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Canuck


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Hi,

Hope all goes well and goes all your way tomorrow. smile

It would be nice if the hep doc turns out to be a "nice" person, as well as a thorough experienced person too!.

- Start collecting up (for yourself, your own records at home) copies of all your labs and assessments that you have had done to date, and, as you go along.

- Take a list of questions or requests you may have, with you, to your appointments - so that no matter how hurried the appointment may be, you will not forget to ask your most burning questions, or leave any topics out that you wished to bring up.

- If you have not had an abd. U/S or fibroscan, ask for both, leave with requisitions in hand for them (or with them "ordered and booking underway", if possible. (Do you happen to know where a fibroscan machine lives, in your locale?)

- Inquire about having your hep A/B immunity titres drawn and tested, and should you require an A/B series to be done, or re-done (in full, or part), or if pneumoccocal or influenza needs to be done - figure out, with your doc, the best, easiest, and fastest ways they can be completed. (For me, the fastest way to have my lacking immunization brought up to snuff and completed, was through Public Health, not via the hep docs office - the docs guided/dictated what I "specifically" needed (based on my titre level test results/history of immunization and my suspected level of cirrhosis), Public Health supplied and injected all of what I was required to have.

Off the topic of your appointment tomorrow, I have been mulling over your first posts, fevers and the weight loss thing - are you still having fevers, are they "measurable" fevers, daily?, how high?, or did that cease? And the weight loss, how much, how severe and over what time period?

Good luck tomorrow, it will be a small relief for you, just knowing you are now officially entering inside this "door of care". smile C.

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
CrystalJ


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My appt comes tomorrow, I am so ready to get this ball rolling, I hope my insurance company doesn't try to hender this treatment in any way. That may be my one fear going in. Ready to start feeling better agagin

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Crystal Jones
CrystalJ


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Your inforation is second to none. More informative than any doctor I've ever dealt with( and I'm a nurse).  You are so helpful and encouraging, thank you for your time and wisdom.



-- Edited by CrystalJ on Tuesday 21st of March 2017 06:53:52 PM

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Crystal Jones
Tig


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Hi Crystal,

It will depend on what your specialist determines is required after a review of your case and talking with you. There are a number of tests that must be completed to make a determination of your current health and of course that includes your liver! Write down a list of questions to take with you, if you have any. Trust me, you'll never remember what you wanted to ask when all you have is seconds to remember!

Primarily your doctor will ask you some questions about your past, where you might have been exposed always comes into the discussion. Whatever you decide to mention is entirely up to you. Some people simply don't know and if that's you, tell them as much. The important thing to know is it doesn't matter how you contracted HCV. They are concerned about reinfection in those that have been exposed to the virus through drug use. Many on our pages fought two battles, drugs and the dragons that jumped on for the ride. 

Once the preliminaries are taken care of, there are blood tests to be ordered, an assessment of your liver fibrosis and through them the doctor determines which treatment regimen is most appropriate. My first appointments were quick. He pushed and palpated my liver to determine it's size and suppleness or lack thereof... Then he sat down and got busy ordering tests. It had been years since I had a colonoscopy, so he ordered that and an endoscopy. They are only done as needed and are not a requirement in most cases. It had been years since I had an updated fibrosis stage, so he decided to do another biopsy. They don't do biopsies much anymore for initial HCV fibrosis determination. They have moved on to blood work or Fibroscan Ultrasound to determine it now. Used to be biopsy was the only way to find out, but not as much as they did in years past. No big deal if they do, it's very accurate and simple. The thought is worse than the procedure in my opinion. Most sleep through them anyway and they're done on an outpatient basis if needed.

Okay, now that the tests are completed, you'll go back and see the doctor again to obtain the results. Once you (they) know the specifics, genotype, viral load and fibrosis stage, they select the best treatment possible and request authorization from your insurance provider. They have let up on the obstruction to care, so hopefully your insurance approves it straightaway. If they deny it for whatever reason, usually it comes down to a low fibrosis stage and they figure you can wait while they treat someone in worse shape. That's a ridiculous reason, HCV should be treated on initial discovery in my opinion. The medical community concurs and sometimes it takes the good doctor another day or three to knock some sense into them. Many of the members have had to appeal an initial denial, only to find out that the appeal process was only required to see if the doctors were serious. It's a strange world we live in, but it was originally deemed a way to save money, by delaying care. That hasn't worked out so well for them. The approval process has been refined in most cases and goes forward without much hair pulling.

Now once all these preliminaries are accomplished, the rest is straightforward. You get your medication, maybe have to sit down with the nurse or doctor for a brief discussion on how to take it, when to take it and will provide you with a schedule to follow regarding blood work. Some doctors will do viral load testing every four weeks through treatment, some won't do any until 12 weeks after you're finished. I recommend one after 4 weeks and if it's undetected at that time, another isn't needed until 12 weeks after you're done. Even so, I would ask for one at the end of treatment for good measure and the resulting moral boost it provides. If you're undetected at the end of treatment, the chance that you won't go on to SVR (cure), is remote.

I'm sure I'm forgetting to tell you something, but that's why you're here, to allow me and the others to load you up with useful facts and fun banter. It also helps to give my aging brain some time to remember the rest, ha, ha! Seriously, after you get the initial testing out of the way, the treatment itself is a piece of cake. We'll have additional pointers for you as you progress. The biggest tip any of us can provide during treatment is to understand that you're fighting a disease that until now refused to die with any ease. You have to do your best to avoid anything that your liver doesn't like. Don't add additional strain to it, like alcohol, smoking, OTC drugs and all supplements. Be sure you tell your doctor everything you're taking. There are many drugs that are contraindicated when taken with these new drugs. When you have taken the step to decimate the Beast, following some simple guidelines will assure your path to the cure. Drink plenty of water, eat right, stay absolutely compliant with your daily medication and don't push yourself. These new treatments are easy, but your body is still battling a disease that won't give you many opportunities to ignore protocol, if any. Do your part and the drugs will do their's.

Guess that's it for the moment! If you have any further questions, don't hesitate to ask!  

Peace!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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CrystalJ


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Good morning to all! My first appt with a Gastro is April 5. I'm awaiting patiently. What can I expect with my first appointment?

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Crystal Jones
Iris Dragonfly


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Hi aww glad you found this place, it's nice to find others who understand. >hugs<

Try not to worry too much (that's what I did and it made me real depressed). One can go years and be relatively well.

Sorry you aren't feeling so great, I remember running a fever and being kinda vomitus and real achy all over all the time, when I first came down with it. Was pretty sick for a good 3 to 4 months and on into 6, after 6 or 7 months I went back to work but never felt like my spunky self again. Overdoing stuff will bring on a low grade fever, sore throat and aches. It's been over 35 years and am still waiting for treatment.

For pain relief I take asprin, all others give me a stomach ache. I disolve them in my mouth first and drink lots of water with. Draw back is bleeding, but I have to take a daily one any way. 

Best of wishes, look forward to your updates, Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Tig


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Hi Crystal,

Usually the old standby, Tylenol or Ibuprofen are safe to use on a limited basis. Too much of a  good thing is never advised, especially when it comes to medication. They are both metabolised in the liver and should be used only when needed, in the proper dose and never for extended periods. Always seek the advice of your doctor when adding any medication to your routine. Your doctor may have some additional suggestions for you as well.



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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CrystalJ


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Hehe, your right that is my new best friend. Is there anything I can take for fever and body aches. If I could knock those out I could get through a day of work.

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Crystal Jones
Ruby Red


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new friend.jpg



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GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 
wendyo


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Hi Crystal,

 

I too am a 1a. I ran a low grade fever often before I was successfully treated. All I can do is echo what everyone else has said: drink plenty of fluids, rest when you need to and try to stay away from processed foods. If and when you feel up to it, exercise. even if it is just a walk ot stretching, it will help. Stay off the internet (well, not this forum) just don't google HCV as you will make yourself crazy! 

Let us know when your appointment is.

Hang in there girl, you are on your way and we are here for you,

wendy



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
Observer


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Hiya Crystal, 

Sorry to hear about the confirmation of your HCV status. cry

But I'm also glad that now you know and by knowing you can get on the path to getting rid of it.

I often ran a slightly elevated temp when I was sick with HCV , but I am pretty sure it was because my immune system was practically nonexistent and any infection, flu, cold.....was almost impossible to get rid of.

Advice?

Eat as well as you can, small, appetizing and nutritious meals. Even if you're not hungry.

I found starting my day with lemon in hot water beneficial (and sometimes added apple cider vinegar) 

Dont do any crazy detoxes or anything extreme.

research stuff that's hard on liver and avoid it.

Listen to your body.  If you're tired ....rest. 

Dont worry, and try to be a patient patient. 

viral loads fluctuate drastically...don't let that number cause you worry.

I fluctuated from 7 million to 5 million to less than 1 million over the last 15 years before I was treated.

I hope you feel better (from fever) soon and you don't have too long a wait to get on treatment.

A

 



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Canuck


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Sorry CJ,

We all hope we are of the small group who test positive for the antibody, but discover we have already beat the hep C off, all by oursleves, without treatment drugs.

But the rest of us, who did not fight the hep c off when exposed to it, now have the very best arsenal of drugs in the world at our disposal to send it packing, in short order.

I am glad you got referred to the hep specialist.

Sorry to hear about the fever and not feeling well. What do you think? Flu-ish or what? What has your temp been and for how long? Any other symptoms? I think TODAY was a VERY good day for you to be "off" work, considering all. How much wgt. loss, what do you normally weigh?

Now is the time to try to be very, very good to yourself, in everyway possible. 

You are young, and otherwise healthy I hope, no other major systemic disease processes going on? We can guess you may have been diagnosed fairly early on in your HCV, which is always a bonus. And, you will get good modern treatment and attention, with the best drugs there are - you will do well.

I too wish I had fought my hep c off, all by myself (just as I DID with my hep b back in the '70's), didn't know I had also picked up hep c in the '70's as well! HCV undiagnosed until 2015!

Tig is right "being diagnosed" is a good thing! You can now get to treatment. 

Did your family doc arrange for you to have your hep A and B immunity titres tested? That is something you could work on while waiting for your hep doc appointment. Just in case you need some re-immunization series to bring up any lagging A/B immunity titre levels. Assume you are already up to date/immunized for influenza?

As a nurse, you already advocate for others, and you already know you are your own very best friend and advocate, but WE TOO will always be here for you, to help in ANY we can. When you feel up to it, fire away for any inquiry and or sharing of info. smile C.

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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Hi Crystal,

Well POO! I was hoping you'd be one of the 20%ers that cleared it by yourself. It happens but not often enough. Knowing is a good thing, don't let the confirmation get you down. It's the people that go on without knowing, that experience the severest problems undiagnosed Hep C patients can have. This is easily treatable and you will achieve the success you desire.

Genotype 1a is now one of the easier genos to treat. Wasn't too long ago it was considered difficult. The new drugs have changed that, so don't let that be a concern. If your doctor should decide on Harvoni, with a viral load below 6 million, and you are treatment naive, you may qualify for the 8 week course. There are several options and your specialist will explain the specifics.

Do you know what your Liver Profile and CBC results are? I'm curious to know what the ALT, AST, and Bilirubin are? You will have to get your fibrosis stage established, there are several methods to do that now. Fibroscan seems to be catching on fast, as well as the blood marker test called Fibrosure (or a similar algorithm). 

I honestly don't know why you are running a fever, that's not something we relate to HCV symptoms. The flu has been rampant all over. The fatigue, brain fog, joint discomfort and general malaise are common. Treatment will bring improvements in many areas. These begin to happen as you progress with treatment and continue as you recover. 

We have spoken on a number of occasions about diet and hydration. I want you to review our Nutrition section and find the foods your liver and metabolism benefit most from. We have a thread there called the Green Smoothie Ranch. Those recipes have helped so many. Find something that sounds good and just try it. That's going to give you the fuel you need to gain some of your strength back. You need to balance protein and carbs to give your muscles the nutrients they need to function and avoid the muscle loss you seem to be experiencing.

Start today, evaluate your diet, increase your water intake and cut out all the unfriendly substances. As an RN, you know what is harsh on the hepatic system, evaluate that and put a plan together. One step at a time, one day at a time. If you need to take some time off, do it if possible. When you meet your specialist, have a list of questions, your expectations and let him/her know you will be part of the team. Go in with some good knowledge. It lets them know you're committed to doing it right the first time!

Let me know if you have any specific questions and we'll do our best to help. We're here for you, but ask that you do your best to be positive and confident that you will beat this, because you will... 



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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CrystalJ


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Good Afternoon to all, I received my results this am , I now know that my Genotype is 1a, and VL is 1,230, 000. My PCP just made a referral to a Gastro. It seems like I will have to wait forever to feel good. Not much of an appetite and a major weight loss . I have been running a fever for days. Any good advise until I see the specialist? This is real crazy for me because I am a registered nurse. I had to leave work today because I just didn't feel good enough to take care of my patients. Again, thank you all for so much support.

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Crystal Jones
Observer


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Welcome Chrystal,  

Getting diagnosed with hepC is pretty scary, but really it is so much better than not knowing.

As the others have said, if you do have a viral load/active virus, getting cured is relatively easy and statistically an 'almost' sure thing.

Jimmy's advice to stop drinking (if you do) is super important to listen to.

It's hard when you don't have much appetite, but do make yourself eat really healthy foods.

Tylenol is not liver friendly.  

 

Let us know when you know and if it is active HCV, our lovely dragon slayer team will advise, listen, care and help.

A



__________________

61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Ruby Red


Senior Member

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Welcome CJ

You have landed in the right place.  Here you can ask questions without being judged, receive information and most importantly support.  People here have either been in your shoes or are walking with you.

Rubyhandshake.gif

 



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__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 
Canuck


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Hey Crystal,

YES! VERY true what Jimmy and Tig are saying about waiting for the PCR test!! I DID skip over what you wrote and got ahead of myself there! - (I should read twice and type once!) - I should have caught that! You and I could both be getting ahead of ourselves here with the tests! smile At this stage you COULD very well be positive - but just for the antibody, and not be in need of HCV treatment! Sit tight and wait for the results. C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
CrystalJ


Member

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Thank you all for the outpouring of support. I could have never imagined a platform like this for information and support. I will keep you posted with results as I receive them . Again thank you all for such quick responses, that means alot!

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Crystal Jones
Tig


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Hi Crystal,

Welcome to the forum! I know the circumstances are a little unnerving, it's normal. We will help set your mind at ease. I hope so anyway.

Jimmy makes a valid point. If you have only tested positive for the antibody, there is a 20-25% chance that you were exposed and your own immune system cleared it. We as Hep C patients, once infected and cured, will always remain positive for the antibody. It doesn't mean an active infection, just an exposure to it. Until you have a confirmed and detectable (quantifiable) viral load, you simply don't know. Since you are experiencing symptoms and various other manifestations, it's good that you're getting these tests done. Best to find out as early as possible!

There hasn't been shorter, more effective treatments for this disease, ever. The side effects profiles are low and easily tolerated. Once you get all of your testing back, please let us know. Find out what your Liver Profile and CBC (bloodwork) are. As Canuck mentioned, an abdominal ultrasound and some form of liver fibrosis stage (level) has to be determined. These are easy to accomplish, so no big deal. Your doctor or nurse will set them up and let you know. They will also coordinate with your health insurance carrier. It should all be fairly straight forward. We'll help you make sense of it! You'll get this done and it'll be history in no time!

Here is a LINK to our New Members thread to introduce you to Hep C. There are other great discussions and links if you use our search function at the top of the page. The different categories are viewable from the home page. You can always ask for help and direction. 

Another Link: HepC Advocate   

          

 



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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JimmyK


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CrystalJ wrote:

Good afternoon, I have been recently Dx with Hep C. Awat in results of my viral load and genotype. I have been symptomatic for 3 months. Fever,  body aches, weight loss and poor appetite. I'm scared as hell, I don't feel like my GPS is working fast enough. I'm very uneducated on this, just feel like I don't know my fate right now. Please offer up any advise. Would be grateful 

 Greetings,

I echo my sisters thoughts, the new treatments are fantastic and very effective.

A couple of thoughts:

"...I have been recently Dx with Hep C. Awat in results of my viral load and genotype."

The actual diagnosis of Hep C only comes after the VL is established. Right now you are informed of a positive reading for the antibody. You have in fact come in contact with Hep C and may well have it but the results of the VL test will confirm.

Initial diagnosis and information does come hard at first. The main thing that leads to unneeded stress is lack of good information. For that you are in the right place. We here are the real thing. We have walked this path together and have come to find many of out initial concerns were for naught.

If you drink, stop. Start a program of increased hydration and start flushing your system out a bit better than usual.

335 days ago I had Hep C and started my second attempt at treatment. 14 days later the Virus was gone and has not returned.

You will be fine and we want you here and will help. wink

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Canuck


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Hi CJ,

Welcome here. This is a good place to come when you are newly diagnosed and scared. 

Others will be along shortly to meet and greet you and to try to make you less scared about things.

It is actually GREAT news that you were successfully diagnosed! It is much better to know you have HCV, than to not know - it means to can deal with it now, it means you can get it cured, and can be rid of this virus in quite short order! Half the battle is knowing you have it, before it can cause much damage. Being diagnosed early, when young, has many advantages! So many in the past were not lucky to get it diagnosed early in life, some of us did not find out we had it for many, many decades, like many of us "oldies" on this site can attest to. The younger the better! Even us oldies, who have harboured this virus for multiple decades, are showing a really remarkable regaining of our health, and healing and regneration of our hard done by livers!

So, you are off to a good start! You will do well. You should know that there are (nowadays) many VERY excellent, extremely effective drug regimes that will cure you, no matter what your GT is, and the treatments are of short durations. Nowadays is a very good time to have your HCV cured!!, never a better time than right now! The new daa's have changed EVERYTHING!

Try not to be scared, we all know how shaken one feels when first diagnosed, but things have changed, for the (MUCH) better these days, you WILL be cured, and your HCV will soon just become "history".

I am sorry for how you are feeling physically as well. These things too will chnage after your cure.

We all know the feeling of hurry-up and wait! But, you've got the ball rolling now, it will happen, it's a "process", follow the steps they put out in front of you and tackle them one at a time.

Has you doc arranged for a "fibroscan", and, an abdominal ultrasound for you yet? 

Fire away for questions, we will all try to help with info. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
CrystalJ


Member

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Good afternoon, I have been recently Dx with Hep C. Awat in results of my viral load and genotype. I have been symptomatic for 3 months. Fever,  body aches, weight loss and poor appetite. I'm scared as hell, I don't feel like my GPS is working fast enough. I'm very uneducated on this, just feel like I don't know my fate right now. Please offer up any advise. Would be grateful 



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Crystal Jones
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