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Posted 7/14/2009 8:01 PM (GMT 0)
Hey everyone!  I am new to the forum and very confused.  I was just diagnosed with Stage 4 Cirrhosis with grade 2 inflammation.  They found this after a CT was performed looking at my gallbladder.  The doctors missed this over the years and now it is at end stage?  I will be going to Baylor in Dallas for an evaluation soon.  I am confused with the whole process and was wondering if anyone else has been to Baylor or has had doctors miss cirrhosis until it gets to this point.  Any information would be helpful because it turned my world upside down as they are telling me that there is no medicine available to treat this and transplant is my only option.
Posted 7/14/2009 9:29 PM (GMT 0)

First of all, welcome to the forum, 2confused!  Baylor has a very excellent reputation.  Also, you can live with cirrhosis for quite some time before having complications.  Most importantly, don't drink alcohol.  NONE.  Diet is very important.  Stress NO beef, just white meat and fish.  Also LOTS of fresh fruits and veggies.  Diet can go a long way in preventing or slowing the progression of liver disease.  Also follow a low-salt, low-fat diet.

Cirrhosis can lead to liver cancer, end-stage liver disease (ESLD), and other complications.  You may feel "dragged out," no matter how long you sleep.  However, by leading a healthy life style, you CAN make a difference.  However, if it progresses quickly to ESLD, you may need a transplant.  You will learn more at your Baylor evaluation, and also get another opinion.

Good luck and let us know what you find out!

Posted 7/15/2009 7:16 PM (GMT 0)
Thanks for the welcome!  I am glad to hear that about Baylor.  That is a relief.  I was told this morning that the cirrhosis is pretty far advanced and just found out that I am having the fluid build up called "ascitites" (Ihope I spelled that right).  I found this out from the transplant coordinator for my insurance compnay after she reviewed my records and reviewed the CT Scans.  This was one of the reasons for my hospitilazation My "specialist" and I use the term loosely failed to mention this and several other things to me.  I know I am ready to feel better!  The symptoms I am displaying now are possible Wilsons disease and insomnia and mental confusion along with abdomen pain and constant itching.  Thanks Again!

Posted 7/15/2009 9:50 PM (GMT 0)

2confused, it's ascites.  If it builds up too much, you may need to have paracentesis, which is a draining of the fluid.  Many people with advanced disease develop this and have to be drained every week or two.  I had it, but was fortunate to be able to get rid of it through diuretics (Lasix and Aldactone) which I still take.

The mental confusion could be hepatic encephalopathy from the accumulation of ammonia in the brain.  They treat this with a drug called Lactulose, which encourages frequent bowel movements and removes the ammonia that way.

You might want to do some reading in our Hepatitis Resources folder at the top of the Hepatitis Forum page.  The educational topics address some of these issues.  It is not strictly for hepatitis.  I've really been wanting to get the title of this forum changed to Liver Disease.

For the itching, you can try Gold Bond lotion and colloidal oatmeal baths (look for the oatmeal bath in the bath section of your drug store or supermarket.)  There are also some prescription medications and creams that you can request.

Is your specialist with Baylor or will you be dealing with a different hepatologist there?

Hugs,

Connie


Posted 7/15/2009 10:54 PM (GMT 0)
I appreciate the information. My specialist if you can call him that is in My home town. I will traveling to Texas and then trying to find a specialist when I get back. Did you suffer bouts of depression with yours if you don't mind me asking. I am feeling like "what's next!"

thanks sam
Posted 7/16/2009 1:03 AM (GMT 0)

When I was first diagnosed with hep C, I went through all the stages of grief:  Disbelief/denial, anger, bargaining with God, sadness, and finally acceptance.  I went through that fairly quickly, with the help of AA.  When I was diagnosed with liver cancer, I was on antidepressants for awhile, sporadically.  I am no longer taking them. 

Is your current specialist a hepatologist?  That is what you should be seeing.

Hugs,

Connie

Posted 7/16/2009 12:53 PM (GMT 0)

No he is not.  I have been frustrated with him from the beginning.  He has the bedside manner of House from the television series.  I think that is his role model.  Sorry my attempt at humour.  Last night my stepdaughter broke down and we had to discuss that I'm not going to die so that really got my emotions all out awake.  Very few things in life scare me but this is.  I aprreciate the help..  I just had my 4th hepatitis check!  No hepatitis. 

Thanks again for lending me an ear!

Sam

Posted 7/16/2009 9:07 PM (GMT 0)

Okay, Sam, be sure to get a local hepatologist ASAP.  He can then work with the transplant center.  GI docs and primary care physicians are really not equipped to deal with liver disease and all that it entails.

Hugs,

Connie

Posted 1/22/2011 6:56 AM (GMT 0)
smurf  Can't sleep. Can any one tell me how long is THE END is going to last. I am so tired of seeing Dr. Extreemly depressed . (can't seem to tolerate any antidepressents   I think every one who has heard my story is ready to puke when they here poor me had two biopsies because the doctor took  out lymph node and colon instead of liver then didn't have the guts to call and tell me. We had to arrange another one at which time he avoided me again when his rude nurse came in she said "you have ESLD of course we knew what that was but my husband and I did'nt expect to hear it so bluntly. so we said ESLD 'SHE says ya you know like THE END. So my husband asked how long I had she told him judjing by what she thought probably anywhere from56hours maybe 5 years better get to a transplant hospital asap. My ammonia still is over 200 ,the Dr.s say its stress. my memmory boy would I like to have that back. My husband has been so brave and solid for me . all they see is a 3mm spot on my liver I still take the spiranolactone. But lately I haven't had to take the lactulose. They don't know what brought it on some say chronic hepatitis, they just don't know. And I have really just could scream. I have tried to keep things to myself. mY HUSBAND has had enough of me with my mood changes . Seven and a half years later here I am mentaly cooped no where to go no one to listen to my.             smhair smhair sorrry for all mistakes                                      
Posted 1/22/2011 7:25 AM (GMT 0)
June, I wish you had started your own thread to post instead of bringing up such an old one that is no longer active. You would get more input that way.

Were you ever tested for autoimmune hepatitis? In this disease, the immune system attacks the liver. Our moderator, Dany, has this.

As for when the end is, nobody can say. If you have proper treatment and a healthful diet, including NO alcohol, you could live a long time.

I don't understand why you say you haven't had to take Lactulose when your ammonia level is so high??? Surely, you should be taking it. It might improve your memory.

Are you seeing a hepatologist? If not, you should be. It sounds to me that you have not had the most skilled or knowledgeable physicians. I would certainly try to change this situation ASAP.

Hugs,
Connie
Posted 1/22/2011 8:51 AM (GMT 0)
June,

I agree with Connie.  You need to see a hepatologist.  If the doctor you've been seeing is a hepatologist, then you need to see a new one.  Seven and a half years?  So you've had some kind of liver dysfunction that long and they never tested you to find out what was causing it?  Most doctors don't/shouldn't just leave it at "chronic hepatitis" and stop looking.

So follow Connie's suggestions about diet and NO ALCOHOL.  Get to a specialist and depending on what's really going on, you may have a chance at long term survival but don't just sit back and wait.

Posted 1/23/2011 9:53 AM (GMT 0)
Dany

Lost my post so I'll make it short.  Had a pain free great feeling day. No pain meds It felt so great. I guess that's a relaps on fibromialgia. I dont drink alchol .I eat a mostly vegetarian diet. Now they want me to eat red meat and I gag. I got test results today they looked good just off on my kidney filtration. I have a Doctor in my home town He's an Internest. The others are all specialists, Main Surgeon' gastrointerlogist spl  Hepatologist. Heart Lungs. I have a MELD score 9-10 and I am  on the transplant list. I have good Dr.s I am just tired of going 600 miles every six mo.  One of them said I would probably die of arthritis rather than my liver. Which is true  I  have degenrative on all joints 2disks ostoarthritis. ostoperiosis.........I have had Blood pressure since I was 29 . and am in my 50????Ask me no questions besides ?my age and I will tell you no lies.  thanks for the post I really helps  me.         God please grant us all at least one good day.  june
Posted 1/23/2011 7:15 PM (GMT 0)
June, you are on the transplant list without a firm diagnosis and good labs?  I don't understand this.  Also, nobody dies of arthritis.  If a person has spondylosis, which bends a person over so much the lungs and breathing are compromised, then that could kill someone...but not osteoarthritis.

Are you seen at Mayo Rochester or Phoenix?  I know that Mayo in AZ has announced they are no longer doing transplants.

Sorry if I'm not understanding some of what you say.

Hugs,

Connie

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