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Hep C Discussion Forum -> General Discussion -> portal hypertension
Post Info TOPIC: portal hypertension
Michaele


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portal hypertension
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Hi from Greenville NC.  Home of the worse Hep C care Ive ever seen or read about. Sorry to hear how much you have gone through, but your stll with us. Im Michaele like Michele spelled wrong :62, DX 2001 infected in 1971 if my guess is right. type 1 stage 3 . going for UPPer GI 9/18 to check things out. Had a biopsy of pancreas at Duke 2 yrs ago was neg, and well I was knocked out and didnt wake up til almost back to Gville, Had to call dr to see what he said to me. I still dont know how I made it to the truck. I was a RN for years before DX. Just got to sick to work, told gp; need liver panel which she said was slightly elevated nothing to worry about.  more dr s more test more meds. getting sicker . Then one day she leaves , I told new dr and he flipped out because she didnt redo panel in a few weeks and check for hepC. Sent to a hepatologist who says I was not a candidate for TX and because Im bipolar would kill my self on tx. He left so I was sent to a GI whose only desire was to do a colonoscopy. Dropped him and got a referral to a woman , who I thought was a hepatologist but was GI .  I liked and trusted her . But my Hep c  tx was wait and see. Well. we waited to long. She started to get nervous when platelets started to drop but still waited to suggest treatment then I dragged my feet for 6mo .  I have to wonder why she didnt do a liver biopsy until I insisted; that was done in 8/12. CT a week later showed change from last yr in portal veins ;  rest is history, plus now I had spot on spleen and a shrinking kidney. I still Have a 18yr old at home, just graduateded in june. I wanted to put off TX til he moves out. Well , he wont move, so it looks like Im going to try to do this with him around. We have anger issues and Im concerned about that.  I feel pretty good most of the time except for what I thought was a few gallbladder attacks. Guess Im just used to feeling like a rag , so I dont notice  it. well, enough about me. You have become my new hero, you have given me hope. Thank you. Tell me more about yourself and your treatments , aches and pain and good stuff ,too.               Michaele in Gville



-- Edited by Michaele on Sunday 2nd of September 2012 03:54:22 PM

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Van


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I have had portal hypertension on and off for years. I have been tapped (needle put in to take out the water) and even put in the hospital for infections to the fluid that builds. I said all of that to say that it can be managed early on with medication that make you pee. (can not spell the drug name). I am off the drugs now since the transplant but I still have to watch my salt. So this is MY experience...

Take in as little salt as possible. Never add salt

Do not stop taking in fluids as that will cause more of a problem.

Quit all sodas

Watch for signs of infection to the fluid. Not common but it happened to me. This can be nausea, intense pain in abdomen and flu like stuff. If a fever hits 103 head for hospital and let them know about your fluid retention. Check with your doctor but if you do develop this they will want you to be tapped for a sample before they bombard you with antibiotics as that will kill the evidence of your fluid infection. They kept me on antibiotics for 3 years. 

Finally if it gets to where you feel like a walking water balloon then asked to be tapped. It did not hurt and man did it feel good for a couple of months.

I am no doctor just someone fighting this fight for 17 years. Believe me that everyone is different and there are no two alike. You just got to stay educated (glad you are using google) and my experience is that FEW OF THE DOCTORS keep up with the state of the art stuff or spend enough time with you to see your particular needs. I have challenged a lot of information and treatments that the doctors give and saved myself a lot of grief. I once had one doctor asign me one drug for the water retention and just a couple of weeks later his colleague wanted to know why i was on that and quickly switched meevileye.

I use the Mayo (Florida) now because they really take YOU into account. I hated my experience at DUKE and mention that at most teaching hospitals you are normally second to the teaching. Just my opinion.  

 



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Van Tanner Van@vantanner.com 336 314-0446
krowdog


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Hello John and Joe.

Good  you're starting therapy.  Livers can heal some, plus the inflammation going down will help.  But you might want to do a google search with the terms" sulfasalazine, cirrhosis".  This is an excerpt from one of the search results:

"In recent British research involving animal studies, and more recently, human trials for the treatment of chronic alcoholics, sulfasalazine has been found to reverse the scarring associated with cirrhosis of the liver. Cells called myofibroblasts, which contribute to scar tissue in a diseased liver, also appear to secrete proteins that prevent the breakdown of the scar tissue. Sulfasalazine appears to retard this secretion.

A study at University of Newcastle found that the drug may also act to aid the healing of cirrhosis of the liver.[1][2]"

This is a cheap, common drug, that I have used on occasion for collitis.

You may want to research this, then talk to your doctor about it.  I'm sure you can find the actual studies.

Good luck,

Brad



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(Geno 1a, Incivek Triple Tx, 6 month post TX - 9/20/2012 = SVR!!!)
lozeaujo


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I also have portal hypertension.. I just found out I have cirrohisis after years of knowing I had hep C.. I just thought people lived with it no big deal.. Surprise surprise.. Portal hypertension is serious and can lead to all different crazy bad symptoms.. Good luck.. I start triple theropy in 3 months if liver stays compensated..
I wouldnt mind too much about this dying thing, but I have young son at home who needs me..
joe

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joe lozeau
johnbyrnes


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how bad is portal hypertension? just been told on friday just gone ,the same day i started tx, that i have this ,and i might be put on beta blockers,i know its to do with blood pressure,i will google it see what comes back

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john byrnes
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