Just got the news

Hello everyone.
On August.12 I went to see a doctor regarding stomach pains and extreme fatigue I had been having. Around the 9th I had just come off of a camping trip that involved heavy drinking. Thought I was just hungover and it was lasting a few days. Felt tired, fluish, etc. The pain however was worrisome so I went to the clinic. He ordered some bloodwork and an ultrasound. Ultrasound showed my lymphnodes around my liver, gall bladder, etc, were inflamed and the bloodwork showed elevated liver enzymes. When he contacted me (Sat Aug. 17) regarding this, he requested more bloodwork. I got another test done asap, that same day actually. I recieved a call Monday of this week (Aug.19), with the news that the test showed I was Hep C positive. After a brief conversation, He then asked me to get more bloodwork done, including one that will be done weekly, to monitor liver enzymes. In total I got five different vials taken. Was this the NRA test? Sorry still new to all of this. So as of now I am waiting for more news. He also is setting me up with a specialist.

Ok, now some back info. The last few months I have been drinking heavily. Drunk at least 4 times a week, sometimes more. To be honest in the month of May I drank more days than I didnt. I worked, did other social things but most nights i would wind down but getting myself nice and buzzed or full out loaded. I was dealing with a death and various other things at the time and turned to alcohol. In my life I have made mistakes. Ive experimented with drugs. Ive smoked pot for many years but also did cocaine when id be partying, and eventually tried crack. I also abused my prescription drugs for awhile. I made my biggest mistake in June. I tried injecting for the first time. I borrowed a fresh needle from the host of the party (if you can call it that) And did it. My friend (using MY needle) did the same. I then used it again after him. Both of us certain that neither of us had anything. I started learning things about people in his past, and that he may have been at risk of having Hepatitis, because he had unprotected sex with someone with it. At the time I was naiive to how rare this is. Thinking that he surely had it, I figured i had pinpointed exactly when I got it. His test results came back yesterday. Negative. I couldnt believe it. The first thing I thought was "crap... maybe ive had it for years and didnt know it." What still confuses me is how on earth, he then didn't get it from me, using that dirty needle? Was he just extremely lucky? Anyways, I hardly even know what my situation is at this point. All ive been doing is trying to research as much as I can and not drive myself mad with worry.

Thank you for taking the time to read this, and thank you for all the posts that I have read that gave me perspective and hope.

Hello Lizardd, Don't get all worked up if at all possible. The online searches will only add to your worries. Yes, They are informative but they don't always take into account people who are proactively fighting this disease. Alot of people give up or just don't get treated.

Well as you likely already know you shouldn't be drinking anymore AT ALL!!! Drugs either. Because of your past use and abuse you really need to seek counseling or AA, In fact it is typically required to have 6 months verified sobriety before transplant will become a option if needed. Best to get this done now than wait. What type of physician are you seeing currently. You really need to be seeing a Hepatologist. I was diagnosed with Hep.C originally when my test came back from a local doctors office, It was a month later before I found out I only suffered from alcoholic cirrhosis.

If you do have Hep C then trying to figure out how you got it is useless in the grand scheme of things. Yes, You may want to get in touch with people you had risky interactions with but above that it's a waste of time and energy. Your friend who shared the needle may need to get tested again in the months to come, It doesn't always manifest quickly most times. We have lots of people here that can answer most of your questions and put some of those fears to rest. You just need to put forth the effort to live better and you'll likely be o.k.

Ziff

Wow we all posted within minutes of each other, I'm tired of bringing up the rear behind you Ziffie. P u!

Liz

When we say "treatment naive" it refers to the condition of never having been treated for it before. Tx therapies are tailored to your genotype, and prior Tx experiences, etc. Sorry about the confusion.

Sounds like he's a good friend. You may want to keep the hep news to to yourself except for folks on an "as needed" basis. Many people attach a stigma and may tend to avoid you. Just a thought .

Post Edited (Mae be here) : 8/22/2013 11:23:21 AM (GMT-6)

Hi, Lizardd, and welcome to the forum. I have hep C, diagnosed in '93. I contracted it through 18 mos. of IV drug use in the late 60s...but it only takes one time of sharing a needle to get it. When I got off drugs, I went to outpatient treatment every day, all day, except Sun., for 18 mos. But I drank alcoholically.

I was freaked out when first diagnosed with HCV, so I think you are handling it pretty well. It's great that you are being referred to a specialist...hopefully to a Hepatologist and not a GI doc. There are good treatments out now and even better ones to come soon. So you might want to wait until next year for those, if your liver is not too damaged. You will probably get an MRI of your abdomen and perhaps a liver biopsy.

At the time I was diagnosed, I had been sober for 7 yrs. in AA. I strongly suggest that you start going. I never went to NA, but found that AA worked best for all my addictions. I also stopped smoking nearly 11 yrs. ago. As mentioned, should you ever need a transplant, you would need 6 mos. of DOCUMENTED sobriety in AA, meaning that you make out a form and note the date, meeting, where, time, and then have the chairperson sign it at the end of the meeting. Do this for 6 mos. Then save these forms in case you should ever need a transplant. By the time I had my transplant, I had been clean and sober for 25 yrs., so that wasn't necessary...it was a non-issue. Hopefully, you will achieve sustained viral response (SVR) which means you are clear of the virus, and never need a transplant...but just in case. I never thought I would need one, either. Mine was the result of liver cancer, which hep C causes if left untreated, or the virus wasn't cleared, for many years.

Mae, she was just diagnosed, so of course she's never been treated. But yes, she needs to know her genotype. Liz, genotype 1 is the most common in the US and the most difficult to treat.

Everyone is absolutely correct that you MUST stop drinking entirely. No drugs, either. Eliminate beef from your diet. A doctor won't tell you to stop eating beef, but those of us with liver disease know it's the best thing to do. Beef is the most difficult protein to digest. You want to treat your liver with kid gloves to prevent further stress or damage. Eat lots of fresh or frozen fruits and veggies.

I'm on my way out and running late, but will check in this evening.

I'm glad you found us, and do stay away from Internet searches unless it's the American Liver Foundation or Mayo Clinic online.

Hugs,
Connie

The original doctor that diagnosed me was a primary care physician that my wife recommended I see. She was new to the practice and made that determination based on her limited knowledge with the blood test reports. I was seen by a G.I a few days later who saw no reason to question her findings. Once my parents arrived from out of state and saw my condition and the crappy care I was receiving, they demanded I be moved to another hospital an hour away. I was in no condition to speak, let alone move at the time. My MELD was 28 and I was in renal failure. I woke up a week later in the other hospital ICU.

More testing and a biopsy was done there and it's then when it was found I didn't have Hep.C, just severe cirrhosis. My kidney function returned to normal eventually but my liver was shot and still is. I stayed in that hospital for about 3 weeks and was told I wouldn't likely live beyond 3 months with this much damage. It took 2 years to gain any semblance of life back and went through a few surgeries, but I'm alive and it's been 5 years. I'm alcohol free and no longer use drugs either. You just have to want to live and do what it takes to make that happen.


Ziff

Post Edited By Moderator (hep93) : 8/22/2013 4:38:51 PM (GMT-6)

I saw a big hog's foot in the road en route to the corner store, it was gone on my way back.....someone must've picked it up to flavor their menudo or have a cheap dinner. Ewwww! ROFL

LDD, welcome to the forum. Hep C (and liver disease in general) is not for sissies. It can be very bad in its last stages but can be managed early.

You have gotten good advice.

There are some educational sites posted in the RESOURCES folder at the top of these posts.

Just so you know, there are lots of ways to get Hep C.

A few include: at birth from an infected mother

From a blood transfusion with tainted blood (not so much any more, this happened before they knew about the virus and lots of folks got sick).

Sharing IV needles...well, the usual way, BUT there have even been cases where addicts working in hospitals took clean needles for their drugs leaving used needles in their place...and thus infecting innocent folks.

Tattoos...in recent years that industry has been more regulated, using disposable ink and needles. But some in gangs or jail or wherever they do homemade tattoos, they can get in trouble.

Sharing coke straws with those who have inflamed/bleeding nasal tissue.

Sharing personal items with another with Hep C: toothbrushes, razors...tiny transfer from bleeding gums, nicks, etc.

It is rarely transmitted sexually, unless the sex is rough and each partner is bleeding.

On the battle field, blood products can be shared when first responders deal with the wounded.

And there have been some reports that soldiers inoculated by those "guns" can have shared the virus. We hear of Vietnam era vets thinking they contracted the disease that way.

We have seen reports in the newspapers about the virus living on dental equipment that is not properly sanitized between patients. A couple of dentists have been arrested in recent years for careless practices.

So you see, there is plenty of opportunity to share the virus that are not just from sharing IV needles.

The virus can live a while outside the body and any handling of blood products requires the use of gloves (and goggles in some cases). I keep a box of them at home for use with my partner of 32 years who has Hep C even after transplant. We never even share a bar of soap or towels...we use different colors and wash them in different loads. His are white and I Clorox them. Separate sinks, etc.

We have been intimate until recently when he has been unable and I never contracted the disease in all those 30 some years sexually.

He experimented with IV drugs about the time Connie did.

He was not diagnosed for decades and was a drinking man. He ruined his liver. Sobered up and got a transplant in 2011. There is no need with current testing, early detection and new treatments, for a young person to go downhill.

As a further caution, others have mentioned alcohol. When Mike's liver was determined to be cirrhotic in 2004, they told him that alcohol free, he could easily carry on for another 15 years before needing a transplant for liver failure. He continued to drink alcohol and got another 5 years while gradually failing.

it is a slow disease. Take heed.

Best,
Mama Lama

Post Edited By Moderator (hep93) : 8/22/2013 9:42:53 PM (GMT-6)

Lizardd,
I had a liver transplant 4 years ago, due to Hep C. I did drink, but not much. When I found out about the Hep C, I stopped any drinking. Now with a new liver and my Hep C is undetectable, I could probably have an occasional beer, wine, or drink. But I won't. It isn't worth it. You need to stop and stay stopped. Your last post makes it obvious that you have an substance abuse problem.

Liz

Perhaps you might get some answers on the suicidal thoughts if you see a counselor. If you get to the root of the problem it may go a long way to help with any addiction.

Barry is right (ppm guy), I call him our resident treatment expert :)

You came around at a great time for hep c treatments that actually work in a number of studies. And are less caustic to the body, hence, many folks are actually able to work thru treatment.

As you can see we are a caring group of patients and caregivers and although it seems harsh sometimes, it would be an injustice for us to sugar-coat things so we tell it like we see it and only because we want the best for everyone.

Hugs

Post Edited By Moderator (hep93) : 8/22/2013 9:47:57 PM (GMT-6)

You're right, I shouldn't have diagnosed you. Forget what I said. You'll be fine.

The disturbing thing about you considering drinking in the future indicates that you aren't ready to quit at all. Believe me when I say we've seen many examples of folks riding the fence on this subject. Problem is that you're setting yourself up already to fall into old behaviors and this just after you tell us you are positive for liver disease. Nobody here wrote your words of distress, It was you. You'd like answers but aren't willing to discipline yourself to the suggestions and warnings you've received by us, or more seriously your own body. You have Hep.C and you are stuck with doing the best to avoid complications, and that means a healthier lifestyle.

If the words you typed were spoken to my Hepatologist your chances of treatment would be gravely diminished. Who in their right mind would consider you for transplant or worthy of time consuming treatments with that attitude? Don't believe me? Get an appointment with a liver doctor and tell him you want to get better so you can enjoy a cocktail socially down the road. You have no idea what jeopardy you're putting yourself into. I write this in hopes that you change your view on drinking. The chances of you listening or getting angry and brushing it off is very high but my friend you do need to hear this.

Ziff

Post Edited By Moderator (hep93) : 8/23/2013 2:06:29 PM (GMT-6)

 Mae, It's a flew shot. Yes, It keeps me from growing wings. 

 Ziff