September 10, 2020
I'm just wanting to find out if the forum is still active. I posted with no response for weeks. I've not told anyone but my husband and now a friend from out of state that I just seem to rarely hear from. I really need support and I don't know where else to look.
Still feeling so scared, Savannah
September 10, 2020
Our apologies that no one got back to your post from the 23rd. I just looked that over and I want you to know that we're here with you for support. We know that a hepatitis diagnosis can be scary and leave one with a lot of questions about what's next. We're thankful that you have a supportive husband in your corner to help you through this. Fortunately the virus is curable.
I want to pass along the number for Help4Hep, a free peer counseling service for people living with hepatitis C. Their staff is knowledgable with personal experience with the virus. They can be reached at 877-435-7443 from 9am-9pm EST.
Please let us know what questions you have and we'll support you as best we can.
Warmly, Matt (Team Member)
September 11, 2020
Thanks for sharing your situation in more detail with us–I want to say that takes tremendous courage. You raise a few things I want to touch on.
Transmission via household items is considered low, though hepatitis C is transmitted when infected blood from one person enters the blood stream of another. I mention that as your daughter has used your razors, that could be a cause for transmission concern given cuts and blood. We can’t advise you on whether or not to tell your family–that is your decision. If you decide to tell them, I hope you are well received and have support–the virus carries an unjust stigma. I have not had hepatitis C and am a community manager for this community site.
Help4Hep has assisted people in similar circumstances after a diagnosis and I encourage you to call them. They can give you advice about next steps in getting treated.
Getting diagnosed with this virus can be frustrating and scary, but with time and persistence, you will hopefully find your way on the road to getting treated!
Matt (Team Member)
September 12, 2020
Matt, thank you again. I will give them a call. Getting more info would probably give me some calm. All the not knowing is probably scarier. I don't know why I thought you had it and had been successfully treated. I read several stories here and guess I got mixed up. I'm sorry. I really appreciate your help and encouragement. It was so nice to get another response from you. It is very hard dealing with something and not having anyone to talk about it with. I don't feel that I can tell my family but I do intend to make that phone call. I hope you're having a good weekend! Smiles, Savi
September 10, 2020
I Savannah I totally know how you feel. I was diagnosed 15 years ago and I have dreaded to get treatment up until now and I just went to get my labs and ultrasound done a couple of weeks ago and I had fatty liver and my labs read high AST and ALT just had my appointment today and they are saying that I have to take 8 weeks of mavyret. I’m just waiting on my insurance to approve, I recommend the sooner the better you get treatment. Praying that everything goes well with you keep us posted on what’s going on!
September 23, 2020
Hi, Savannah, sorry I haven’t responded sooner! Hope you are doing well. Life has been hectic for me here lately. I also have a daughter that I have to homeschool. So I totally relate to your concern about being able to do normal daily routine stuff during treatment also. I can also relate to having high liver enzymes as well. Because every time i had blood work done in the past 15 years my liver enzymes would read super high. The most it has ever read was 5,500,000 and that was a year ago and my current one went down to 4,500,000 which is still high and my geno type is 3a which is a hard one to treat, which is why i waited until now to get treated. My dr told me not to worry about the enzymes. Also with kids getting it the chances are very low. I have had my daughter tested and she don’t have it. Just got approved for Mavyrett a week ago and I just got a call today that I will be getting it tomorrow. Which I am excited and I have a lot of anxiety at the same time about it as well. Because after I found out I will be starting treatment I just got a call that my moms kidney cancer has came back and they are saying that it has spread in other parts of her body this time and they are taking about hospice or dialysis and my mother in law is in the hospital with some health issues as well and my monthly visitor came at the same time. So I’m full of mixed emotions and out of whack hormones right now. So please excuse my grammar or if something don’t make sense right now. Keep us posted on what’s going on. I will keep you in my prayers !! Hope all is well with you!! God bless!!
September 23, 2020
Thank you Susan, Today I just found out my medicine for treatment will be ready tomorrow. At the same time I found that out I found out that my moms kidney cancer has came back and this time it has spread in other parts of her organs. So they are talking like they may do dialysis or hospice. To top it off she lives in another state and we are 1000 miles apart. Also I’m not going to lie I have been experiencing treatment anxiety on top of all of this!!! Because I know quite a few people dealing with life threatening issues right now and it’s really scaring me. Susan I will keep you posted on how treatment is going.
September 14, 2020
Hi Savannah. I apologize that you had to wait so long for a response. Please do not beat yourself up for making a mistake four years ago. You should be so proud of yourself that you recognized the mistake and fixed it. I am sure proud of you.
Matt gave you great information. I would like to reiterate that the risk to family members is extremely low. I was diagnosed in 1991, but got the disease in 1966 after a horrible automobile accident. My children were born in 1967 and 1970. We did not know I had it so no precautions were ever taken. Neither my girls, nor my husband became infected. And I am sure that they used my razor and possibly even a toothbrush by mistake. Make sure your daughter has her own supply so she doesn’t need to take your things, especially if you don’t want to tell her.
The other thing I want to say is that it would be very very odd if you have more than a little bit of liver damage seeing as you have been infected for such a short time.
Good luck with treatment. You should be cured quickly.
September 15, 2020
Susan, thank you so much for your response. I literally took a deep long excel after reading it. I feel like I am breathing out some of the stress I've been carrying inside the last few weeks. Your words speak right to my heart. I have worried about my liver because my liver enzymes have been up for several months and I didn't know why. I'm now hopeful that there's no significant damage.
Will you share about your treatment? Do you have any lasting struggles from being infected for so long? I pray that you don't and that you are completely free of it.
I really really really don't want my girls to have it and I don't want to tell them I have it but I feel like I need to get them tested. Two of my 4 are still at home tho the oldest that's still at home is a senior and leaves for college this coming summer. The oldest two were "grown and gone" before I made a terrible mistake. Only the older one at home has borrowed my razors. She's got plenty of her own.. a pack of them and yet she would often grab mine out of convenience of it being in the shower. I now keep it under the bathroom sink out of sight and put away safely. I'm trying to trust God that He's got this, whatever the outcome.
I took a big step today. It will sound silly but I called my dr office and got in for tomorrow afternoon to have my blood work done. I've been putting it off since seeing the GI DR. I know my regular dr and have not wanted to tell her. Well tomorrow afternoon I will be one step closer to finding out the gene and then what medicine the DR will be submitting for insurance approval. I'm worried about side effects of the treatment. My oldest at home is a senior and it's a busy year for her and I homeschool my youngest so I will be going in many different directions and I am hoping this doesn't slow me down. I know I'll push through whatever I must.
Thank you for saying you're proud of me. I never feel proud of me for getting help because I never should have messed up in the first place. It was nice reading your words. Maybe I need to get myself out of such a negative focus lately! lol 😀
Thank you again for your response. I am SO HAPPY to have received it!