chirrosis

Hi I am new to this forum,,I am her because of my husband, Back in 1978 and 1982 my husband had blood transfusions and he ended up with hep C now chirrosis. Back in 2003 the liver doc wanted to put him on inferon ,then she said she couldnt because his platlets were to low, and she sent us home, we knew nothing about this back then,, So we went on with our lives,,Now october 2009 my husbands nose was bleeding 2 to 3 hours straight every day, I bought this computer and started searching for answers. We never found a liver doctor till june 2010, They did test on him said he had chirrosis, but know serious symptoms,,Then sept 2010, my husband cant breath from the fluids on his stomach,,plus his feet,,we go back, now he has ascities, adema , portal hypertension, and maybe varisis, the doctor put him on water pills and propranal for the high blood pressure, so then everything is ok, they take him off the water pills 30 days later,, now dec 15 his ascities is back they put him back on 240 mil water pills for a week, he losses 22 lbs then they drop the dose to 120 mg with he is still on to this day plus the propanol, I forgot to mention he bruises daily his platlets were at 39 back in oct, but they went up to 55 in dec. He has diabities has to go on insulin, I cant get any paper work out of the doctor < My husband asked the doctor what his meld score was and she said between 14 and 16 ,there is no inbetween we all know that,,Then she asked my husband if he wanted to go on a transplant list,,were in canada and its free ,,why wouldnt he. Then the other night I took him to emerg because he was vomiting ,they gave his a shot of insulin and a I V because he had dehydrated,,anyway I asked for a copy of the blood test and it said his total billirubin is 37, They have never taken a biopsy and they say they cant,,he has went threw tests ,he has a belly button hernia , he goes to have his varises banned march 14th,he has had no bleeds thank god . He does have days were he sleeps for hours then he gets up for a hour then back to bed for hours then stays awake half the night,,next thing you know hes feeling good for maybe 5 days, Im just trying to get everything in here so to understand,Like I say the doctor wont tell us anything,,I need answers from someone who can be honest,, I know the futer is bleak, We have been married 38 years and Im a strong person ,I just need the truth ,, Thanks for any info anyone can give me

Hello Gypsy and welcome to HealingWell.......You made a good step.......getting educated.......We have an education thread in the resource folder near the top of our forum. It's good......please read it and it will answer some of your questions.

I know things look pretty bleak right now......but just as fast as they got bad ......he could make a turn around.......Need to follow the doctors orders and get him on that transplant list.

Glad you found us........try and take care of yourself through this as well.....it's actually imperative for you do so.......not only is this disease hard on the patient ......it does a number on the caregiver as well.........

Lot's of thoughts and prayers........

Gypsy, welcome to the forum.  I always feel really bad for those who contracted hep C through no fault of their own.  I have it (diagnosed in '93) from IV drug use (shared needles) in the late 60s.  I do wish your husband could've checked out treatment options again.  Now, I think he is probably too sick to undergo treatment.

The nose bleeds and bruising are due to clotting problems, which is common with liver disease.  Portal hypertension causes the ascites.  We have a Medical Terms thread stickied at the top that you can use to familiarize yourself with these words.

I also would urge you to read the information in the Hepatitis Resources folder to learn what you guys are up against.  In addition, read some of the posts here, which contain lots of good information.

In addition, you should ask about a TIPS procedure at your husband's next doctor visit.  This helps eliminate the ascites.  However, this surgery carries its own risks. He cannot keep getting drained too often, as it's dangerous and there's a risk of infection.  I don't think his varices are being "banned" but banded.

I'm assuming your husband doesn't drink.  If he does, he needs to stop NOW.

If you have any questions, please feel free to ask.  Someone here can likely answer any question you have.

Hugs,

Connie

Hi gypsy,
I never turned yellow, even when my liver was failing. People said I looked grey. You might want to try finding a hepatologist online, rather than deal with what sounds like gastroenterologists. This would probably mean traveling a ways for you. It could be the only solution for a proper diagnosis. I'm open to any questions you have.

Thanks for the info,,now that you mention it david he does look grey and has for awhile now,,,my question is can a doctor give him something for it. The are 3 doctors here at the liver clinic we go to its a GI clinic and the doctor anounced himself as a liver doctor when we went there,,They take blood tests every month as we have monthly appointments,,Were waiting for a phone call from toronto thats where we have to go for a meeting for the transplant list,,But the doctor did mention here that he was worried about my husbands kidneys,,we go back on feb 22nd .And this time I will demand copies of the blood result,, because Im getting fed up with them not answering me. I use to get copies off my family doctor but then they stopped sending him copies back in november, I dont know why, all I can do is try,,I read alot of stuff on the net and it looks like my husband is in decompaseted chirrosis ( I cant spell) With all the symptoms he has,, so ya that wories me,,I guess all we can do is wait and see,,I just wish there was something that can be done,,but I know there isnt..thanks again

Bravo, ML!  Wonderful post!

Gypsy, in answer to your specific question, no there's nothing I know of that they can give him to improve his bili number or his coloration.  But eliminating red meat, keeping a low salt diet, upping the fruits and vegetables helps. 

Hugs,

Connie