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wmlj1960


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mallani wrote:

Have you had a gastroscopy to check for oesophageal or gastric varices?

 No I haven't. I would have thought the gastroenterologist I saw yesterday would have done that if needed. But he did nothing except ask a few questions. No lab work, no questions about the lab work I already have had done, he didn't even ask to see the copy of my lab work that I had right there with me. IMO, the whole appointment was more-less a waste of time and $. I plan to be better educated and pro-active when I go to the hepatologist on 2/25/14.

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newmex wrote:

About like here, that's the reason I got on this group, someone has already been through any thing I run into, and are usually even more knowledgeable that my doc.

I certainly agree!

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PeppyHepper wrote:

Another thing about lactulose - if your loved ones are saying you're acting "different" or erractically, you can take an additional dose or doses. The goal is to have about three bowel movements a day. It's nearly impossible to "OD" on lactulose. It beats going into a severe HE episode, or worse, being in a coma.

I live alone and stay to myself usually after cancer took all my family except my sister in Florida who I rarely see, but I'll try to pay close attention to my actions. Why does 'not enough' lactulose cause erratic behavior? Maybe because of high ammonia levels in the blood?

I don't particularly care for the super sweet taste either but I'm certainly willing to drink as much as needed in order to acheive positive results. I slacked off to 1/2 dose yesterday at lunch and supper to lessen the diarrea for today because I knew I was going to be driving 106 miles with limited rest rooms along the way.

I'm having problems with normal bowel movements. Instead, I end up using the bathroom ~ 8-10 times per day but only small amounts come out. I told the doctor about this yesterday but it seemed to go in one ear and out the other, with no solution. 

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Tig56 wrote:

But you've already mentioned that transplantation may be in your future and the success rates are very good.

Actually I haven't done any research on a transplant and how to get on a waiting list. Any information or link to information on this will be appreciated.

Thanks for the info concerning compensated vs decompensated stages!

_____________________________________

 

 



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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mallani


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Hi Mike,

Great news about the booze. I gave that up in 1996, probably 10 years too late. I still have a few cigarettes, much to my disgust.

Ascites is a sign of decompensated cirrhosis, and is due to portal hypertension and decreased albumin. Have you had a gastroscopy to check for oesophageal or gastric varices? These often accompany portal hypertension, and may need treatment. Hepatic Encephalopathy is also a sign of liver decompensation. It is due to excessive blood toxins (and bilirubin) that are normally controlled by the liver.

Best of luck. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
newmex


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hey Mike and Jenn, good to meet you guys, and welcome. Hang in there on the no smoking, I know its hard to quit. Took me about 2 years to get over it and not always have to have a piece of gum in my mouth. I got on one of the forums and you were supposed to get up every day, post how many days you had, and that you wouldn't smoke that day. if you didn't post every one shared numbers and email and someone would call and check on ya. Think the support of people who have been and are going through it helps. Did me. About like here, that's the reason I got on this group, someone has already been through any thing I run into, and are usually even more knowledgeable that my doc. Good Luck, Every one is here for you

 

 

 

 

 

 

 

 

 

 

 

 

 



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John
PeppyHepper


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wmlj1960 wrote:

I just got out of the hospital today. I was there due to excessive fluid in my stomach due to lack of liver funtion which they helped with via paracentesis. Ultrasound shows my liver to have significant cirrhosis, so I'm scheduled to see the liver specialist on Tuesday to get started on medicine.

I'll post more information about that when I find out. Right now I just wanted to introduce myself and say "Hi" everybody.

Mike

 Hello there, Mike. 

I'm new around here too. 

Glad to hear you're now alcohol and cigarette free. Personally, I never did like alcohol, but I do smoke. It's a hard addiction to break, that's for sure. With cigarettes, I'd quit for a few months (and once two years), then I'd pick it right back up again. I assume quitting both was hard on you. It may help to go to an AA meeting, or at the very least, get some counseling so that you remain abstinent, which would be necessary for you to receive the transplant. 

The ascites are pretty rough. Feeling like you're 15 months pregnant. Fortunately, I'm a kind of young lady, so people in public just assume I'm pregnant and open the doors for me. I just let them. My S/O thinks it's kind of amusing also. 

The Spironolactone is used to treat portal hypertension. When your liver starts to fail, it puts added pressure through the portal vein, working it harder than normal. When you have portal hypertension, your body starts to retain fluid, leading to leg swelling and ascites. 

The lactulose is prescribed so that you don't have toxins building up in your system because your liver isn't properly working. After time, this can cause Hepatic Encephalopathy. As long as you take the lactulose, those toxins can't build up as much, because the lactulose essentially makes you poop them out. 

I know you probably heard this from the docs, but I really wanna to reiterate it for you. Be compliant. Take your meds! 

The lactulose tastes horrible, I know. Even if you're not a big soda drinker, I found that cutting with little soda does help, because of its sweetness. I put my dose in one of those little mini Dixie cups like it were a shotglass or something, and I put a little soda in my mouth. Then, I try to gulp down the lactulose and chase it with another sip of soda. It takes some of the sickeningly sweet nasty taste out of the equation. (The texture is a whole other thing entirely, lol.) The doc who gave it to me in the first place said I could mix it with milkshakes or smoothies, but if I had to drink three milkshakes a day, in addition to all the fluid accumulation, then I'd be as big as a whale. Plus, if you're like me, the thought of drinking that many milkshakes is not good. I have to force myself to eat on most days. No way I'd have that many milkshakes or smoothies. I'd wanna vomit. 

Another thing about lactulose - if your loved ones are saying you're acting "different" or erractically, you can take an additional dose or doses. The goal is to have about three bowel movements a day.  It's nearly impossible to "OD" on lactulose. It beats going into a severe HE episode, or worse, being in a coma. 

 



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Jen / Peppy Hepper

The hepper with a lil' pep in her step. 

HCV 20+ yrs, G2b, TX Intolerant in 2002

Hoping to do Olysio + Solvadi soon.
Tig


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Hi Mike,

Good to see you back. Thanks for sharing that information with us. It gives us a better picture of your current state of health. Your AST/ALT ratio is pretty high, which as you know indicates significant cirrhosis. I'm glad you're able to obtain some relief following the paracentesis, but it's unfortunate that you have to go through it so often. Whatever it takes though, right? Right! I'm going to provide you with a description regarding compensated vs  decompensated liver disease at the end. 

I'm sure the drugs your doctor was referring to were Sovaldi and Olysio. However there are still several new drugs still in trial and pending approval. But the former two are quite new and promising. How they help a decompensated liver is being determined. But you've already mentioned that transplantation may be in your future and the success rates are very good. I'm proud of you for giving up the alcohol and cigarettes! Good job Mike!! Stopping them both cold turkey won't be easy but you can do it when you put your mind to it. Good luck and you know we're here for you. I'm a good cheerleader, with hairy legs, but I shake a mean Pom Pom!!!

Best,  Tig

*******************

Cirrhosis is divided into two stages: Compensated and decompensated.

 

  • Compensated cirrhosis means that the body still functions fairly well despite scarring of the liver. Many people with compensated cirrhosis experience few or no symptoms.
  • Decompensated cirrhosis means that the severe scarring of the liver has damaged and disrupted essential body functions. Patients with decompensated cirrhosis develop many serious and life-threatening symptoms and complications.

Early symptoms of compensated cirrhosis may include:

  • Fatigue and loss of energy
  • Loss of appetite and weight loss
  • Nausea or abdominal pain
  • Spider angiomas may develop on the skin. These are pinhead-sized red spots from which tiny blood vessels radiate.

As cirrhosis progresses to a decompensated stage, patients may develop the following symptoms:

  • Fluid buildup in the legs and feet (edema) and in the abdomen (ascites). (Ascites is associated with portal hypertension, which is described in the Complications section of this report.)
  • Jaundice. This yellowish cast to the skin and eyes occurs because the liver cannot process bilirubin for elimination from the body.
  • Itching. Itching (pruritus) develops from buildup of bile products.
  • The palms of the hands may be reddish and blotchy, a condition known as palmar erythema
  • In men, swelling of breasts or shrinkage of the testicles may occur.
  • Easy bruising and excessive bleeding may occur.

 

 



Source: Cirrhosis | University of Maryland Medical Center http://umm.edu/health/medical/reports/articles/cirrhosis#ixzz2sT5xyhh4 
University of Maryland Medical Center 
Follow us: @UMMC on Twitter | MedCenter on Facebook



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68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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wmlj1960


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Sorry about the delayed response but the process is not going as quick as I had hoped. 

I was unable to get the info for how much ascites fluid they drianed during my 1st paracentisis on 1/19/14. I had 2 more paracentisis done since then, on 1/27/14 they drained 1600 cc's, and on 1/31/14 they drained 550 cc's. No infection was found.

I have a copy of 2 lab results done, both on 1/19/14.

Genotype = 1a

AST = 280 / 307

ALT = 44 /52

Just for a reference, my HIV doctor has limited liver lab work done along with extensive HIV lab work every 3 months. I have the results for that done on 12/19/13, AST (SGOT) = 357 iu/l

I was reffered to a Gastroenterologist by the Dr at the hospital when I was discharged on 2/1/14. I made that appointment today and the doctor said I need to wait approx 6 months for some new drugs to be released which eliminate the need for peg-interferon. I don't remember the name of the drugs but I wander if he is talking about Sovaldi and Olysio. Suziq, I wander if he is reffering to these and is unaware that they have been FDA approved. i'll try to get more info on the name of the drugs he's talking about tomorrow.

 I still haven't seen the hepatologist yet. The earliest they can see me is 2/25/14. Maybe he will come up with a treatment plan that I won't have to wait 6 months to start and I can begin planning on how to pay for it.

 I've been alcohol and cigarette free since 1/19/14. After drinking 1/2 gallon of vodka every 2 days (1 qt per day), everyday for at least the past year, quitting cold turkey was pretty rough but I stuck with it. I don't miss the vodka although I do get a powerfull urge for a cigarette ocasionally. I bought some low dose (7mg) Nicoderm patches to help with that until I get more experienced being smoke free.

One more question. How can I know at what stage my cirrhosis is - compensated/decompensated etc?

Once again, thanks for the help and warm welcome everybody!!!

Mike

 

 

 

 



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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mallani


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Hi Mike,

I'm sure you have been told, and you know, that drinking will kill you. Nobody will offer you treatment or put you on a transplant list, if you continue to drink. With decompensated cirrhosis, treatment options are few, but hopefully you can be given a chance. Good luck.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Matt Chris


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Hello Mike

Welcome to the forum from me as well, sounds like you have persevered through many of life's  problems which shows you are a survivor. One of the most important ways to stabilize your HepC is totally eliminating all alcohol and finding foods that agree with your liver.

Finding this site can be a life line for you to help in overcoming the the addictions and understanding how to live with and beat HepC. 

Hoping the best in your future and learning along with us.

matt   



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
suziq


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Hi Mike,

Welcome !!!  I have been on a Merck trial that treats co-infected participants.  It is not recruiting right now, but will begin again sometime this year. 

There is financial assistance for the new FDA approved drugs of Sovaldi and Olysio.  I just posted the financial assistance program for Olysio.

Not sure how long the drug companies are saying you need to be alcohol free before treatment, but it seems I read somewhere it was three months.  The longer you are alcohol free, the better. 

Stopping any addictive behavior is difficult---I still smoke although I know I shouldn't.  Stopped drinking many many years ago 1966--not for health reasons--for behavioral reasons.  My dear friend with Hep C has had a really rough time with her drinking while on liver transplant list and nearly died --was in hospital over two months last year.   

Let us know the results of your liver tests when you get them-- like genotype, ALT AST etc so we can better help. 

We are rooting for you and will help however we can !!!  Many of us have had addiction problems, so we DO understand.  

SuziQ



-- Edited by suziq on Sunday 19th of January 2014 01:22:13 PM

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Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR
wmlj1960


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Thanks Tig!
He didn't get near as much fluid during paracentesis as he wanted because we lost the flow. I don't know how much we did get but we got enough to give me some relief for now. He prescibed 3 drugs for me - furosimide, lactulose and spironolactone, which I believe 1 or 2 of them is to help slow the accumulation of that fluid. I'll start those tommorrow.

The contact information I have for the specialist says "Transplant Hepatology".
I've never been seen by any doctor for HepC, although my infectious disease Dr. does have liver lab work done along with the HIV lab work every 4 months. He was about to refer me to a liver specialist already based on the last lab results. In all honesty, he was wanting to make sure I could continually to stay sober before doing so. I have a long history of alcoholism and have been sober now less than 3 months. After this hospitalization I have more incentive than ever to stay sober and I'm confident that will happen.

I'm fairly ignorant about HepC so I've got a lot of research to do.
I'll know more Tuesday so we'll go from there.
Thanks again Tig!!!
Mike


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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Tig


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Hi Mike,

Hey buddy, welcome to the forum! I'm really glad you found us. It's a great bunch of people, all friends and all very caring. It's a non judgemental group that welcomes what you have to say and wants to share your good days and bad. We understand what it's like to feel lower than Whale Poo and higher than kites, so feel free to tell us whatever you're feeling and trust me, we'll do the same!

Sounds like you've had a bit of a rough time lately. The ascites is hard to live with, quite uncomfortable and miserable most of the time. I'm glad they were able to help you through the paracentesis. Do you know how much fluid they drew off? It's amazing how much they get and then you understand why you felt so lousy. I hope your relief is lasting. Good luck with your liver specialist, do you know if it's a Hepatologist or Gastroenterologist? Have you been seen by one in the last few years for any other hepatitis treatment? They can really help you find the relief you're seeking and it sounds like you need to get this better controlled. I'm glad you're getting in soon. There are a few people here that have just been approved for the off label use but I'm not surprised that some insurance companies are balking at it. The cost of these drugs is astronomical, so insurance will probably get tough to begin with. You can also check with the drug manufacturers for financial assistance, you may have read on that already. If you need additional information on the Gilead program, just let me know. There may also be clinical trials you are eligible for at no cost. We can help you with that info if you're interested.

I'm glad you introduced yourself and invite you to post any results you get. It helps us provide better informed opinions. Be sure to use our search function at the top of the page. There's lots of info on these pages. If you can't find what you're looking for, just ask and we'll be happy to help you find the answer. Anytime you feel like talking or venting, just find a thread on the home page and let fly. We're here for you Mike, I know we can help each other out. That's a great thing about this forum, the people really do care about each other and now you too! Hang in there and stay in touch!

Best to you,   Tig



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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wmlj1960


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I'm Mike. I'm 54 and live alone in Mississippi USA. I've been on dissability for 2 years for multiple health issues. I get out and do stuff occasionally but I usually camp out in my bed watching TV or on my computer. I was diagnosed with HepC and HIV in 1994. I've done good on the HIV taking my meds. But I've never had any treatment for HepC. I just got out of the hospital today. I was there due to excessive fluid in my stomach due to lack of liver funtion which they helped with via paracentesis. Ultrasound shows my liver to have significant cirrhosis, so I'm scheduled to see the liver specialist on Tuesday to get started on medicine.

I'll post more information about that when I find out. Right now I just wanted to introduce myself and say "Hi" everybody.

Mike



-- Edited by wmlj1960 on Sunday 19th of January 2014 06:04:26 AM

__________________

60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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