Hep C Discussion Forum

Cheddy · Moderator

RE: New and Scared

Iris Dragonfly · Guru

Hey Dog, thought I would chime in as well. Peace!

There was a saying with this disease once upon a time..."More people die with the disease than from the disease. And then there was this friend who used to say, "you feel like you're dying...but you don't" Now that there is a number of options, all of which are safer and easier to tolerate than the "old" way (one of the reasons I waited was my Dr. said better treatments are coming) So I waited. Then My insurance wouldn't pay...that was frustrating. At last they gave in and I already am Not waking up exhausted anymore...that is HUGE.

Best wishes on your treatment journey, BB...Iris

SeeTheLight · Senior Member

Hi Doglover, Welcome to you. Good luck on your journey. Lots of help and support around here. Try not to stress - A Hep C Free left awaits you.

5-1-18 · Guru

yay, doglover and lilbrownie will be on the treatment train; and we all know it will be a good trip to arrive at UND.

lilbrownie · Member

I know how you must feel to some extent. I know when I first was diagnosed I was SO scared I was planning my funeral in my head! I did NOT want to get a biopsy and opted for "head in the sand" lol, but finally caved and had a biopsy 6 years later!

This was in 2007, flash forward to 2018, and I'm still around, and finally deciding on treatment.

I did quit drinking, cleanup up my diet, and generally treated my body the way I SHOULD have 30 years ago. I am glad you are here, I'm new too, and this seems like an awesome place to feel not so alone in this journey of ours.

Observer · Guru

No need to apologize Doglover,

Its a horrible disease but because its so slow to progress when the seriousness starts to sink in, of course it can be scary.

Its just so so great that we all get to benefit from the incredible development of the Direct Acting Antivirals to get our cure...the interferon days were so difficult for the people doing that and the success rates had pretty bad odds. (Luckily for us our Tig was a success story)

Im so glad youve set up an apt with a liver doc.

Make sure you get copies of all the blood tests because we all like to be the loop biggrin

Cheddy · Moderator

Don't be sorry. You can talk about stuff here.

You've come so far in taking care of yourself, and shaping your life. This is just a chance to to come further. Your head is tricking you with the "what if" game. I think you are going to be pleasantly surprised.

I am thrilled you are going to see a specialist! It's a good idea to call now because it can take a while to get in. My referral came through my GP and I waited a little longer for the one she loved the most.

No apologies needed. Isn't it great to find some help?

Take care, and call.

Canuck · Guru

Yay! Good for you. Let us know when you get to go see this doc.

How did you choose which hep doc to go to? - a hep doc you knew of, or have heard of before, a hep doc you have seen before?, or, maybe from friends who said "go to this doc", or perhaps your family doc chose this hep guy for you?

What kind of a hep guy is this doc you have found? - in some (certain) facility settings (the way it may be "set up"), people are being taken care of by "Nurse Practitioners" (NP) who work with and under the direction of the hep doc, and it can be the NP who the patient ends up seeing most often throughout treatment.

Docs can hold different hats - some hep experts are actually internists, or are gastroenterologists, or specialize in infectious diseases, or can be quite ordinary general practitioners but who just happen to be extremely experienced in treating hepc patients.

I'm glad you are getting the ball rolling. : ) C.

Tig · Admin

It’s all good, Dog! We look out for each other I’m glad you got that consult. Keep us informed.

Doglover32 · Member

Hi guys, I apologize for getting worked up over this its just felt like its been hitting me all at once. I did Get a referral for a doc today and am setting up an appt for after the holidays to get checked out. I hope I didnt come off as inconsiderate because Im sure many people have had problems much worse than mine on here. I TRULY appreciate you all sharing your experience and advice with me, its been more helpful than you can imagine

Observer · Guru

I have cirrhosis and before treatment I had to crawl up the stairs at night, I went to bed exhausted and woke up exhausted every day. I had to lie down every 5 minutes when doing dinner prep for my family. I couldnt work, I couldnt go for walks, I became allergic to a zillion things... I had rashes, I had dark circles under my eyes, my teeth broke, small cuts would get super infected and wouldnt heal..There was no question that I was a very sick person.

Im telling you this to explain that You would have been warned by your body, in many ways that could not be ignored if your disease had progressed to cirrhosis. So... its pretty unlikely.

good that you are taking your health seriously now (congratulations on getting clean) fitness/training is so vital for both physical and mental health, now get on treatment and stop imagining/convincing yourself that you have cirrhosis.

btw...even with cirrhosis, I am cured of HCV and many of those issues are gone and the others are much less impactful on my life.

lamassu · Senior Member

Really, quit worrying about cirrhosis. You don't have it. Lets suppose you did? It would be even more urgent to get your Hep C cured right now. Go see a gastroenterologist and get started you have tests to be done before a DAA will be prescribed for you: the sooner you start the sooner you are cured. Is there some reason you have not already scheduled a first consult with a liver doc?

Doglover32 · Member

I'm sorry I'm just trying to get an idea as to what to prepare myself for. Liver damage is one thing and I've mentally prepared to take some of that on.... but I feel like cirrhosis at my age would be devastating news. I've worked really hard to get to where I am Which is why I'm fretting over this so much. I guess I hadn't taken in the gravity of all of this until recently when things really started moving in the right direction for me, career, life, etc.

Thanks again everyone for hearing me out and any insight. It's all helpful and encouraging.

-- Edited by Doglover32 on Thursday 29th of November 2018 04:10:28 PM

-- Edited by Doglover32 on Thursday 29th of November 2018 04:10:39 PM

Doglover32 · Member

I know, Im not actually afraid of going and the Procedure. Now Im just terrified of the results and that theyre going to tell me I have cirrhosis.

Cheddy · Moderator

"For the time being" is just time you are digging a deeper hole, both physically and mentally. Seriously, pick up the phone or get someone to do it with you. Maybe you can get someone to go to the doc with you.

It's not that bad!!! You may be surprised that it seemed so scary.

Good work on getting yourself clean and fit. That is awesome! You will be amazed at the powers you gain as you keep taking good care of yourself.

Now, call. Get treated. That's how you get better biggrin .

-- Edited by Cheddy on Thursday 29th of November 2018 12:36:27 PM

Tig · Admin

Hep C is a slow, progressive disease. It can take decades to develop (cause) the damage that accompanies it. It doesn’t simply destroy your liver, but many other areas as well. They are called “extra hepatic manifestations”. Input that into our search function and read up. This disease begins with almost no symptoms and then effects every system in your body. It does it so slow, most people end up relating the problems to something else. Immune function suffers, digestive, skin and nerve disorders, arthritis. I could go on forever. There’s no good reason to postpone treatment. People used to avoid treatment because of a fear of drug side effects or didn’t have any symptoms, thinking they were fine. Truth is, there’s a wildfire burning and you need to put it out.

As long as you’re actively infected and drink alcohol, you exacerbate the disease and problems it causes. That’s an unavoidable fact. Avoid it, that’s good advice. Get treated as soon as you can, that’s my best advice. It’s easy and it’s effective. Go get it...

Doglover32 · Member

Also, didnt mean to sound like a douche there talking about benching etc. working out was one of the main things that got me off of drugs. The point i was trying to make was that Infeel fairly in shape. Ive never felt bad to the point that Ive thought, man, I need To see someone about this ASAP. Last year I was Having some major digestive issues and decided to make some dietary changes and cut down on booze and they went way, that was really the only time. Thanks again guys.

Doglover32 · Member

Thanks everyone, I was Just shocked when I texted him last night to find out about his results. I was Feeling pretty optimistic about everything after hearing all of your advice and it kind of floored me that he was in that bad of shape. He did have his pancreas removed last year, so I dont Know what if any of a difference that makes. Im just at a loss right now, I went To the gym last night, had a killer work out, benched more than i have in ten years and feel great today, outside of the news from my friend. I feel like I should Be feeling so much worse if it were as bad with me? I do get some brain fog on top of the fatigue, but I can Never tell if its from this because i have always had major concentration/memory issues. I know Im blabbing right now I just Really dont know who else to talk to that is knowledgeable on this, at least for the time being until i get checked out, which Im trying to psych myself into doing.

5-1-18 · Guru

me too dog. i injected that right into me. .. but so did so many others ; it's almost a "thing" now

i blame the education system for not educating children well enough about the real stuff out there. they are better educated today and the new "thing" is to not worry about getting the C cos there is a cure cry disbelief

that's what my hepC specialist told me.

so what i'm saying is we have no more dues to pay for past ignorance and fun....that is over now and this is what's happening.

we get on board the treatment train and be thankful, that is all we do now and become UND.

Cheddy · Moderator

I don't know for sure how I contracted HCV but, for sure, I was no saint. And I don't have any regrets, either. I'm here, cured, able bodied and happy. Please don't confuse yourself with your friend. Everybody is different.

I will just reiterate that you need real results above speculation.

Really, you can beat this. I know it's hared to put aside the worry, but get some tests, and some facts, and take it from there. You're going to get cured, and you are going to rock it.

Picture that.

Hoodietree · Senior Member

Dont worry Dog-lover. Youre not alone. Just dont go back to drinking and drugging ok? Get cured and stay clean

Shemp · Senior Member

Listen Dog,nobody here has led the life of a saint.Nobody cares how you got it.Hell,if you look at the average age of the people on this forum,we were all young and crazy at some of the craziest times in history.Nobody is going to judge you.You need to take a deep breath and take this one step at a time,with good info from your Docs.What if's and second guessing will make you nuts.Take it one step at a time

Doglover32 · Member

He was having extreme symptoms before he was checked and treated.... extreme bloating and pain in abdomen and fatigue to the point that he wasnt able to attend work for a few months. Which lead to him getting checked out, Im just so damn worried because while I dont have these symptoms to that extreme, I definitey Do not feel like myself and have off days. I dont Know if Im just more bullheaded than him. Im just so freaked out.

Doglover32 · Member

Hey guys, Thanks everyone for the encouraging words. One thing I should Mention is that I did get the virus through IV drug use. I struggled with it for years and have been off of drugs for 4 years now. I dont Know how much this effects the toll it has taken on me. The reason I have been so worried is that a buddy of mine, who contracted roughly around the same time as me was recently treated and before his treatment his liver levels were an f-4 or highly scarred. I am extremely concerned because I feel like I probably Spent more time boozing than he did, though he did have a harder time with the drug use. This is information that I found Out this evening. Sorry for not Mentioning the drug use earlier, it has just been a long time and I didnt Know if it made a difference. Thanks again guys this is really helpful for me.

lamassu · Senior Member

Tig is right of course. I forgot about FibroSURE as my gastroenterologist prefers the FibroScan. He made me drive two hours to get a 15 minute test. You can read about the different tests at Evaluation and Staging of Liver Fibrosis. Next time I see him I will ask his opinion of FibroSURE. Probably comes down to where your doc did his residency or fellowship as to preferred tests. A simple blood test would certainly have been more convenient. Medicare might play a factor also as they may require specific tests to approve payment for an expensive course of treatment. Finding out is on my to do list.

-- Edited by lamassu on Wednesday 28th of November 2018 07:25:26 PM

Tig · Admin

Hey Dog,

Do your best to listen to this Older Dog, you don’t have nuttin’ to worry about. Listen to our family of experienced Warriors here. We’ve been where you are right now and most of us have 2-4 decades on you in age and experience. I know that doesn’t help your anxiety, but I want you to take the advice seriously. None of us are here to tell you anything but truth, that’s what makes this place one of the best forums available and there are some good ones. We’ll do our level best to give you the most accurate information available and promise to give it to you honestly and without judgement. If you have a concern or a question, don’t hesitate to ask.

One more option to inquire about regarding your current fibrosis testing. In addition to the Fibroscan and biopsy that Lam spoke of, there’s a fairly recent set of blood tests that evaluate various blood markers. Combined they can also estimate fibrosis levels and are being used more frequently. That test is called either the Fibrotest or Fibrosure. Your liver specialist will know what that is.

Dont worry, Bro, you’re going to do just fine. You’ve got us on your team!

Cheddy · Moderator

Excellent advice, lamassu.

Doglover, unfortunately our brains sometimes take over without knowing the facts. You are experiencing outcomes that haven't even happened. That's called stress, and it doesn't help at all.

You may count yourself lucky you didn't get treated 14 years ago. It was hell. Now, it's and 8-12 week process with tolerable side effects and an outstanding rate of cure. Take that energy out of worrying and apply it to getting information. Get yourself to a liver specialist and brave the steps. That's how you avoid getting yourself into the actual state of your fears.

No worries about being scared or dramatic. Most of us have done some wailing here and if we can help, we do. Get some tests. You are likely to get high marks, from what you have told us about you.

Get on it. Pick up the phone. Let us know so we can be here for you,

Peace,

Cheddy

lamassu · Senior Member

Doglover32 wrote:
Thanks again guys. Im just really struggling with the fact that Ive let this go for so long, (14 or so years) Im going to get on top of it now but Im so concerned Im going to go to the docs and theyre going to tell me that I have Cirrhosis or that my liver is shot. I know I need to get over it and do it, its just extremely hard for me right now. If I did have cirhossis would my symptoms be more severe? I was last tested 3 years ago and my ALT/AST was slightly high when i went in and I had A low viral load. I came back 2 months later after taking some time off of drinking and they had returned to normal. I Am working on getting paperwork for my exact numbers. Have you guys been in touch with people in similar situations? Im worried theyre going to tell me Ive already really damaged my liver and from what i read cirrhosis is irreversible, which means I will probably lead a short life. I hate To sound dramatic here, Im just really trying to get my arms around this and gain some perspective.

Doglover,

At your age and from the history you have given so far it is very unlikely that you have cirrhosis. You need a non-invasive test called a FibroScan to determine your F score where F0 is a healthy liver and F4 is cirrhosis. You are probably F1 or F2. The test is like having an ultrasound quick and painless. Your doctor could also do a biopsy if there is not a FibroScan unit within driving distance.

I had a biopsy twenty years ago and it is also painless so don't worry if your doc decides to order a biopsy because there is not a FibroScan unit close by. Basically the doctor numbs your skin and does a punch biopsy by inserting a needle into your liver and taking a small tissue sample to test. It sounds worse than it is, trust me. Not a big deal at all.

But I bet you get a FibroScan instead. The problem is the machines are expensive and not all hospitals have them yet.

Karyl · Veteran Member

Hi Doglover! I just finished an 8 week course of treatment with Harvoni. The virus now is undetected. I had the dragon for over 45 yrs during which I lived my life normally which included drinking at parties, on the weekend and wine after work. Not all the time but socially. When I had my tests done, I was surprised my fibroscan showed very minimal damage and my viral load was low enough that I didn't have to go 12 weeks with it. Don't be scared. Take all the tests and do what your doctor said and listen to all the gurus on this board. You have a family here.

Doglover32 · Member

Thanks again guys. Im just really struggling with the fact that Ive let this go for so long, (14 or so years) Im going to get on top of it now but Im so concerned Im going to go to the docs and theyre going to tell me that I have Cirrhosis or that my liver is shot. I know I need to get over it and do it, its just extremely hard for me right now. If I did have cirhossis would my symptoms be more severe? I was last tested 3 years ago and my ALT/AST was slightly high when i went in and I had A low viral load. I came back 2 months later after taking some time off of drinking and they had returned to normal. I Am working on getting paperwork for my exact numbers. Have you guys been in touch with people in similar situations? Im worried theyre going to tell me Ive already really damaged my liver and from what i read cirrhosis is irreversible, which means I will probably lead a short life. I hate To sound dramatic here, Im just really trying to get my arms around this and gain some perspective.

Observer · Guru

Give up booze !!!! if you havent already. I know its hard when booze is the fabric of your social life but you do not have a choice in the matter.

I was always the very popular designated driver when I was partying but not drinking. It actually can be quite interesting to be around drinkers while sober and remember, there are lots of people that give up drinking for their health, or for AA.

The liver has to process and filter everything you eat, drink, touch and breathe so if yours is damaged from HCV, you have to help and love your liver.

5-1-18 · Guru

welcome doglover.

i was scared to start tx but with so much success in with the daa's i went ahead... only a few times i was thinking "what have i done"

now 5 mo. post tx i'm feeling pretty good; i'd say tired is my main complaint, but at 66 so is everyone else i know ,

plus my sinusitis makes my life worse than the harvoni did i think cry cry

good luck and i hope things go easy for you

lamassu · Senior Member

Hi again Doglover,

No need to be scared your Hep C can be cured easily now. You have not told us much yet but we are here to help. You are going to have to see a gastroenterologist (a physician who specializes in treating Hep C and liver disease) and the first thing he or she is going to tell you is stop drinking so you may as well do that now and get that out of the way. If your friends don't understand get new friends.

I am not being facetious, you can be cured of your Hep C in eight to twelve weeks taking one of the new drugs like Mavyret or Epclusa. Your liver doc will decide which is best for you after you have had the necessary tests, which take time, so the earlier you start the quicker you get cured and get on with the rest of your life. Curing Hep C is routine now, that could not be said even five years ago so dive in and get started! You will get all the support you can take here:)

Cheddy · Moderator

Of course you are scared! We know what that's like.

First of all, you're about to get a lot of insistance to give up drinking. It's challenging to make that change when social drinking is such a part of our social fabric., but there are ways around it and you will be better for it. Some docs won't treat if you are consuming alcohol or otherwise taxing your liver. Nobody should consume alcohol during treatment, for sure.

I would be the first to applaud your fitness enthusiasm BUT you may have to cut back on exercise. Your body is telling you something. It likely needs more recovery time. Listen up and rest when you need to, and don't beat yourself for doing less right now.

As for depression, it's tricky. There are many things that can suppress our moods, and HCV is one of them. Often people are diagnosed with depression before they know they have HCV. Either way, it can be treated.

There is not much more that we can tell you without knowing more about you. Please answer the questions below. You can do most of that by going to your profile and filling in the signature line.

ABOVE ALL, GET TREATED. GET CURED. You'll be glad you did.

-- Edited by Cheddy on Tuesday 27th of November 2018 11:07:56 AM

Doglover32 · Member

Hi everyone, Thank you all so much for your optimistic words. You have no idea how helpful it is to hear some of that. I am Working on finding my paperwork from my liver tests that were done a few years back and will post as soon as I do. Just to clarify, there are certainly some days where I do Feel very very malaise and the gym is a struggle but I still Manage 2-4x a week and I do roughly an hour of weight training and 30 min of cardio. Other days I feel Fine. Sometimes I just Have an overall weakness and force myself in there. Im not sure if it is depression from worrying that I have done so much damage to myself, or the disease itself. When you speak of fatigue or excercise resistance, is this what youre referring to? The days I feel it most are after weekends (where I may Have been drinking and have been up late) so Im sure my liver is fighting through some of that? Im just not sure. You guys have been so helpful and Im really glad I found this. Thank you ahead of time for any insight

Cheddy · Moderator

Welcome doglover (me too).

Yep, it's pretty scary to find out that you have HCV. It's panicking, in fact, but you couldn't be facing it at a better time. The new treatments are so effective and far more powerful than the old ones.

If you're looking for hope, you've come to the right place. There is so much knowledge, heart, and experience on this forum. It's so helpful to learn from people who have actually been through it. Count on experienced support.

You have been given a lot of good information below, already. I really can't add much, accept my own trust that you will be cured and go on to have a better, Hep free life.

Welcome aboard.

Cheddy (cat lover, too)

-- Edited by Cheddy on Tuesday 27th of November 2018 10:39:42 AM

lamassu · Senior Member

Doglover,

Welcome to the forum! You have already received some good advice and from your lifestyle and age I seriously doubt your HCV has progressed very far along. You would be experiencing fatigue and intolerance to exercise, but there are the baseline tests already mentioned that any specialist would run before starting treatment, and your insurance company would probably require to authorize payment for treatment.

When you have HCV drinking is like pouring gasoline on a fire so make the decision to stop drinking now. You cannot drink and take antiviral medications at the same time, and your treating physician might require you to be alcohol free for a month or so before starting treatment. There is some controversy about whether drinking (no more than two drinks a week) is advisable after your disease is cured but I believe most specialists will tell you to abstain from alcohol for the rest of your life, as any drinking may impair the ability of your liver to heal from the disease after the virus is gone. And face it, your days of having a six pack or two on the weekends are over so just commit to an alcohol free lifestyle now.

I assume you are already seeing a gastroenterologist? While an internist or general practitioner could prescribe treatment for you I strongly advise that you see a liver specialist for treatment. You really want to be supervised by a gastroenterologist who has advanced training in treating liver disease.

With the new direct acting antiviral drugs like Mavyret or Epclusa you should be cured in eight to twelve weeks. These new drugs are powerful and you might experience some side effects like fatigue during treatment, or may not have side effects at all. Congratulations on taking the first steps to curing your Hepatitis C!

Tig · Admin

Hey Dog,

Welcome to the forum! I removed those two posts that caused the difficulty, no worries.

You mentioned knowing about your HCV status for several years. How was that determined? Have you ever had the PCR viral load testing performed? That would be the next thing to have done. That will determine whether you have an active (chronic) form of the disease. 20-25% of people can beat the virus on their own. There’s always that possibility. Your age, health and physical conditioning are in your favor.

I recommend getting your doctor to run those additional tests as soon as possible. There’s no good reason to worry needlessly, it only serves to stress you out. We can all relate to your concern and also know that this virus is easily treated, with close to 100% effectiveness. The side effects are minimal as well. It’s a great time to treat.

5-1-18 · Guru

welcome doglover.

hcv can be cured so we are living in good times.

Observer · Guru

RE: New and Scared. Sorry about error in last post.

Canuck · Guru

Hi doglover,

Welcome here. Glad to hear you have decided to go ahead and get rid of this hep c.

The right thing to do.

Many good things are in your favour, youth, feeling not too bad, working/coping, you sound fit with the description you gave of your activities, very good that your last liver "levels" seemed normal, and, that you possess the awareness, knowledge and power to now go ahead and get this health robbing virus out of your body. These are all important, valuable things which will assist you in getting yourself all cured up more easily. All positive optimistic things to work with and from for starting your treatment.

Good you have been getting your liver "levels" checked. What lab tests have they been doing and what were the results?

Will it be a problem to not drink? That would be something to discuss and figure out with your doc, if you think you will not be able to stop drinking - everyone is told to stop drinking (on principal, and for good reasons) regardless of their liver condition, while they are on treatment.

So, have you actually been to the doc to formally request treatment, if so, how far along in the pre-treatment work-up/assessment are you?? There will labs, and likely an abdominal ultrasound (U/S), and a fibroscan (labs and/or the fibroscan can give you a Fscore, liver stiffness/or fibrosis level). They will determine your genotype (GT), if that is not already known - and your GT will have a bearing on which treatment drug will be best for you. Your viral load (VL) level might also have a bearing on length of treatment, if very low you might get an 8 week treatment versus a 12 week one. Generally speaking, we do not often see young people with badly compromised, highly cirrhotic livers that could limit treatment choices, so that is in your favour as well. So far you have not painted a picture of someone who has been exhibiting signs of a poorly compensating liver.

In this era of these new, easily tolerated, and highly effective treatment drugs, and given all the positives you have mentioned, you can not only hope for but EXPECT to be easily cured of this virus. (Lots of us here have been in your shoes, just know that we stand here now, cured and freed from this virus - you will not regret it).

Let us know where you are at in the work-up process. C.

Doglover32 · Member

New and Scared

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