Feb.15/2012 worse news of my life.(scared)

I just found out I have hep c and cirrhosis of the liver. I have looked all over the internet for something to lift my spirits, but I just hear sadness and hope. I wish everyone the best, and smile for tomorrow. I would like to ask if anyone is experiencing changes of attitude and bouts of anger, as my wife says I have changed and I am not the loving man I use to be. Also I hate being angry in front of my 3 yr old, which my first DR. Said I will not see grow up. Very sad about that.

Post Edited (Bcgrown) : 4/21/2012 3:02:04 AM (GMT-6)

Hi, BCG, and welcome to the forum! I have been where you are now. I know I contracted hep C in '68 or '69 through a brief period of IV drug use, but wasn't diagnosed until '93. I had been feeling really fatigued since '91. I had kicked the drugs in '69...went straight to alcohol, which took longer to get me...but had stopped that in '86. So in '93, I felt like the rug had been pulled out from under me.

The only treatment at the time was interferon injections 3 x a week...which I couldn't tolerate. Aside from the fatigue, I continued to live my life as usual, though had to go to PT work . In '05, I was diagnosed with liver cancer. And again in '11. I shouldn't be here...but I am. So please don't feel like your life is over. Just get ready to do battle with the hep C dragon.

Hep C also caused me to have cirrhosis, sometime between '93 and '07.

As ML/Carol explained, your anger and moodiness can be a result of hepatic encephalopathy. You need to have a test of your ammonia level. If it is high, you should be placed on Lactulose and possibly Xifaxan. However, it could also be part of the grieving process: Denial, Bargaining, Anger, etc. Because life as you knew it is over and now you are facing a new, unknown, slightly scary life. Fear is a result of lack of knowledge, so the more you can educate yourself, the less afraid you will be.

My suggestion to you would be to get a referral to a hepatologist (liver specialist) to discuss treatment of your hep C and to find out if you have elevated ammonia. Also find out what your genotype is. 1a and 1b are the most common in the US and also the most difficult to treat. The new 3-drug treatment specifically for these genotypes is showing 70-90% clearance rates, as opposed to 50% on the "combo." There are also even better drugs in trials now. A hepatologist is the one who should be monitoring your illness and your care.

If you drink any alcohol at all, stop. Same with drugs. Do NOT take ibuprofen or other NSAIDs without the hep doc's approval. Acetaminophen is okay if less than around 1400 mg a day. Cut all red meat out of your diet, as it is the most difficult protein for your liver to process (this will probably not come from a doctor, but as patients we know we feel much better without it.) You can eat fish, chicken, turkey, soy products, beans, and dairy products for protein. Eat more fresh fruits and veggies. Drink pure water. You may also want to meet one-on-one with a counselor or therapist to discuss your mood changes and your feelings regarding being HCV positive.

Check out the Hepatitis Resources folder at the top of the page, as ML suggested. Tons of info in there.

Please continue to post here, as there is a lot of information and support to be had here. If you have any questions, please feel free to ask.

Hugs,
Connie

BC, Good luck on your wait to transplant.

My Mike was 16, 17 for a while, then zipped up quickly in a few months.  When they found a small HCC tumor he went to 22 and was at the top of his list.  He was on the list only 2 more months once that tumor showed up!

His health really declined before transplant where he was confused all the time, had trouble sleeping at night, though he slept on and off during the day, he could not drive, had horrible edema in his legs and feet, and was nauseous all the time.  His electrolytes were goofed up from time to time and he had several hospitalizations where they gave him this or that...albumin, IV fluids, potassium, etc etc.  But he made it to transplant in May 2011.

Hoping for a good outcome for you also.

Where is your center?  Do you know that you can track the UNOS list by center on the Internet and see how many are on the list at your center by blood type, sex, Hep C genotype, etc...you can almost pin yourself down.

Best, Mama Lama aka Carol

I live in Vancouver,BC Canada. Thank you for your time and listening to my comments. I have notice that since I have let my friends know of my situation, very few pf them call anymore or stop by. I get the feeling sometimes they feel like they with catch something. Its sad to think that people can still be like this so thank you for listening. I will check out the link thank you Connie.
Plus I found out I have genotype 3a

Canadian born- Aaron

Post Edited (Bcgrown) : 7/11/2012 11:58:52 AM (GMT-6)

Aaron (love that name!), that's good news that you are a genotype 3. It's easier to treat.

In general, people are not educated about hep C and they do think that it's contagious. When I first was diagnosed in '93, I was working in a large medical office with nurses. When I mentioned that I had hep C to a couple of them, they visibly took a step back. A dentist told me he had to allow 3 hrs. for my appointment, as everything in the treatment room had to be sanitized after he worked on me (nonsense!)

People are more educated now, but not as much as they should be--particularly people in the medical field. One reason I don't like to disclose that I have hep C is because I'm then asked how I got it. I do not want to lie and say I got it from a transfusion, when actually I got it during 18 mos. of IV drug use back in the 60s. I now tell people on a "need to know" basis or if I really trust someone not to run the other way.

I would imagine that people in Canada and other parts of the world still get listed through UNOS, although I've heard that in some places one can buy a liver.

Hugs,
Connie

Thank you for your comments Donna it really helps, I have no family to lean on but my with wife and I see the looks in her eyes of frustration and pain, and not knowing what to do. She has been there for me every step of the way and is great support. But hearing everyone here helps out alot, and hats off to everyone for sharing and caring once again thank you so much.

Donna, thanks very much for explaining that dealing with hep C (or any other chronic illness) is like the grieving process when a loved one dies. I've noted in my first post to Aaron that it may be the grieving process that is the source of his anger, resentment, etc. I was familiar with the stages of grief and recognized that as I went through it after diagnosis in '93. I went through it very quickly, though--talked about it in my AA meetings and acceptance came rather quickly. Being diagnosed with a life-threatening illness is a death in many ways, as one's life as we knew it will never be the same. We say goodbye to our past selves and embrace the present, doing what we have to do so that there's a chance for a better tomorrow. (Note my signature line.)

Hugs,
Connie

Donna,

I certainly hope your 6 month check up provides a huge relief to your mind.

And I certainly know how the mind works...focused so much on one thing that it is hard to start doing other things AT ALL.

I always know when I'm "over the moon" when I can't read.  I sort of wander from thing to thing, doing nothing well.  Symptom: clothes in dryer for 2 days cause I forgot I started it and now everything is wrinkled...  Bed stripped but unmade... How can you wander off.  I'll start one thing then go to another but not really get anything done. And I"m the caregiver, not the patient.

Mike doing really well now, but we have had some family stuff and it puts me back in the treatment, transplant, post transplant mode quickly!  I've had my caregiver hat on recently.

But I think David has given some good advice...wherevere you are it is better than it could be or WOULD be without the treatments or transplant.   When you have given the Hep C a kick in the teeth, at least it slows down!!!!!

Thinking of you...

Carol

Take it one step at a time... don't let anyone tell you it's over ... till it's over... you are at the right place..

If you have a blood clot, it must be dealt with immediately. There is the chance of it traveling to your heart.

Your liver is decompensated, not in "decomposition." Decompensation means your liver is not compensating, but is damaged to the extent that it cannot perform the tasks it normally does.

Are you being seen by a hepatologist?

Hugs,
Connie

That's good news, BC. It wasn't even a matter of spelling, but that there is a word "decomposition," which means something entirely different from what you have going on.

Best of luck with your pre-transplant evaluation!

Hugs,
Connie

Hi, Grandma! I see you are no stranger to HW, but are new in this hep forum. Do you or a loved one have diseased liver? If so, you might want to start your own thread to introduce yourself and your situation to others.

Hugs,
Connie

No, it's perfectly fine, Rose. Thanks for visiting and for your input!

Hugs,
Connie