feeling really really angry

[panthyra]

I was just told I have hep c.....I went in thinking I had a thyroid condition and a few days later I find out I tested positive for hep c (11.0).  My alt/ast were 76/68 and my platelets were 114 so he sent the test back for hep c and mono.  I came back for both.  Just went in for RNA PCR and my viral load was 140,000.  Today, not a week later I know more than I ever wanted to know about this disease.  I have no idea how I got this, my husband is being way too calm about it all considering that 6 months ago he was diagnosed with MS.......WTF!!!!!!!    I was already at a breaking point with his most recent flare.  I feel caught up in this awful feeling of numbness, shock and even denial.  I feel like I am shedding off the old me and will have to emerge a new me in my new awful normal.  I am angry he has ms and I have hep c....I am angry that I may have given this to my 3 year old....I am angry that there will be people to judge me and my hep c status....I am angry that I don't know who to be angry at at.  
I feel overwhelmed with the idea of choosing a gastro who is open-minded about treatment options.
When will I stop feeling like this?

[Magnum]

There are 270 bones in a human adult. Hopefully you won't break the other 130. Ever thought of not doing so many dangerous feats in your life? What were you doing? Bungee jumping without a bungee? Gee wiz that's a lot of breakage.

They say that once a broken bone heals, it's stronger than the original. I don't know if that's good to know. I broke a total of 7 bones in my life. I can't imagine 140. are you still able to stand up? I wish you the best and obviously no more broken bones. Maybe you should try some easy activities like watching TV and eating popcorn. Best of luck to you...

Magnum

[Diane12855]

First off... you'll get a lot more responses if you start a new thread instead of tagging onto an existing one. You do that by scrolling to the top, click "Back to Forum" then click the green button that says "Post A Question". That way when you post your question, everybody will see it.

How in the world did you break 140 bones in your short lifetime? Sounds like you are lucky to be alive at all.

Have you ever done treatment? By that I mean the Interferon and Ribaviron. You mention that you can't afford the viral load... what was it the last time it was checked? Yes, joint pain is one of the symptoms.

Why don't you re-post like I told you above because there are people on here with a lot more knowledge than I have that can answer you better?

Diane

[krash57]

Hi everyone. My name is Krash Campbell. I'm a 52 yr. old male from Tenn. I was diagnosed with non-A/non-B in 1995. I was infected from a tainted blood transfusion after an automobile struck me on my bike when I was 10 yrs. old. I've lived with this disease most of my life. I've had a liver biopsy that showed the final stages of cirrhosis. On top of this I've had numerous injuries. Over the years, I've had 140 broken bones, a shattered right knee and hip, neck broken twice, back broken, about 6 lbs. of stainless steel and titanium, two plates in my head, 22 head injuries and concussions and about 40 surguries. I've managed the Hep pretty good over the years with herbal remedies and diet. I'm a Vegan. No dairy, no meat, no sugar, nothing. You're probably wondering what's the point in living anyway. Hep C has had a dramatic effect on my life. For instance, I used to see a beautiful woman, and I'd think to myself "boy she has nice eyes" or "boy what a gorgeous smile." After thinking about liver transplants, I now look at the same woman and think to myself "I wonder what her liver looks like?" Lately I've been having incredible joint pain. I'm 5' 10", and my weight has just dropped below 140 lbs. I used to be very athletic and played college football until I blew my knee out. I'm not familiar with the joint issues. Has anyone else had problems with the pain in their joints waking them at night. I was diagnosed with fibromyalgia in 1997, but it seemed a mute point in the scope of things. My muscles are atrophying, and my weight keeps dropping. My last blood work had my liver functions at near normal. A long way from the 700 times the norm when I was first diagnosed. I am uninsurable, so I can no longer afford the viral load by PPR. I have to visit my doctor monthly for prescriptions on a cash basis. Thank you for any input. "Heal the mind, the body will follow" (Krash Campbell 2007)

[panthyra]

Not yet..my primary told me the gastro will do all that.  He really seemed to want to wash his hands of me quite frankly.  I am in the process of changing doctors, one who uses traditional and alternatives.  
As for mono, I think that's why my doc tested for it, but I had it as a kid, so some of the antibodies may be old.....I need to get hold of my chart b/c there is no way my doctor is going to compare results.  I've been tested a billion times due to crazy autoimmune responses to things i.e. ..tetanus booster, depo provera, and an IUD and mold.  One reaction was so horrible they thought I had Lupus and Fibromyalgia.  It took 2 years to resolve.  That is why I am petrified of the Hep C treatment, I will most likely get my butt kicked.

[spectda]

Your slightly elevated liver enzymes could definitely be from the mono, just don't let anyone prescribe you antibiotics while you have mono. My son was given antibiotics before they realized he had mono last month and he got the terrible itchy rash everywhere. His liver enzymes were triple the normal and he doesn't have hep c for sure. Do you know what your genotype is yet?

[panthyra]

So true....amazing how we communicate so differently.   My husband turns his anxiety into research....research...and more research.  When I was pregnant he inundated me with some many articles I thought my prego head would explode..lol.  I imagine he will approach this the same way...which is good once I sort it all out.  Now that I've chosen a Doctor, I feel so much better about moving forward.  Now just to find out which type....we need a bit of luck in this house.  

[Diane12855]

Many of us come here to vent. We have to get it out, and people here know how we feel, so it is safe. So feel free to let it fly anytime you feel the need.

Many of us have had babies while infected. I had 3, been infected at least 25 years, my kids are OK. I had C-sections. I do know of one person on here who found one of her children was infected, but not the others. Please don't feel guilty if your child is infected... you didn't know you had it, and it isn't your fault. It just happens some times, but the chances are slim.

I know many people on here worry about telling people about their hep c. Personally, I think the reaction is based on  the way you tell them. I told my fellow workers because they were concerned about my sudden change in personality... used to be quite the nut at work, now I'm quiet and tired all the time. I just told them,"I've got chronic hep c and the treatment takes 48 weeks, so I'm not going to be myself for a while." I didn't have one person mention drug use... they were concerned about the dangers of transmission, so I explained to them that they'd have to get my blood into their bloodstream, and there isn't any chance of that, so that was the end of it. I don't care what is said when I'm not there.

One last thing... my husband acted like it wasn't anything too when we first found out. I later found out that he was under the impression that if I talked about it, I would become more afraid and he was protecting me from the fear. Men tend to approach things differently than we do... if they don't like something they ignore it hoping it will go away... if we don't like something we need to talk about it until we figure out how we feel about it and what we can do about it. Don't try to change him... just come here with stuff you have to talk about. Every couple of days I tell my husband about something I have learned on here, and now that he sees that I'm not as afraid now that I understand more, he is more willing to talk. Your husband has the added concern of his own condition. You might do like I did, and just drop a little info about his condition every day or so and when he shows more interest, encourage him to do some research. I think doing research is empowering in many ways.

I hope things smooth out for you and your family-
Diane

[Bill1954]

Welcome to the discussion group. You’ll see an astonishingly large amount of acronyms used in here; they can be a little disconcerting at first. Here’s a guide to them; it’s also available in a box called ‘most viewed health pages’, in the right hand margin of this page:

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

Glad you found us, and good luck—

--Bill

[panthyra]

thanks..good to know....he was on my list...but I wasn't sure.  Hope he doesn't freak over the ldn..lol  

[panthyra]

I know transmission is low, I guess b/c I assume I had it when I gave birth to her....I'm paranoid  Her chances of MS went up too..  We were planning on another child....so now what?.  My husband and I were just joking that if we were dogs, we'd be neutered..lol..maybe not so funny.  I have no idea how long ago I got it.   I do not have a hepatologist in network but Penn has a few gastros that fellowed in the field and specialize in liver disease.  That may be my best option.  I just started LDN at 3 mgs tonight (my husband is on it for MS (along with Copaxone))  People may think it's crazy to do that right away, but it's available and safe so wth it may help with the Mono.  Toddlers have no time for sick mommies.  Also looking into some supplements...nothing crazy... figured it couldn't hurt.  Now I've got to quit smoking...ugh.
I am so glad to have this forum.  I don't feel so alone.  Now I understand all those feelings he didn't talk about since he was diagnosed and why he didn't say them (to me)

[copyman]

The other members have givin you some good info. the more you inform yourself about this disease the better you will feel. knowledge is power.

Try and see Dr Reddy at U of Penn. He is one of the best Hepatologist and treats many HCV patients. He is also involved with studies of new drugs.

Best of luck

[EyesofBlue55]

The best advice I can give you at this time is to READ<READ<READ.I was recently diagnosed also and I think we all go through the guilt thing and the being mad and the why me?But if you will get on this forum daily  and read the posts you can get pretty well educated on the disease .You will definatly learn that there are alot of people like ourselves that are going through this together.I have not started tx as of yet,just got in with a teaching dr(hepatologist)and hes trying to get me into a trial here in Atlanta in Sept.Ask questions and you WILL get the answers!!!When I do start tx this computer will probably be my best friend(besides water-youll learn about that!) Also NOBODY will judge you except the ones you tell.Ive know for 3 months that I have this terrible bug and the only people that know are my close family.They will NOT judge you.My best friend doesnt even know.Not now anyway.People will talk and its up to you how you will handle that.Good luck and will be watching for your posts.

[spectda]

It is shocking when you find out, especially because most of us know very little about HCV until we have to know. I received a lovely letter after applying for life insurance saying that I had a life threatening illness and they would not insure me, no mention of what it was. I had to call and threaten them to find out what specifically it was.

I've had HCV for thirty years, I found out about 12 years ago, When I looked up HCV on the internet at that time it seemed very very dismal, and treatment was limited to interferon only. Luckily you have this wonderful forum with well informed people to help you through it.
I am sorry that you have it and have to deal with it, and also deal with your husband's illness. It's will not seem as scary as you educate yourself and realize how long it takes (if ever) to get sick from this. I guess I don't know how long you've had it though.
Be well-Dave

[sunshines76]

I am sorry to hear about your husband's MS. You are probably extremely tired from having to deal with so many issues at once. But as far as your HCV concerned, try not to stress out too much about it. First of all, hep C is not a sentence, it's beatable. Second, your viral load is very low, so you should have pretty good chances clearing it even with current tx drugs. Do you know your genotype? Have you tested your child  - why do you think you could have given it to him? None of my kids have it, it's not that easy to catch this virus.
Try not to think about how you got it, try not to think of how others will react to your problem. Learn more about it. It's good you came to this forum, you will find some good information here, and support too. Very few people understand what we have to go through, but people on this forum will support you, because we are all going through the same shock of being diagnosed first, and then learning to cope with it, and then going through treatment.
It's good they finally figured out that you've got hep C - now you can do something about it. Just imagine how many infected people don't get tested and have no idea what's going on.
Welcome to this community. I have two more months of tx, and can assure you, not everyone has it tough - my treatment experience has been pretty easy so far.

[panthyra]

A hepatologist sounds like a good idea, my Dr tried to refer me to a gastro, but I told him I need to let it all sink in and figure out my options.   I don't know what type I have yet, but that will come with the hepotologist.  Luckily I live near U of Penn and Thomas Jefferson.
Thank you for allowing my rant...it felt better just saying (typing) it out loud.

[portann]

Hi Panthyra,

I have to get to bed now but quickly want to say your feelings are typical of most of us when initially diagnosed.

Take your time, adjust to the double whammy as best you can by learning all you can about both diseases. Now's the time to look forward and make a plan to beat this.

Gotta go now but make sure to look for a HEPATOLOGIST, if possible, and at a teaching hospital. That will make everything fit into place more smoothly.

Susan

[Magnum]

There is always shock aqnd anger when you first find out, but it's nothing near the end of the world. It appears your condition is not that bad judging from your ALT/AST readings and viral load. I'm not a doctor, but I advise you to see a Hepatologist. He specializes only in liver problems complicated by Hepatitis. A gastro is also very useful in helping you treat.

You're actually pretty lucky that soon the Protease Inhibitors are coming out. These drugs, in combination with the regular treatment of Interferon and Ribavirin, are going to amplify the treatment and give you a better chance of clearing. Ask your Hepatologist and Gastro if you can wait.

In my way of thinking, if you can wait, why take a chance with a possible clearance of the virus with the traditional treatment, when in combination with the new drugs, the chances are much better at clearing. Otherwise, it's up to you... Best of luck...

Magnum