last week when DR lower riba , but I feel good today and yesterday was a good day so I am sure it is starting to come back up, so we will keep on the same dose of riba as of now. thanks PLN

[mycoldfeet]

I'ts encelelopathy just a word meaning brain not working exactly right, I take lactalose, and tell him exactly what you said to me about forgetting things and words not coming out right, its caused by protiens loose in the blood going through the brain, lactolose takes it and pulls it into the intestines and goes out when you poop, all laymans terms he can explain it better.

[Kalio1]

The way I understand it is once your ammonia level is high enough to require laculose you then are no longer allowed to drive any vehicles. With "brain fog" you are, it is considered a symptom of the meds and the meds both have driving warnings on them, whereas a diagnosis of encelelopathy is a condition that requires the doctor to report to the DMV as is done in stroke cases and other illnesses that affect the brain. It is extremely difficult to change that status once the doctor has reported it to DMV.

[goldyn]

Pln have you been poking or rubbing you liver,if so hopefully you have had a good magazine... ha ha
when i first started tx i kept pressing on it to see if it was swollen, well I really did it then , i caused it to hurt by messing with it so much, well i was worried and told my doc it hurt to touch my liver , and he told me simply to stop doing it ,...well o.k then....

nygirl-Im so glad to hear this news cause in the beginging of tx i did experience some pain, i mean after i stopped squishin it....

[NYgirl]

LOL don't I know that...poke poke poke wow it HURTS LOL

I think we've ALL gone through something like that in the beginning hahahahaha.  I sure did.