Stage 4 Hep C Through Coke?

[flashDude]

Hi, I am Johnny, this is my first post,
I have just been told I have Stage 4 hepatitis C.

From Doctors's Notes:
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Cirrhosis (icd-571.5)
the patient is a 43 year old male with hx of hepatitis c genotype 1a with hcv rna 4150000 who presents for follow up, now with stage 4 compensated cirrhosis.
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Can I ask what does this mean,and how bad is it? I am waiting to start a clinical trial for treatment, I think that I will be getting treatment with interferon and rivavarin therapy.

I feel so lost, if I posted a link to the only record I have(doctor's notes & liver biopsy results) could anybody help me make sense of it. I live in Hawaii, and trying to find information, support groups, anything that can help. Any ideas?

My final question is can you get Hep C from snorting coke? In the early 80s I snorted a ton of coke, daily for a number of years, was in really bad shape from living on lots of coke for many years, I should have died of a over dose! I have not touched drugs since 1987 when I quit doing coke.

I have never injected coke, no blood work, nothing that I would think that I could get Hep C from, so I have to ask if this is possible. yes of course I shared the dollar pill, straw, etc. with a number of people you were always coke addicts like I was.

Thanks so  much, and sorry if this is too many questions in my first post, just feeling lost!
Johnny

[nygirl7]

I definitely contracted HCV this way in the 80s.  I too did an awful lot of partyiing with an awful lot of people who did more than just snort even though that was what I did.  All it takes is once microdroplet and bam....

I am glad you stopped drinking - a lot of us know just how hard that is but once I found out I had hep and had to do treatment that was that. Now after I've been cured for over three years I can imbibe on occassion but I was diagnosed at stage 3 so really do have to take care of my liver too.

It sounds like you really do want to learn all you can and let me tell you that can really make all the difference between success and failure of treatment. My own doctor knew WAY less than what the old timers on this forum did and without their input I would have made many huge mistakes. Of course, never listen to just one members advice - there are lots of new folks who think of course that they know all the right things but perhaps they do not.  REmember none of us are doctors so you should always check everything out thoroughly before paying us any mind.

Best of luck!!!!

[Jakied]

definitely, if you smoke or drink alcohol, STOP!  Hep C and Alcohol or Tobacco

are a bad combination.

[pj1881]

Im in my second week of treatment, maybe the old interferon was tougher?? The new slow release PegInterferon you only inject once a week, and Im maxed out for a starter dose... My Hep doc told me the first week would be the worst for sides, and although it was worse than this week, it wasnt that bad at all.. I was "flu-like" for one day after inject.. I noticed the Riba pills taking effect the first few days.. But for me it has been a pretty good start..
In the first memo you mentioned you should have died of an overdose... That sounds like my philosophy.. I lost some friends in the drug war that werent running as hard as me.. So lets be thankful for the days we have and move towards a healfthy future!!

[1958shadow]

yes you can get hep-c from snorting coke what happens is you share a dollar bill or any thing,what happens is it breaks the membrains in your nose and then you pass it on and the little or a speck on the end of the bill and now the next guy pass it an bang now he has the virus.And has far as the interfearon and the repatrole the last time I did it you give your sellf one injection a week and 12 giant pills and talk about side efects,if I would have known what is was going to do I would have passed on it.I ended up with chronic panceittis were now I PUCKED 2 to 4 times a week.put it this way it just like going threw cemo and don't let any one tell you different man I only went 10 month and its a 12 month regement,your sick your joints feel like some busted them you sweat loose your air.you cant perform any sex your to sick.My wife of 20 years walked out after we left the doctors but only when she new I was going to be sick the rest my life.little did she no my work place all manegers got a half a mill life insurance,JOKES ON HER>

[flashDude]

yes I want to understand what I am dealing with, but there is so much to learn. I am slowly learning, but it will take a while.

I am really happy that I found this site as a place where I can ask questions.

Yeah I think i will understand, and things will make sense when the need to.
Thanks for the welcome too!

[jusjames]

well done for wanting to learn so much, and theres so much to learn!
blood panel you guys call it cbc and lft, basically a blood test to see the levels of important enzymes and cell values etc dont sweat it will all make sense as and when it needs to.  welcom e to the forum btw

[flashDude]

Hi,
Thanks so much!
Yes this is the group that I was talking about. I am going to call them tomorrow. I found this website for them:
http://hepatitis.idlinks.com/index.htm

I am hoping that they are still active, as I would love to go to the meeting that the advertise  on the website.

Thanks so much for telling me about this organization!
Johnny

[Mr Liver]

Johnny-
This listing hasn't been updated for over a year but I think it is still active. They should be able to direct you to a support group.

Hepatitis Prevention, Education, Treatment and Support Network of Hawai'i
Honolulu 808-221-6204

Good luck.
ML

[flashDude]

Hello everybody,
THANK YOU SO MUCH FOR YOUR SUPPORT, I REALLY APPRECIATE IT VERY MUCH!

I am sorry to get back to you late, but I did not get email notices as I did for the first one. I changed some settings on my page, and hopefully it is fixed now. Seemed like my email was not valid, because I did not click on the link in the mail. I did so now!

I was drinking (not heavy just a few beers a day), and yes even after I was told that I had hepatitis C, but when they told me that I was at stage 4 I stopped completely!

I am in the process of getting all my records from the doctors as well as to learn about what I have, and what I need to so. going to put a web-site together to have all the information in one place.

@GoofyDad

Thanks so much!
Yes I am scheduled on the 3rd of next month for an ultra sound. This will not be too bad after the liver biopsy, that was the biggest needle I ever saw. I am schedule for the Hep B shots, which comes in 3 doses 2 in the near future, I think they said 1 month apart, and the last one in a few months. Nothing was said about Hep A.

I am happy to hear that there is lots of progress being made with the clinical trials, and it the combination of interferon + ribaviran + a third drug I feel like I will have a good chance.

They did talk about a clinal trial wit me(said I was a good candidate), so hopefully this is something they are thinning about. I think that it takes a while to get in to the clinic trial or to start the medicine as the doctor told me to be patient, in Hawaii that means a long time.

It is encouraging to hear that 4 years ago you were at my stage, and now are fine. Yes I am in pretty good shape, well could stand to loose some weight, the only complaint that I have with my health is that is I feel drained all the time, but I think it is because the heat in Hawaii, that I walk 5 miles a day to get to work and school. I think that this would drain anybody. I am going this week to try to not do as much (like taking the bus instead of walking to school) to see if I get my energy back!

@ jusjames what is a blood panel? and also platelets? I have recently added some tools here on the site, if that is what you are referring to, I have to figure out how to use them.

Also to @copyman, @WriteitDown Maybe I did get hepatitis C from snorting coke with the sharing of the straw/dollar bill, or maybe it was from going to the Dentist in Mexico,
I am not really sure, and I am not sure it matters to me anymore, as it was in the past, and I need to concentrate on the present and future for right now.

@orphanedhawk:
Yes, I have started to read about Hep C this weekend, and found many resources on the net. Especially, I read that there are many people who have it and don't know, and the others found out after they had it for years. I even found a support group in Honolulu, that I will be calling tomorrow.

Living in Hawaii there are lots of places for fish, and I like fish too`-` I need to talk to the Nutrition Department at UH (I actually work there as a web developer, but I know nothing about nutrition!) about what is the best diet for Hep C,and when I get some info, I will share it here too.

I love coffee, and drinking some extra coffee if that is could for the liver sounds like a great idea! I found this website:
http://www.medpagetoday.com/Gastroenterology/GeneralHepatology/16539

@Moeymitt
Yep since finding out that I am at stage 4 I have been panicked, but I am starting to calm down a bit, and deal with things. Yes, very good advice about not worrying as I have a better chance getting killed surfing here than doing anything else, but I have not been surfing lately, I am thinking about starting back up again.

You must be in really great shape if you can run in the Marathon! Yep the fish is so tasty. Yes I feel fine, but after talking with the doctors, I don't get the impression that my liver feels fine.

@IAmTheWalrus
yes, I agree alcohol would be like adding gas to a fire! I am done with drinking. I am scheduled for a ultrasound next week they told me that they would to get a better look at the whole liver, but I suppose that they will also be checking for liver cancer. I am also scheduled for shots against Hep B ( 2 in the very near future, and a third much later). They are only doing for B, should I also get shot for Hep A?

Yes, after reading a bunch here I feel that with treatment I can beat this! yes I am starting to educate myself, as so far the worst thing about going to the doctors is not having any questions, due to me not knowing what do ask, that will not be happening in the future. I am on state's assistance for my medical, and I see a liver specialist at the clinic. He seems good, but then again I have no way to comapre. I will be going to another hospital here in Honolulu, the Hawaii Medical center, which is the only place to get tis treatment in Hawaii. Yes quitting smoking may not be a bad idea at all!


Thanks so much to everybody here, I really apreaite it very much! I would like to thank everybody for responding to me, and I am now getting emails alerts as I got one while writing this, so in the future i will respond much quicker.

Thanks os much to everybody`-`
Take care,
Johnny

[GoofyDad]

Ditto the Walrus.

[IAmTheWalrus]

Johnny,

It's a tough blow, news like that! Forget about how you got it, it does not matter. Coke straws are a vector but it is probably as likely that you got it from an un-hygienic medical or dental procedure, so don't sweat that.

I echo GoffyDad's advice and would re-emphasize the following:

1.  NO ALCOHOL! This can't be overstated where you have an HCV infection and are in stage 4 disease.
2.  Get screened for HCC (liver cancer) with an ultrasound, or preferably a CT scan.
3.  Immunize for hep A&B. An Acute infection of either one could be fatal.
4. Remember you can beat this and recover. Livers are resilient and the trial drugs being used now are showing much promise. Be proactive in all aspects of your care and ask questions everywhere.
5.  A good doctor specializing in liver disease is important (hepatologist).

I think quitting smoking is good advice for anybody. You certainly do not want complications form respiratory or cardiac problems as you fight HCV.

Stick around here. There are lots of knowleldeable people willing to help and support.

Best luck,
Brent

[Moeymitt]

take a deep Breathe!!  You are gathering all your information so that is good. I was in panic mode for many months after getting dx. Went to many docs, every Gi, Hepatoligist in area, all ND, etc. but that was part of my process. Do what YOU need to do. It took me 7 years to decide to tx. Partly because my doc in Seattle said "Aw, don't worry, you will most likly die of something else  so go enjoy life." (he was the 1st doctor I saw for Hep) 7 years later, I think that was not good advice. I wish he would have said, Treat now. I would have but then I started to do research, and more research and do alternative and I am a triathlete, marathon runner, (I visit Hawaii 2x year, raced there in Sept, love the fish:) You can't go by how you feel, go by liver bx and blood work. I feel great!! My liver on the other hand does not.
Good luck and keep focused. Treat.

[jusjames]

i completely agree with your last statement, thats why i was being the devils advocate if you like, i wanted to put over this is serious , but of course the op can avoid decompensation with tx and a good lifestlye , which as you know is easier said then done...thats the beauty of an open forum there many views..but hopefully with one goal!

[GoofyDad]

Fair enough. Thanks.

I view it like heart disease: You can live with it, but you better address the cause and do what you can to improve the situation. Ignoring it won't lead to a good outcome.

  

[GoofyDad]

Johnny -

They will ask you to get an ultrasound - that will screen for liver cancer. The chances of you having that are very low - but high enough to warrant screening. This should be repreated every 6 months. You should make sure it is.

Also, you should be vaccinated for Hep A and B. That vaccine might take additional doses before you register as having antibodies. Again, you should follow up and ask for the vaccination (you might have to got to a private travelers clinic).

The triple therapy is treatment with interferon + ribaviran + a third drug. There are several possible third drugs, all are only available in clinical trials. They are getting great results, even with cirrhotics, where the interferon/riba combo didn't do as well for cirrhotics.  

Your chances of beating the hep C are quite good. Then the cirrhosis might improve, or at least stablize and not cause problems.Four years ago I was just about where you are now - and I'm doing just fine.  

Diet and no alchohol are very important to you. Try to be fit as a fiddle entering treatment if you can.

[jusjames]

not splitting hairs at all!
i read your post as saying " compensated cirossis means no symptoms as in no problem" clearly this is not the case, ithought your explanation painted an unrealistcally positive account.. thats all!

[GoofyDad]

I think you may have missed the "basically" in my statement. I'm not sure why there's a compelling need to split hairs, but I'll maintain that a compensated cirhotic is typically characterized by an absence of outward symptoms, where a decompensated cirrhotic will usually show with symptoms. The typically asymptomatic nature of compensation strikes me as a reasonable introductory approach to explaining it.

[orphanedhawk]

A lot of us here had no idea we were sick until our diagnosis. Hep C is sneaky.

There are a few things you can do. The number one thing is to stop drinking alcohol.

Improve your diet. Avoid processed foods, red meat and salt. Stick with fish and chicken. That shouldn't be hard where you live, yummy ono, my favorite.

There are more complete lists, which you can easily search for here or on a google search.

Some research claims both coffee ( 3+cups/daily) and turmeric are helpful in protecting the liver.

Good luck,
OH

[WriteItDown]

Yes, I agree with everyone above, snorting coke can do it.

I would advise you to try to find a clinical trial where you can do triple therapy -- this is the interferon and ribavirin plus a third, new drug, either a protease inhibitor or a polymerase inhibitor. Ask your doctor -- triple therapy will give you the best shot at clearing the virus.

Good luck to you!

[copyman]

yes you can get HCV from snorting drugs and sharing bills, straws, etc. this means of transmission is more prevelant then first thought.

treating HCV with interferon & ribavirin will give your liver a much needed break and if you clear it is very possiblt that the liver can regress a stage or more with the damage.

best of luck

[jusjames]

compensated cirossis does not mean "without symptoms"   it means you liver is basly damaged but has compensated for the injury thus allowing it to continue its normal functions . if you drink alcohol i suggest you stop now!... do you have a blood panel recently ? what are your platletts like?

[flashDude]

Hi GoofyDad,

Thank you so much for your reply!

Yes, I think that you are right in not dwelling on it, I have been going crazy all week trying to figure out the where I got hepatitis C from, but even if somebody told me exactly how and when, that would not change what I have today.

Actually, I become sick in June of this year and was hospitalized from a infection due to bed bugs(another story all together). However, I kept telling the doctors since then that I always feel tired. They thought it was because I was depressed, but I am not!

Then the doctor noticed that the bottom of my feet were yellowish, which turns out to just be a fungi from wearing slippers(flip-flops). He started talking about Hep C, and I thought there is no way, but the blood test revealed that I did have it. I forget the actually date, but I think that it was in November of last year.

The next step they said was to get a liver biopsy, as it is the only way to see how bad the liver is damaged, and I took that test about  2 weeks ago, and got the news last week. I have been blown away! I went from first hearing about that I have to Hepatitis C to you are at a bad stage of it in a few doctor visits.

Thank you for letting me know what compensated cirrhosis actually means. I thought that it meant that it was the first sign that your liver was failing.

You mean that you can clear the hepatitis C & cirrhosis? this is the most encouraging news that I have read since I found out that i have it.

Thank you so much for your help, and yes I am starting to stop crying and try to figure out what I need to do to understand what I have, and how I have to live my life in the future to be healthy. I am so glad that I found this site.

By the way the doctor told me that I should quite smoking because of hepatitis C, is this true? I don't feel any of the effects of the Hepatitis C, I just feel tired all the time, but I think that might be the fact that I have a poor diet and don't exercise.

Here is a link the doctor's notes too - http://www.hawaiiflash.net/hepc.pdf

Thank you so much i can't tell you how much I appreciate your help!
Johnny`-`

[GoofyDad]

Hi Johnny -

es - I think straw sharing is a vector through which you might have contracted Hep C. On the otherhand, in something like 15% of cases there is no known risk factor and so maybe it came from somewhere else. Try not to dwell on that - it's not important.

Your DRs note seems to suggest you were previously diagnosed with Hep C, and now have progressed to stage 4 (cirrhosis). There are people here, me included, who also have  a compensated cirrhosis 4 diagnosis (compensated basically means symptom free) , have successfully treated the viral infection and are now SVR (sustained viroligical responders).  

I know this is a blow - but it's not the end of the world. You can deal with it, and with new medicines becoming available your chances of clearing the virus are good.

Take care and stick around. People here will help and you'll adjust to the situation as you learn more about treaing this disease. One thing to get used to - you are responsible for understanding what's going on and making sure you're getting the right care. You can figure that all out here.