Hep C Discussion Forum

Cinnamon Girl · Guru

RE: New to everything Hep C

Flower Child · Member

Thank you all so much!

Mike, most everything you said is similar to my friend from the past year, two years. She mentioned her immune system to me on several occasions but nothing pointed to Hep C in my little research. She is a brilliant lady. Yet one struggle also includes sitting down to read info. at length and retain it, so I will read part of your story to her. It may shed some light for her in ways she'd have never believed coming from me or a science journal (personal accounts weigh higher).

Jill, the care taker link gave incredible insight. I'm not even care taking but have literally gone through most of it already. I have been walking through everything now to be prepared. Yes, even have low fever and abdominal pain I falsely chalked up as my imagination. No sleep. Lost ten pounds. Not complaining but am going to the clinic to get an antibiotic. Thanks for that link!

Bubble, I have great admiration for everyone who has dealt with this over the years. One of the reasons I was so frightened is because the only story I was familiar with before now is a friend of hers who needed a liver transplant and it couldn't happen in time for her. It was overwhelming. This is partially what made me collapse because it's only thing I knew. Also, the greatest misconception I had is that Hep C is caused by blood transfusions and needles.

Nirmalee, the silent symptoms are speaking so loud and clear that I am floored. She is still dealing with the "fog" so I am unsure how aware she is yet. And if she is aware, I still wonder how possible it is to be fully engaged while the virus is still in place before treatment. She's brilliant, her mental faculties are all in tact. But stress and what could be labeled as "depression" have played a larger role than I imagined.

Thanks to everyone! I am coping better and gathering up information as best possible. Not sure what or when the treatments will begin but am in awe of the groundbreaking progress. Thanks again, Rebecca

dragonfly · Senior Member

Hi Rebecca, welcome! All symptoms are silent until you get a diagnosis and then it all makes sense. I am geno 3a also and it took a long time for me to get diagnosed and finally get the right treatment but when I did 'woot' as Tig would say. Sometimes it takes time to get an ultrasound but it has no bearing on diagnosis or treatment (in the UK). They are just looking for obvious changes in the liver, signs of portal hypertension and fluid on the belly. It is an extra tool. If there are concerns an MRI and/or a biopsy would be the next step. Please don't worry, what is there has been there for a while and can be controlled by drugs, good diet and awareness. I hope this helps,

Nirmalee xxx

bubble · Senior Member

Great letter Mike, Hi Rebecca! I just want to say to you - and to all people who have never been treated before - I personnaly feel that today's treatment is going to slay the dragon very quickly, thus reducing severe damage to your liver. Gone are the dark day's of low SVR rates. Us formers, you have to remember have probably gone through treatment as much as 3 times in the course of 10 years. I say to your friend todays HCV treatments will reduce her chance of severe damage 10x. She is looking at only an average of 12 weeks tx! Time is on your side. I am noticing alot of people on this forum who have low indications of inflamation and are starting tx! Their chances of success are very, very high vs. the old days. Please, like Mike, a positive attitude is key. Your friend is going to have success. Yes, the waiting is "The Hardest Part" Peace.

MechanicMike · Veteran Member

Hi Rebecca,

Welcome! I'm a geno 3a too and I'm in week 17 of a 24 week treatment with Sovaldi and Ribavirin. I'll try to answer some of questions... I was diagnosed in March with chronic hep c. I had an ultrasound in Feb, but it was prior to my diagnosis and the results of the test showed that I had a "fatty" liver (pretty common with geno 3a). I was tested about two weeks after the ultrasound for hep c. About a week later I got the results. I was then referred to a gastroenterologist, which took about a month. On my first visit I was given a fibrosure test to determine the degree of liver damage. The results took about a week. That's about the time I found this forum, and I thank God that I did. I was very freaked out and had a million questions. Hearing from kind folks like Tig and Jill helped me deal with this mI began taking the meds on 4/13/15. Up until about two years before my diagnosis I was a pretty athletic, healthy guy (I'm 54). In the two years before my diagnosis, my health gradually began to go downhill. First thing was a staph infection which landed me in the hospital for a week. Shortly after that, I developed hyperthyroidism. That was treated successfully but I really didn't feel any better after the treatment. I also seemed to catch every cold and flu that came around. In short, I felt like my immune system was failing me. To make matters worse, I had also developed a rash that wouldn't go away. I felt tired all the time and I also believe I was becoming pretty depressed because I felt like my body was spiraling out of control and I couldn't figure out why. The first week after taking the meds I began to feel better. Within two weeks, the rash that I'd been dealing with for over a year disappeared and hasn't returned. At four weeks I had my first blood test and the virus was undetected. It's been undetected in every subsequent test too. As far as side effects go, everyone's different and I can only tell you what I've dealt with. The first month I had none. After that, I've developed a "riba" rash on my face but it's held in check with Caladryl clear lotion. I've also had backaches that come and go. My doc prescribed pain meds that keep that in check also. I tire by the end of each day, but I realize that I'm taking powerful medications and I try to take it as easy as possible while I'm on going through treatment. I haven't missed any work (in fact I ride my motorcycle to work most days), and my overall outlook is certainly positive. I honestly expect to achieve SVR once I've completed treatment. It's a little bit of a bummer to deal with 24 weeks of treatment but that's the protocol for 3a's right now. Sovaldi is one of the new DAA's and Ribavirin is one of the "old-school" drugs. I personally believe that most, if not all, of my side effects are caused by the Ribavirin. There are new treatment options that should be available by the end of this year (or early next year) that won't include Riba. I chose to treat now because I didn't like the downhill slide that I was on. There are tons of people on this forum who will answer any questions you come up with. I am certainly no expert. I just wanted to share what I've dealt with because I'm a 3a also. Your friend is very lucky to have someone who cares as much as you do, and she'll do fine. Believe me, we all understand the shock that comes with finding out we or someone we care about has to deal with this virus. But like Tig said, your friend is very fortunate be diagnosed now. The new treatments are going to eradicate this virus in the very near future. They work. Best of luck to you and your friend.

Cinnamon Girl · Guru

Hi Rebecca, welcome!

I`m glad you found us, you need to be able to talk through your anxieties and concerns and all of us here understand that a diagnosis of Hep C can be very scary, for close friends and family as well as for the person themselves. I agree with everything Tig has told you, and I`d like to assure you also that this is a very treatable and curable disease these days.

I`m giving you a link to an article especially for family and friends dealing with some of the same issues. Not all of it will apply to you and it is slightly out of date as far as treatment descriptions are concerned (see Tig`s link for that), but I think you might find it helpful...

http://hcvadvocate.org/hepatitis/factsheets_pdf/Family_and_Friends_Guide.pdf

Remember you`re not alone with this, you can talk to us any time you like and please feel free to ask any questions you may have.

Try to relax, I`m sure once you`ve learned more about Hep C and have become more acclimatised to the fact of your friend`s diagnosis then you`ll feel a lot less stressed and worried. And by the way, your friend is very lucky to have someone who cares about her so much! smile

Flower Child · Member

Thank you so much! Must convey my brain is 100% positive she will be okay. It's been difficult getting intensity to recognize logic. Fortunately, she is with someone who is supportive. And I am using this time window to go through the "raw" shock in pure isolation. There is no way I can put this on her.

I have been walking on a tight rope trying to swiftly change weakness into pillars of strength (reality). Everything in me knows she will be fine. She is 53, unsure exactly how long she's had Hep C. It could be as long as 30 years (long end). Yes, the chance of fibrosis is there, but I remain 100% confident if there are any extra issues it most certainly can and will be dealt with and she'll be in good form.

Uncertainty is my Achilles heel in every way possible. Constantly remind myself this is temporary and every day is a day closer to something concrete. But I do forget to breathe (thanks for saying that). Nothing is more important than her well being. Just typing these posts is a giant step in the right direction to getting back on the ground. Thank you!! Knowledge, concrete facts, personal stories all help me with the question mark.

Tig · Admin

Hi Rebecca,

Welcome to the forum! I want you to do your best to relax, okay? If someone has to find out they've got Hep C, there hasn't been a better time to find out. The new DAA therapies are so effective and aren't anywhere close to the treatments we suffered through just two years ago. A lot of the literature you're going to read online now still deals with many of the older protocols. So always be sure you're reading the about newest therapies.

It's not unusual to wait that long to be seen by a specialist or an imaging center. Some here have been told they can't see someone for months, so two weeks is very acceptable in my opinion. There are a lot of considerations at play here. Do you know how long your friend may have been infected? If I may ask, what is their age? This is a very slow, progressive disease and many of us were infected for decades before finding out. Some of us experienced no serious consequences over those years, some progressed to advanced fibrosis. Until the labwork and tests are completed and you find out some more particulars, it's a tense waiting game (as you're aware).

You can tell your friend that genotype 3 is treatable and the rates of success are very high. I'm going to include a link to some of the latest information and treatment recommendations on GT 3. There's info on the trials and success rates of the newest treatments. I hope it helps to put your mind at ease. Do your best to not worry and instead be the positive support your friend needs to get through this. Because after all, she's going to beat it and I want you to believe that too! If you have any questions, don't hesitate to ask. Check out our search function at the top. Use a keyword or two and it will open the topics discussed here on the forum. Deep breath................................. smile

http://www.hepatitisc.uw.edu/pdf/treatment-infection/treatment-genotype-3/core-concept/all

Flower Child · Member

I have browsed here as a guest for about a week now, and if I had not stumbled on this forum my state of mind would surely be gone. No words can convey my gratitude toward each and every single person here.

A very dear best friend of mine was diagnosed with Hep C a week or two ago. Everything I read tells me I should be handling this okay, but I am not. Reason is because there is a very LONG 2-3 week wait before she even gets to the ultrasound. And this has created so much uncertainty the distress is near or beyond my threshold.

Does it normally take 2-3 weeks to get an ultrasound? Without the ultrasound I am uncertain, & uncertainty is my greatest weakness. I cannot at all glue myself together to become the support I strive to be. She is my dear sweet friend and deserves the best in me, not this.

Logic tells me she will be fine. Her genotype is 3a so I am preparing for the circumstances specific to this genotype and researching the treatment options (past, present, and even future) for all possibilities during this painful wait.

I will be posting in the support section with further questions later. For now, I would like to know if anyone had "silent" symptoms before diagnosis (I think I have seen this in my friend?). Also, any and all experiences are welcome. I have seen friends through major diagnoses before (and was a case manager) but nothing has floored my mind like Hep C. I spend 5-10 hours daily reading up on everything, retaining half of it, piecing it together now. Worst part of the wait for the appt is I am completely isolated with this. I am so versed in confidentiality that I have told nobody. And I can't be so crude as to telling her about the elephant in the room because she is going through it. Can't sleep because of the wait, so hope this makes sense. The rug was certainly pulled up from under me (certainly her)!

Thanks,

~Rebecca

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