Just Getting Group Support

[Spoiledrotten25]

I am new to blogging on my hepc condition and scared. I have not told my husband or kids about my fears but I do periodically talk to a close friend. I have told my husband about my hep , not my kids. I will talk to the kids which are 21 and 23 later when I feel I have to. I 'm glad I found your forum. It helps.  


My alphafeta protein level jumped from 9 to 14 and alts etc are elevated slightly.Ultra sound says all is ok.
Can anyone tell me the first symptoms they felt. I know it varies from person to person.

[nygirl7]

I had no symptoms or any idea I had the disease and by the time I got my biopsy a month later found out  I was already at stage 3.  Ultrasound will show you whether you have tumors or cancer but not the level of fibrosis you have. Since this is generally a very slowly progressing disease this will most likely provide you some peace of mind - just make sure you are living a liver healthy lifestyle in the meantime and find a GOOD knowledgable reputable doctor but mostly educate yourself. Ask questions. GEt copies of all your test results and learn how to read them (the folks in here will show you which are the important things).

There are many many of us in here who have been cured indeed.  It is not a death sentence just make sure you follow the steps and you will be fine.

Good luck.

[Mary4now]

Hi, have you had a biopsy? do you know your genotype? these are all tests that will help you decide how to move forward.
I have had no symptoms that I can put my finger on and I think I've had it for 40 yrs.
Remember this is a blood to blood contagen disease ( i think I made a new word ) so its not that easy to get.  I was sooo scared at first, and the more I found out about it especially through this site, the better I felt about it.  I then found out some people I have known have had it.  The first thing my doctor said is "this is not a death sentence" it is a slow progressing disease and there is treatment for it.  most people live with it and die from something else.  You must change some things especially alcohol ( do not drink ), eat a diet that does not tax the liver, fried, oily, greasy,bad.
Keep reading the posts on this site,
There are still a lot of people walking around with this disease and do not even know it, knowing has changed my life.  I still live with some fear, but have come to realize that no one knows what the next day holds and its important to be proactive in your own way and just plain dont take life for granted.  
What do you think your husband would do if he knew?  has he been supportive? Why have you decided not to tell him?  
please keep us posted, dont worry, be kind to yourself and you can trust us here.
Love,
Mary

[IMstacie]

just to let you, I had no symptoms to speak of before "I learned" I had hcv, and every symptom in the book, once I found out I had it.  And, then of course, after I learned all about it and calmed down, I realized I truly didn't have any symptoms - it was all nerves.

[Diane12855]

I have found that lots of people have had some depression and fatigue when they first found out. My energy levels had been dropping off for over a year and I had been infected for about 25 years when I found out.

I wouldn't depend on that ultra sound as an indicator or your liver condition. I had them every year for 8 years before I knew about the HCV because of an hemangioma that they were keeping their eye on, and they never noticed anything, but when I got my biopsy after my diagnosis I found out I was Stage 2 Grade 2.

Make sure you go to a doctor that has treated lots of people with HCV because there are lots of doctors out there who think they know about this virus but they haven't learned anything new since med school. Remember... they didn't even know how to find it in the blood before 1992, so most older doctors... older than 40 that is... didn't learn much at med school.

Diane

[R Glass]

I think it is very wise to wait before you have your Sit Down with your kids. You want to have all of your facts and emotions together.

If anyone gets the “How Not to Do It Award,” it should be me. It really wasn’t my fault. I knew nothing about HCV and my Dr. didn’t know much more. When he called me with the news, he told me I had Hepatitis C, it could be treated but there is no cure. He referred me to a Hepetologist but it was about 8 weeks before I could get an appointment. I couldn’t wait that long and found a Gastro.

Since I had not yet found this forum and had no one to talk to, I searched the Internet. That was a mistake because in that state of mind, all I could see was the negative. I gathered all the family together and told them everything I knew, which was I had Hepatitis C, it could be treated but there is no cure. We all cried and walked around for weeks thinking I was dying.
As for symptoms, I had night sweats and fatigue.

[eureka254]

Being scared is a very natural response, but the fact that you are confronting your fears is an important first step.  Educating yourself about your condition will go a long way, and hopefully reading this forum will help you in the journey ahead -- welcome to the group.

I would encourage you to share your fears here, as well as with your husband. Coming from the perspective of someone whose spouse has hep c, I would much rather know what he's going through than to be left in the dark, and as Susan pointed out above, it always helps any marriage to foster more understanding and communication, rather than less.

As far as symptoms go, some people have them, but many people don't.  My husband probably had hep c for four decades, and never remembers having any symptoms.  Also, it's pretty normal for liver enzymes and AFP to fluctuate with active hep c.  What is more important information is the Stage of liver damage (measured from 0-4), which can only be accurately determined by liver biopsy (which sounds much worse than it is).

Hopefully you have access to care by a good gastroenterologist or hepatologist who can partner with you to help you understand hep c and overcome your fears.  

[Marcia2202]

Welcome to the forum.

I find it wise that you have chosen not to speak to your children about it at this moment. As you are still afraid yourself, you would just worry them.

Read as much as you can, inform yourself about the disease and treatment. Knowledge is power. Your fears will subside and then you will be ready to tell your kids.

I find following site very informative.   http://www.hepctrust.org.uk

[Susan_1a_CC]

Welcome to the forum.  How long have you known that you have hep C?  Do you have a plan of action or are you still in the "I have what!" stage?  

My first and only symptoms were intermittent upper right quadrant abdominal pain.  

While you know your family best I would ask you to consider how you might feel if your husband had deep fears that he choose not to share with you.  Although he might not understand completely what it is like to have hep C, he may very well have fears of his own around your illness.  What I am trying to say is that something of this nature can actually deepen your communication with one another and to just give some thought to that.  (Not that you don't have plenty on your mind but, people do like to feel needed and useful, and you can use all of the moral support you can put in place.)  Wishing you answers to your questions, and a good medical team on your side.
Susan

[sunshines76]

You are absolutely right about symptoms varying from person to person. I personally didn't have ANY symptoms and was totally shocked to be diagnosed with Hep C. The first week after being diagnosed was a blur for me. My husband and I told basically everyone in the family looking for some answers and getting my immediate family members tested just in case. Then I finally pulled myself together and started educating myself on HCV. It took me 2 years to come to the final decision to go through treatment. And I am glad I did it. 3 months post-tx - UND. My 6 months post-tx PCRs are due in February, and I am looking forward to the sweet outcome of this whole journey,

It's good to see you on this forum. This is the right place to hang out - lots of great people here are ready to help you sharing their own experiences. Stay positive and Happy New Year! Welcome to the community :)