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Down
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/20/2008 4:47 PM (GMT -7)   
 "I am a 54 year old male. Got Hep C when I was 17 years old. IV drug use. Geneotype 1b. I have a question no doctor can answer. I am very scared, and confused. Been a heavy  controlled binge drinker from age 13 to present, along with numerous pshychiactric drugs that I am sure are toxic to my liver. Stopped drinking abrubtly 3 momths ago. I tested  positive for Hep c in 1995. Had Liver biopsy in 1996. Specimens were of excellent quality, with no signs of inflamation. Minimal activity at that time. Have had liver enzymes level checked every 6 months. Family doctor states they hover around 87.
 Said normal is about 40. Had RNA Quantative test done in London Ontario two years ago. Results were a high viral load of 4.6 or about 5 million whatever that means. When I was 17 years old, I had some flu like symptoms, with brown urine for about 2 weeks, some yellowing of eyes, then it just disappeared. I have had no more symptyoms at all in 37 years. Anyone know why? I am worried to death of liver failure. Though I have stopped drinking, I am very discouraged in remaining sober. Any comments appreciated."

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/20/2008 5:35 PM (GMT -7)   
Hello Down and welcome to HealingWell. Consider yourself extremely lucky that you haven't had any symptons in 37 years. If I were you I would not take for granted that just because you haven't had any symptons that you are out of the woods and start drinking. Are you sure that you contracted Hep C at age 17? Usually you have no symptons period for years. But 37 years sounds like too long of time to be sympton free, maybe you actually contracted it a lot later then you think. But regardless of when you contracted Hep C you should not touch alcolhol again. Don't press your luck.
You've probably have read a number of the other posts. If you haven't ...please do. Liver disease is not pretty when it gets to EndStage.

Take care............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Down
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/20/2008 6:35 PM (GMT -7)   
  "Thank you for taking your time to reply. Please believe me, I got Hep C when I was 17. My best friend and I got it at the same time. He got a liver transplant 8 years ago, and doing poorly.    It was summer. Dirty, barbed, bloody needles. I have never had an operation in my life. No transfusions. This is what baffles me. 37 years is a very long time. I should have liver enzyme levels dramatically elevated. Even my biopsy 11 years ago should have shown some fibrosis, scaring, anything. I know I have to stop drinking. I do an enormous amount of reading, on numerous subjects. Guess I have been in denial a long time. Staying sober is difficult, but I walk an hour a day, and it seems to replace some of the void that alchohol filled. I am retired now, and all I do is obsess with thoughts of an early death."

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 1/20/2008 7:49 PM (GMT -7)   
Hello All,
Down, welcome to the forum. I am a mother of a 21 yr. old son that has hep b cirrhosis stage a-b. 1987 AML LEUKEMIA, 1989 REMMISSION,1992 NO MORE DOCTORS(not sick 1 day 1n 10 YRS).2002 CHRONIC HEPB, 2007 CIRRHOSIS A-B. We were told by the Dr's. by Oct.08 he will need a transplant! Like you, he has shown signs of this disease in the past but so far has been very lucky to be as well as he is and to enjoy each day as if it were going to be his last! He has been down with the flu for the past week but he's getting better! Instead of obsessing about death, Go get your house in order! Go do what you want to do, when you want to do it and Enoy it! As long as it's legal! Like Pink Grandma said read some of these post. You will see you and my Will have it very good! I dread the day my boy get's really bad but I can't obssess about it all I can do is learn as much as I can so I know what to do when that time comes. LIVE,LAUGH and LOVE! You are All in my thoughts and Prayers!
Huggs and Smooches!
Toni  

Down
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/20/2008 8:20 PM (GMT -7)   

  "Thank you for your comments. You sound like a very strong individual. Your son is young, and his chances of getting a liver transplant should be good. I wish to express my deepest sympathy for the pain, and the struggle, you and your son have been challenged with."

 


recovering hep c tx
New Member


Date Joined Feb 2008
Total Posts : 2
   Posted 2/19/2008 5:21 PM (GMT -7)   
cool  Down,
I am a 44 year old mother of a soon to be 8 year old daughter and I too contracted Hep C virus from using IV drugs.  I am currently on methadone and a recovering addict with 7 years clean but I have also started the Interferon treatment even though my liver biopsy was a 1 which is the least damaged it can be and I have never had symptoms either.  The point is , your biopsy was done 11 years ago and you had been continuously drinking, is that right??? I would first of all do not drink any more, ,I know that's what saved my liver so far and have another biopsy done.  I know there is a lot of fear that surrounds this virus but NOT knowing is the worst!! My viral count was 365,000,000 when I started treatment.  With in 30 days or 4 weeks of injections alon with the drug Ribavarin I had brought that viral count down to 1300.  Now you have to know not everyone responds well or that well to the treatment and it can be HELL but I have been lucky enough to have the support of my little girl's dad financially so I haven't had to work and he and my family are of great help with my daughter so when I do give myself the injection and I am not feeling well they step in!!!  The hardest is the emotional toll it's taking as we speak.  I feel like I am paralyzed with anxiety and fear but I am currently on my 21 st week and that's almost half way there!!!  A year seems like a long time but nothing compared to DEATH or end stage liver disease and a liver transplant.  DO NOT give up and for God's sake do not drink alcohol anymore.  You can not be cured but you can go into remission.  Let me know how it's going!!!

Down
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 2/19/2008 7:07 PM (GMT -7)   
 
 "My dear Lady, since my first cry for knowledge in this place, it was people like you, me, so many others, seeking for knowledge, guidance, and most of all if possible, the sharing of truth. In posting this reply, I can assure you, it will probably be my last. I will be told to go away, and get educated. I ask for those responsible, that I be forgiven in advance, they are in pain, and I share there pain, in ways I could never describe. Yet, I will have my say.
  The facts I have read on this site, are not consistent with current findings reguarding ongoing research of the chronological course of HPC.
 I am told that Virol Load, Geneotype, elevated liver enzyme results, are all moot, they do not appear to have an influence, in the course of HCV.
  Yes, I will probably die of liver failure. I have no symptoms. I shared bloddy needles at the age of 17. I was sick for two weeks. Brown urine, yellow eyes, flu-like symptoms. Then it just disapeared. I have raised 4 children to adulthood, ranging from age 32, to age 26. Since the age of 14, I have poisened my liver, with alchohol, hallucionogenic drugs, poison mushrooms, 4 years of shooting speed and acid, stopped at age 19, clean for few years, but continued sporadic binge drinking, mushrooms, pot. I live a clean, and sober life now at 53. I am tired of information. Tired of input. Everything is input. I will live until I die.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/19/2008 9:10 PM (GMT -7)   
Down, I am sorry that you are tired of input. Knowledge is power. Can you get overwhelmed with so much info. Sure. But just step back and give yourself time to digest it all.
And guess what .....you had your say and I am not kicking you off this forum. That's what we are here for to listen and try to be supportive. I'll be the first to say that I am not an expert of Hep C or cirrohsis by any means. If you want to talk to experts you need to get a Hepatoligist. Now they are experts in it. All of us only try to share our experiences with the disease. Do we have very knowledgeable people on this forum ......yes we do... either by experience or for some.... by vocation. But mostly we have a wonderful group of compassionate people that really care for each other.....And that includes you Down.

Recovering Hep C tx Welcome to HealingWell. And congrats on your staying clean 7 years. What a great 1st post. Thanks for sharing.

Thoughts and prayers will be with you both.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


recovering hep c tx
New Member


Date Joined Feb 2008
Total Posts : 2
   Posted 2/19/2008 11:35 PM (GMT -7)   

Down,

I am not sure if I offended you some how, if I did then I am sorry!!  I can only say you too have a right to your opinion and I hope it won't be the last time you are here in this forum.  EVERYBODY has experience with this virus and that experience is what we seek here.  Right, wrong, good or bad.  As Pink Grandma says "knowledge is power".  I am in WA state and am being treated by a great Hepatologist.  He took the time to explain Genotype, viral loads or quantitives etc... I am not an expert but I do know that I belive what he has told me and it gives me the strength to go on with my treatment after 21 weeks I still have 31 weeks to go and there's not a day that goes by I feel like quitting.  But as I said I am 44 with a young daughter of 8 and I want to be around to see my grandchildren. 

Pink Grandma  thank you for your words of kindness!!


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 2/20/2008 10:38 AM (GMT -7)   
Dear Down,

A Hep C patient can have completely normal LFTs and stage 4 cirhossis at the same time. PCR can fluctuate wildly depending on a myriad of variables. You are correct in stating these tests are not good indicators in and of themselves.

A liver biopsy is the only indicator of liver damge. If you want real empirical evidence of the state of your liver, get another one done.

Therapy has been a wonderful support tool for me. Maybe you'd like to consider it.

Best, Cary

Down
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 2/20/2008 3:53 PM (GMT -7)   

  "Thank you Cary. I am aware of normal LFT's, and yet one can still  have severe cirhossis. Sadly, the doctor who did my liver biopsy 10 years ago, will not do another biopsy, unless I agree to undergoe treatment. The reason was a logical one, as he explained the treatment is expensive, as is the biopsy, and there is no point doing another one unless I agree to the treatment. My biopsy 10 years ago showed "liver specimens of excellent quality, with no sign of inflamation, minimal degree of activity." There was no test for viral load at that time, but I had an RNA Quantative test 2 years ago, showing a viral load of about 4 and 1/2 million. Cosidered high. Though I have abruptly stopped drinking several months ago, I am haunted with thoughts of looming death. I just don't understand why from the age of 14, I poisoned my liver with toxic street drugs, alchohol, then finally getting the virus in the summer at age 17, why am I not dead after carrying the viris for 25 years to the date of my biopsy 10 years ago. There should have been some indication of serious damge, or even minimal scarring? I have had a lot of therapy over many years, self destructive behaviour appears to be a curse I was born with. I am careful of the research I do, but it is so frustrating to hear ever changing studies, that cast doubt on earlier theories. It appears there are current studies indicating that it is not LFT's, viral load, nor geneotype, that seem to predict the natural course and history of HPC, but it is the individuals unique immune system response, suggesting a genetic predisposition that affects the rate of progression. Even this appears to contradict itself, since the virus uses the immune system in it's favour. What does one do? I walk an hour a day, abstain from alcohol, eat a very healthy diet, yet what am I doing? Am I strengthening my immune system, only to encourage a greater degree of inflammatory war already going on in the liver? I am confused, so much information.  So many thoughts, so many fears.

 


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 2/20/2008 5:31 PM (GMT -7)   
Dearest Down,

Pull up - you're doing lots & lots right! Keep it up!!! You're obsessing & the virus loves it! Look forward - not back. If not for you - do it for me. We need all the support & kindness we can get.

My RNA Quant was 16M when I started treatment, undetectable at 4 weeks of treatment, and guess what?? Right back at 1M+ 2 weeks after completion of treatment. I'm a 1a - we 1's don't clear. All stats are provided by the drug companies & its totally legal to "manipulate" data and present them to the FDA in any manner seen fit by the drug companies. I don't believe the clear rate claims. There is no evidence to backup the clever idea that doing treatment slows the progression of HCV & associated liver disease (the latest Dr. pitched reason to to do it - no matter if we clear or not). Was it worth it? Hell No/Hell Yeah! If there's a chance we must take it - but make it a very educated decision. Sounds like you are.

We can't change the past. It seems you have a lot of great things going for you now - so let go. The virus loves fear & anxiety. Lots of us did drugs as kids & there's no shame in that - regret yes, but who doesn't have any?

I'd agree to treatment after the biopsy & then (maybe) change my mind about treatment were I you & really wanted the biopsy. Just a thought - if you really want that piece of info for peace of mind. We all have a right to the info & to change our minds. If your insurance will pay for it - I'd get another biopsy. Otherwise let it go & work with how you feel. Make each day count & and as "Oprah" as it may sound - I do start each day with a gratitude list. I'm also a Jew - so its considered "correct" (mandatory in my family).

Yes, many contradictions & you might be onto something with the genetic predisposition theory. Did you know blacks have the lowest clear rate?

I personally manage with diet, exercise, supplements, anti-depressants and valium (sometimes sleeping pills). Therapy is great for me too. I have a good support system & great understanding friends. I'm all about quality of life in the present as I'm with you about all the unknowns of the future with HCV. I take hormone replacement therapy too & my friends freak out that I would knowingly put myself at a potential risk for breast cancer. (I'm glad I don't have to explain this to you). There are no promising new HCV treatments on the horizon.

Please know you're not alone & there are ways to manage depression & anxiety. Give yourself & your body a break - you have been fighting a wicked virus for almost your entire life - of course you'd be "down" (pun intended). Do things you love and try to enjoy each & every one. A kind word goes a long way.

I love movies - saw No Country last weekend. Loved it! I read too & try to get enough rest & please have an extra glass of water for me tonight!

This too shall pass (maybe/maybe not - a Jewish idiom - I couldn't resist). Never give up! You are worth it!

Love, Cary

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 2/20/2008 5:48 PM (GMT -7)   
CaryF, your response was right on (boy-that shows my age doesn't it?)
Down, when I read your response I realized that it doesn't seem to be just confusion but extreme anger. Mostly toward yourself! What is-is-what was-was. IT's time to pick up the pieces and move ahead. You sound very intelligent and well informed and that is a start. Quit beating yourself up!!!!!!!!!!! My own personal theory has been that we often have a predisposition to certain illnesses. I've seen it before and discussed it on this forum. Also, keep in mind that everyone is different and some diseases are dormant for years then suddenly rear their ugly heads. This may be the case with you. CaryF is right, never give up-not ever. Hope keeps most of us alive.
Shelly

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 2/20/2008 9:02 PM (GMT -7)   

Shelly  you go girl!!!  What would we have if there is NO hope!!  And Cary you are awsome!!! I have an old friend that used to day FIDO--Foget it and Drive On!!  I learned a long time ago that anger can eat you up.  Besides its such a wase of energy.  We are all so lucky to have this forum!!

 

JoAnn


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 2/21/2008 1:25 AM (GMT -7)   
Down: I feel like you do, but I just keep on reading. I know only what I have read on this forum about hep C. I had hep A as a child an still remember the long days of isolation in the hospital . I was there for a month, and no one was allowed in my room except for dr. and nurses.
Now I have end stage liver disease. Cryptogenic (unknown) never did drugs, a drink now and then . I have had an anxiety disorder for many years one of them is white coat syndrome so having to deal with all these drs and appointments has been an excuciating journy. Now with this diagnosis I go up and down. But this forum has helped me. Reading about it is almost an obsession with me but thats my way of coping I have to be prepared for the next symptom or next medical mirical that comes up and hoping I can make it that long I am not eager to get a transplant but have gone through the process of being listed
. Talking to others really does help. There are very few meds. I can take now so I am in cronic pain due to my various forms of arthritis. In my opinon I go the disease from over medication my self with over the counter pain meds. Does'nt matter how we go this horrible disease we need to vent. Try coping with it get antidipresants if you need them and the Dr.s day they are ok for your liver. (( Down ))DONT GIVE UP
ONE WAY OR ANOTHER WERE ALL IN THIS SITUATION TOGETHER june

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/22/2008 11:21 PM (GMT -7)   
Hi Everyone, Sorry I haven't had time to post alot lately.

I want to welcome Down and Recovering Hep C tx.

Down, My heart goes out to you. I know that dealing with this disease and understanding it can be very overwhelming. My husband was diagnosed with it in 1994. He has had biopsies approximately every two years that came back good until July of 2006. He was told he has cirrhosis and suffers from several complications caused by it. I have been trying to learn all that I can so that I can help him. I have found it all very confusing and frustrating. I do know that cirrhosis has already begun to take my husband away from me. I will pray that you don't progress to this stage. The doctors told my husband when he was diagnosed that the chances of cirrhosis were minimal, and that most people lived a long and full life and usually died from other causes. I'm not sure this will be the case with him. Know that you are in my prayers and please keep coming back, even if it is only to vent. It has been very helpful to me.
Butterflythree
 
There is always hope!


Down
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 2/23/2008 8:17 AM (GMT -7)   

  "Butterfly, thank you for taking the time to share your thoughts. It is precisely your tragic story the keeps a burning fire of indescribable anger burning deep inside me. It is what prevents me from continuing to post and share any input I have on HPC on this forum. I have learnerd through many years af hard experience in pshychiatry, anti-depressants, the power and deception of the pharmaceutical companies who fund large amounts of dollars towards the research for studies of new diseases, when they cant find one, no problem, they will just invent one, then develop new drugs to address the symptoms, bringing in billions of dollars in profits at the expense of the public, human guinea pigs. I was one for 25 years, until I miraculously found the "road back." A misdiagnosis that made my life hell. I am free of those drugs now, and I have learned that in the majority of cases, the best psychiatrist in the world, is the one "right inside your own head." I am so angry that your husband was told there was minimal damage to his liver. The fact is none of us know what to believe anymore, because the drug companies that fund the researchers (who desperately need money to support there own families, and careers) will only publish the research papers that "THEY" want the medical proffession to know. The medical proffession rarely questions these studies. They rarely publish studies that will not make them any money. The world is filled with mass propoganda, and my heart goes out to all of us who are mislead through motives of greed, money, and power.   I must assume you live in the United States, because in Ontario where I live, doctors will not do a second biopsy, unless you agree to undergo HPC treatment. I consider that emotional blackmail, considering I polluted my brain with dozens of psychiactric drugs, which were at many times wrongly prescribed through poorly trained psychiatrists, or ones who were simlpy too overloaded with patients, that they simply slaped a label on your forhead, and forever made you known to the public as a "misfit." At least I had one psychiatrist that offered an apology, and stated I had the right to sue him if I wished. I am not a vengeful person. Instead, I turn the anger inward, misguided, towards myself. Now that is a sickness that  I am guilty of."

 

  


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/23/2008 10:03 AM (GMT -7)   
Down, You are correct in assuming that I live in the US. I agree with you regarding undergoing HPC treatment. I think that the decision should be the patients not the doctors'. The treatment can be very hard on a person. My husband was involved in a study in 1995 and after the drugs were approved he tried treatment two additional times. The last time he tried and completed the treatment he became moody and somewhat violent at times. We were very afraid at times. Needless to say the treatment was unsuccessful. It was probably a year before he recovered from the treatment. The doctor suggested that he try again last year. I really didn't want him to take the medications due to prior experience, but he felt like it was his only chance and tried again. He lost his job and medical insurance due to the illness so treatment was stopped. He became very ill from stopping the treatment suddenly. While he has recovered from that, now he suffers from encephalopathy, ascites, portal hypertension, and varices caused by the cirrhosis. His doctor, who he has been seeing since 1994 told him last week that they cannot see him again until he has insurance. I just don't see how people can live with themselves. Having the power to decide who receives treatment, who lives or who dies.

I am sorry that the medical community has failed you so badly. It scares me to think that our lives are in their hands. I really hope that things work out for you, and that you find a way to release that anger. I too am guilty of turning it inward.

I will continue to pray for you.
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/23/2008 10:38 AM (GMT -7)   
Hello Butterfly and Down. My heart goes out to both of you. I too agree that the medical field is filled with people who go into it for the money and not because their heart tells them to. The good hospitals,doctors,nurses and techs are hard to find but they are still there. Coming across a caring doctor or nurse really is a rarity these days though. My and husband and I have had a bunch of doozies. But we both have had care by a few good doctors and nurses over the years. If you take the hippocratic oath .....how can you live with yourself if because you have some sort of hidden agenda... you keep people off the transplant list or make it so hard that the patients die before they can even get a liver. I know that they want to have good candidates but to keep people off the list WHILE they are getting counseling (for what ever reason is wrong.) Especially when the patient has jumped through all the hoops and complying with the doctors orders. And they need to to stay healthy but won't list you until you are very sick. Sometimes waiting too long because some have taken good care and followed doctors orders so their meldsore goes down and then take a sharp turn for the worst and die. It seems like your darned if you do and darned if you don't. ( A catch 22.) I think the guide lines for transplantation need to be looked at again realistically. With a big SHOT of common sense. You can not tell me that money and fame didn't play a huge part in that famous baseball player getting a transplant so quickly. I forgot his name now but he died a short while after the transplant. Seems to me he shouldn't have been a good transplant candidate. Guys I'm sorry I am rambling and I will get off my soapbox again.

Just wanted to tell both of you to hang in there. I know it's hard but you both have a lot of people praying for you and your loved one. Thoughts and prayers....
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

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