Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
Hello everyone, new member cambie here, hope you can stand a long winded post as an introduction. I have been lurking for two weeks since my Dr. told me that I tested positive for antibodies to Hep C. I was beyond disbelief and have been researching for hours daily as I am a person who feels better armed with knowledge. The first day I convinced myself that it was a false positive but, woke up on the second day knowing in my heart that I have Hep C and possibly have had it for 20 to 30 years, as i could never take pressure on my stomach and lacked energy from time to time. But, the abundance of my symptoms are from the past two years or so and make me wonder if I just contracted it in the last few years or I am failing quickly. My symptoms are as follows, digestive issues, gall bladder removal 20 months ago, which lead to a case of what I think/thought is an ongoing case of Costocondhritis, and may be, because of right side back pain that wraps around to my stomach and makes it impossible to wear a bra, but who knows as every symptom has a sinister tone to it now. Also feeling a general malaise with sporadic anxiety and a sense of being disoriented or overwhelmed with too much stimulus while driving and shopping in town that lasted for months then disappeared. Twinges of depression. Thyroid went from hypo to hyper then back to hypo in a 3 year span. Abdominal fullness and occaisional pain and bloat that I thought might be gall bladder related as removal has its own issues on bowels etc. Dry eyes, mouth. Fatigued and muscle aches, although much improved with proper thyroid dosage. Zaps and myofascial pain, chills, night sweats which I thought were menopausal symptoms but am not sure about now. I may have been protected by the estrogen factor for a while and now all hell is breaking loose. Had an ultrasound and CT scan last year that didn't show anything other than a fatty liver. Mind you no one was looking specifically at gaging liver damage at that time. Don't want to bore anyone any further with my miseries but, i am curious as to what others have experienced symptom wise and how advanced their conditions are accordingly.
I want to be able to focus on treatment and recovery but without knowing the full scope of my condition I am stuck in an abyss of fear. Don't want to come out of the gate as a wimp or self involved and have been managing my anxiety and stress quite well in the last 10 days (so I think) as I have not been able to share this with my husband at this time, as he is going through a very stressful time at the moment and when i consider his health as of late, i fear he has it too, but i need to get a definitive diagnosis before i share this with him and even after i get the diagnosis, it will be a couple of weeks before i can tell him because of the stressful situation he is in at the moment and I want to protect him as much as i can from the shock and the fear until a time when he can better cope with it, which should be in a couple of weeks. Anyway, I have come off of the rails a bit tonight and am having more than a little anxiety thinking about the future or possible lack of. Lots of dark and terrible thoughts. I have been hanging on to Loplop's post where he said he copes by thinking the following.... breathe you are alive, breathe, you are on the Internet and it does help to centre me in the moment.
Yes, breathe, I am alive and on the Internet. :)
Although terribly scared, I am very heartened by the humour and courage that I see on this site and impressed by the wisdom and caring. I will return with my numbers when I get them, and as I start my journey, I want to say thank you in advance for your fellowship.
I want to be able to focus on treatment and recovery but without knowing the full scope of my condition I am stuck in an abyss of fear. Don't want to come out of the gate as a wimp or self involved and have been managing my anxiety and stress quite well in the last 10 days (so I think) as I have not been able to share this with my husband at this time, as he is going through a very stressful time at the moment and when i consider his health as of late, i fear he has it too, but i need to get a definitive diagnosis before i share this with him and even after i get the diagnosis, it will be a couple of weeks before i can tell him because of the stressful situation he is in at the moment and I want to protect him as much as i can from the shock and the fear until a time when he can better cope with it, which should be in a couple of weeks. Anyway, I have come off of the rails a bit tonight and am having more than a little anxiety thinking about the future or possible lack of. Lots of dark and terrible thoughts. I have been hanging on to Loplop's post where he said he copes by thinking the following.... breathe you are alive, breathe, you are on the Internet and it does help to centre me in the moment.
Yes, breathe, I am alive and on the Internet. :)
Although terribly scared, I am very heartened by the humour and courage that I see on this site and impressed by the wisdom and caring. I will return with my numbers when I get them, and as I start my journey, I want to say thank you in advance for your fellowship.
Once you have a firm diagnosis & know your geno type, find a good GI, infectious disease, or liver dr so you can explore treatment options or whether your liver can wait.
It doesn't matter how long you've had this or how you may have acquired it.
Don't feel self-conscious about your fears and anxieties - we all have been there and understand...that's what we're all here for, to support each other.
Maybe I should mention at the outset that just having antibodies doesn't mean you have chronic Hepatitis C. I wouldn't get your hopes up about that, but it's something to keep in mind until you've been told more. There are probably people more knowledgeable about this point on the forum who could chime in about this.
Anyway, I can't address all the issues you raised, but I can tell you that, while Hepatitis C can cause a variety of extra-hepatic troubles - troubles outside the liver - it is also VERY easy to start seeing Hep C behind everything after your diagnosis. I know it's easier to say than do, but try not to get distracted by all that stuff at the moment, because you need to focus on just a few things now.
Like you said - breathe first. You have time to think about these things.
You should definitely see a specialist about this - a hepatologist, or a gastroenterologist that has expertise in hep C. The doctor's focus will be determining how damaged your liver is. A biopsy may be necessary, but some doctors start with a blood test called
Fibrosure, along with MRI, MRE, ultrasound, and things like that.
Once the damage is determined, you will be faced with the question that gets asked a lot these days - should I treat now or should I wait? The reason people are considering waiting is that there are drugs coming to market in the next 2 years or so that will not have the sometimes very difficult side effects that the current drugs for treatment have. If your damage is mild to moderate, you can probably wait. If it is very severe, you may have to start treatment soon. There is a gray area where people aren't sure what to do...but it seems that these days many people with somewhat severe damage are waiting. I think you'll be just fine and you'll get through this, but you have to really take care of yourself now. Eat very healthy and lay off the alcohol. Get help if that's a difficult thing - and ask for help about other stuff too. This is a time in your life where you can't be embarrassed about asking for help. I was never the kind of guy to ask for help, but I threw false pride to the wind when I got this virus, and I was glad I did - it's been a really touching experience to see the good in people as they've responded.
Which brings me to your husband. You know the dynamic in the marriage, so I can't offer much advice...but I'll say that sometimes if people are suffering with their own problems, and down about them, hearing about a loved one's problems can kind of snap them out of it as they rise to the occasion to GIVE support as well as receive it. Just something I've observed.
Well...best of luck.
You've found a good place for support, but sorry you had go come here. We've all been in your shoes, and it is no fun.
Slideguitar gave you some great advice. Just remember being tested positive for the antibodies is NOT a medical emergency. You will get more information once you have your follow up appointments. The wait will seem to be forever, but use that time to keep educating yourself. Make sure to write down questions you want to ask your doctor, and take notes. A lot of what you hear will seem like a foreign language at first, so don't be afraid to come back and ask questions.
Good luck.
Bob
know each one personally. Please do your research & find out
your exact situation. You have found a good place to hang out!!
Ozzie
Great support here, just remember we are all here for each other. Keep us posted on you progress.
Sending
I think alot of what you are going thru is the same exact thing that all of us went thru when we first found out. For me (personal choice) keeping it bottled up only ate away at me making everything worse.
MY TWO CENTS: You need to sit down and talk to your husband. As Slide stated, we don't know the dynamic of the marriage, if the marriage is strong the two of you will survive. It sounds as if both need the love and support of the other right now and if you are keeping it a secret, your anxiety level is possibly so high that you are not capable of being supportive of him and his situation.
With that said, it is a personal decision and I just want you to have food for thought.
Good luck in your decision and know that we are here for you.
Clay
I do the calming selftalk too with anxiety but I am getting less of it (touch wood), I repeat Its gonna be ok... I am ok and just get through the moment. I have come to love this group, the honesty, everyone here has contributed apart of themselves to the new me whether they know it or not and I feel stronger. OMG I am going on, I better stop now sorry lol, good luck with your test results.. :-)
I guess I am ahead of myself without actually having the results of my HCV/RNA and HCV/PCR tests but can't help operate on the premise that I have the virus although I pray to be one of the lucky ones that eradicate it on their own.
Thanks for the great info Slide and for the thoughtful advice ClaytonB. I am still keeping this from my husband for the time being but, was able to unburden myself to a good friend yesterday who I know has the utmost integrity and will keep this to herself and to much to my surprise she said her son cleared Hep C in 2003. She didn't know his genotype or remember how long he treated for, as he was on his own and lived in another city at that time, and she only knew that one of the drugs was interferon. She did say that he told her at the time that he was told he'd have a 30% chance of clearing the virus. She said he gets tested every 6 months and is still clear.
Thanks for the welcome messages Ptriss, shadowdance, Marilyn, Mr.OSO, Blanche1, OZZITA, debbear.
Thanks for the symptom feedback from the ladies, barbbey, NZmomoof3, and packedsand. Sounds like we are going through similar versions of the same things. So encouraging to hear that some of your symptoms have disappeared with treatment Barbbey and NZmomof3. How wonderful!
I am thankful that I have been pretty much a non drinker for over 20 years, I never had an issue with drink(or drugs for that matter) and while I had a bit of fun in my 20's and early 30's I could take it or leave it. I might have 3-4 drinks a year, maybe a beer at a wedding, barbecue or a mixed drink at Christmas, just to be social. Now I will drink cranberry juice with a twist of lime and just look social :)
In an effort to feel better, I eliminated wheat, caffeine, processed foods, and dairy from my diet 6 months ago. Will probably reincorporate green tea though for its liver benefits. So, I try to live healthy. I also just started doing affirmations but, have stumbled in the last two weeks as I couldn't get my mind off of my impending bloodwork results. I plan to make some placards tomorrow and put them in strategic places to remind me to focus and I continue to remind myself to "breathe".
Anyway, thanks again and I will keep you posted as to my progress and will follow yours. Blessings to you all.
Cambie