How does one cope when newly diagnosed with HCV?

[Blessed58]

I am very newly diagnosed with HCV and reason for diagnosis was because I feel so bad all the time. The PA at my physicians office started a battery of blood tests and found it. I have my first appt. with hepatologist next week and am feeling scared, lonely, and physically ill. Since I am new to this, I have lots of questions and don't know where to turn for answers. Is it normal to feel so very bad all the time? I can tell that my liver is enlarged just by looking at it, how bad is that? I have no idea when or how I got this, but because I am a Christian now, I know that the sins of my youth are forgiven. I don't know how to tell my loved ones or friends. Is this a death sentence? The treatment options scare me too, it sounds like they are going to make me feel worse! Not sure I can stand that. Any advice, tips, or just shared experience would be appreciated.

[skersj]

It has been 11 months since I was diagnosed. I still remember how scared and alone I felt and how much I dreaded telling my husband and child and worrying whether they were also infected. But now I have been on treatment 8 months and still have 9 more months to go. I just take it 1 day at a time and try not to worry about tomorrow. Just deal with it as it comes. You are stronger than you know and you have your faith.

[jonney4141]

I know exactly how you feel, and having to tell family. I was very scared and felt dirty or that I was being punished for my past, but do know that God had forgiven me, and there is a reason for everything. Come on to this site and ask questions, many people here will give you good advice, i did not know anything about this disease either, so my best bet was to learn all i can about it, i am still learning but when i have questions or am confused i can come here for help, or for someone to just listen to me, it helps......... hope to hear from you more often. I had to put my trust in the Lord..............................

[Isobella]

We all remember those first days.  Not the highlight of my life for sure.  For me, I told no one initially...except my husband.  I was panicked and didn't want to present this to others when I was scared and uninformed.

I stayed on line constantly researching.  Finding this website was like hitting the jackpot.  As I became more educated in my disease, I was able to share my diagnosis with a few trusted family members and friends.  I felt it better to present the information calmly to my family rather than show them my total initial panic.  

The more I learned, the more confident I became in making treatment decisions.  Finding a good hepatologist is key.  Getting a biopsy is very important to determine damage, if any.  I have had hepc for approx 30-40 years and have no liver damage...stage1/grade 0.  I am currently in week 39 of 48 of treatment and still working and going to school part time.  It's not a bunch of giggles, but I am finding it doable.

Request copies of all lab results and visits and start a file.  Read through this forum, the archives and the expert forum.  Read, read, read.  Ask questions....many good people here can help you.  Have a list of questions ready for your hepatologist.  Start being kind to your liver by eating healthy, limiting exposure to toxins, excercising.

You will hear often, most people die with this disease, rather than from it.  

The same God that gives the forgiveness we all cling to is the same God that gives us the strength to fight this.

Good luck to you.  Please keep us posted.

Isobella

[Marc1955]

The first thing to understand about HCV is that it moves slowly. It is a complicated illness and there is a great deal to learn about your own care and treatment options. Although it's natural to feel a sense of urgency, you want to be patient with yourself. It will take time to have all the necessary tests and meet with all the necessary doctors. So be patient. It could easily take 6-9 months to get a sense of your situation.

You also need to decide how many people to tell about your illness. Most folks I think choose to limit the information to immediate family. Your friends don't necessarily need to know. Obviously, this decision is up to you. Illness is a personal matter. It is not everybody's business.

One small additional comment – although you don't mean it that way, how do you think you make someone feel who is not Christian when you say what you said? You're forgiven because you're Christian? What about folks who are not Christian? There are people who post on this site from around the world – many Muslims, Jews, Hindus etc. You might be a little more understanding in this regard in the future.

Good luck! Be patient. It will all come into focus after a while.

[jdwithhcv]

It does not really matter how you got Hep C.  The question before you is what to do about it.  I suggest you get a biopsy, once you know the condition of your liver you can make an informed decision about treatment.

This is not a place to discuss the condition of your soul, it is a place to discuss Hep C and treatment for Hep C.  Clearly your liver has not forgiven the "sins" of your youth.

[newleaf09]

My experience agrees with Isobella's.  I told my husband right away but it took me two weeks to tell my kids.  I reasearched like crazy, started treatment right away (but had bad biopsy results), and keep a file with all of my bloodwork results in it.

How you got the disease is completely irrelevant.  Youthful foolishness, medical treatment before disposable instruments became popular. It has absolutely no bearing on anything.  It is much easier to tell employers that you have liver disease and strangers that you are taking serious medications that make you tired.  They are satisfied with that.  There is a stigma attached to Hepatitis C and most people regret broadcasting the info to non-family.

One foot in front of the other.  It will take a few months for you to get over the shock, but go ahead and start the medical work-up to help you make treament decisions (whether you need to treat right away or can safely delay).  None of us likes treatment but it is bearable.

[portann]

Blessed:  "I feel so bad all the time. The PA at my physicians office started a battery of blood tests and found it."

Feeling bad could be caused by HCV but could be caused by something else, possibly undiagnosed. I've had Hepatitis C for over forty years and never had symptoms. Many people do report symptoms but feeling "bad all the time" needs serious overall attention to other potential issues. Your appointment with a hepatologist will get the ball rolling.

The important thing is you have an appointment with the hepatologist next week, which is very quick, considering you were only recently diagnosed. I never heard of hepatologists until recently and it took  me some time to even learn how to spell the word. So you're lucky to fast-track an appointment with THE specialist who will be able to help you make a sound decision about HCV.
________________________________________________________________________

Blessed: "I can tell that my liver is enlarged just by looking at it, how bad is that?"

Is this something that your doctor also observed or is it you that noticed?
_________________________________________________________________________

Blessed: "...am feeling scared, lonely, and physically ill."

Any new diagnosis feels scary and the best way to tackle the fear is to learn more about it. This is a great forum to do that. And the forum does wonders for loneliness.

Good luck at your appointment with the hepatologist next week. You'll be in good hands.

[Blessed58]

First, let me say thank you. I very much appreciate your taking the time to respond to my question.

I apologize to any who were offended by my reference to my faith. It certainly was not meant to do that.

Thank you again for the kind words, the encouragement, and the advice.

[GSDgirl]

After I realized that the diagnosis was not a death sentance, yea that was my first reaction, my attitude was NOW HOW DO I GET THIS OUT OF ME!!!  I had the attitude that I would do what ever it took.  I did the treatment and it wasn't a cakewalk but is was doable.  It also took me a little while to get back to myself.  I didn't need any rescue drugs, it didn't kill my thyroid, I can't even remember getting riba rash, I got itchy but it was not real bad.

Don't apologize for believing in a higher power and calling on that power.

I also felt bad before diagnosis, I can't remember how many times I had the "flu" 2 years prior & every time the grandkids came over I got their colds.  If I got stressed out I would get the flu symptoms.  I am just glad it is over.  Good Luck!!

Denise

[Blessed58]

Thank you both for responding with kindness. I appreciate the encouragement and compassion very much and the time you took to comment.

Please understand that I am not apologizing for my belief, or for my faith, only that it offends some. I believe in God and I believe that His plan will prevail, whatever that is. I know that sickness and death are part of this life, and while it's true that it doesn't matter how I got the disease, it's also true that it is going to continue to be a problem for lots of people if one can walk around with it for years and not even know they have it. I also believe that the peace and love of Jesus Christ will help me through it.

Yes, the way I feel now is something like the flu. Shaky, weak, body aches, etc. and this has happened a few times since last fall (I actually thought I had RA and asked for blood to be run up for that). But I have felt pretty bad for days and there doesn't seem to be much relief. My doctor says 2000mg or less per day of Tylenol (which I have been living on for years), so it's hard to squelch the symptoms of sickness. Stress seems to be a demon to this thing. Also, when I get really tired from working so hard, I start feeling sick. I will just have to make some adjustments, as I know all of you have.

I have known now for five days and the initial shock is still in control of my emotions, but I am trying to learn as much as possible and I know that will help. I will continue to pray about it, for myself and all others with it (don't care if that offends anyone) and also for those who get it in the future. New drugs and treatments are on the horizon, and I will pray that they are better in effectiveness, with fewer side effects than the ones available now. Until then, I will do what I can. One day at a time.

Thank you again.

[fretboard]

How you got infected doesn't really matter at this point and it is never good to beat yourself up for past mistakes.  We did what we did and life goes on.  Consider yourself lucky because either way you look at it, it could be worse.  

It's time to find out what your viral load is and get a biopsy.  Then you can decide what you're gonna do as far as getting rid of it and deal with having it.  Just read around for awhile and educate yourself the best you can because knowledge is power.  good luck    

[merryBe]

there are many emotions you will go through in the process of coming to acceptance of this disease. Regardless of one having faith or not, each person has to process a whole host of thoughts, actions, reactions, and emotions just as if a family member might die.

Your life might be cut short by this disease, it doesn't take long for that fact to become apparent to folks....it might not be, but it might. There is much good news in the treatments available now, but they don't always work sad to say.
In any case, this is the kind on news that is first overwhelming and then leads people down a road which is frought with potholes, much as the pilgrim's in John Bunyan's Pilgrim's Progress, they had many a snare and some mirky areas to get past, so will anyone diagnosed with this illness.

I like to remind myself that being told YOU may expire is no different than being told a loved one may expires. The same process of grief occurs in both.

Ergo I suggest you consider the stages of grief, in order to better recognize how you are processing and dealing with your disease.
http://www.memorialhospital.org/library/general/stress-THE-3.html

after coming to grips with the reality, it is better to take a proactive and informed approach to your disease and treatment. People who do this tend to do better with treatment and become more highly motivated to overcome their obstacles than those who stay in the dark as to understanding this illness, and the current state of treatments.

While I understand and agree with your concepts concerning forgiveness, I also think those trust in the Lord must also give an account for what we have done in our flesh....
not necessarily what we did BEfore coming to Christ, for the christian this is a key, but certainly we are held to a higher standard AFTER coming to Christ in that we are taught "know ye not, that your body is the temple of the Holy Spirit" "shall you enjoin Christ to Belial" and so on.
Ergo, as christians I think it behoves and becomes incumbant upon us to be proactive about regaining our health in the sense of not being fearful but pressing on with whatever burden we bear, and trying to be a light to others whether we are healed or not.
We also need to be careful to educate and warn those we might infect. That standard may not mean you have to tell everyone in your circle, but certainly within your own family there are some precautions that become imperative as a form of caring and love.
The same is true when it comes to dealing with health and dental workers, they have a right to know if you have this, to better protect themselves, our rule as believers must always be "do unto others as we would like them to do unto us".

mb