SO SCARED

[catmagic0406]

Hi everyone.  I entered this forum yesterday, and right now I am so scared - SO SCARED.  Gen. 1, 43 years w/virus.  Was ready to start triple tx and picked up my CT scan report on my own and I have steatosis.  Cannot see doc. until May 8.  I have BEGGED his office to no avail to get me in NOW.  I might go in there whatever day he is there next week - maybe Tuesday and sit there until I can see him because I truly cannot take this fear and not knowing if I am going to DIE soon with the double whammy of HCV and steatosis.  I was so optimistic - so ready to start tx.  It all depended on CT scan results.  I wasn't worried.  What a joke on me.  It was worse than I could have imagined.  I want to treat now - now.  What have I got to lose?  I just need a boost here - some words of encouragement.  This is a nightmare... not knowing.  Yes, I was and want to see Dr. Gish or one of his group.  But I cannot stand waiting.  I cannot.  I will call my psych. Monday - already on anti-anxiety meds but this is way beyond what they can ease.

Sorry for the craziness.  I can FEEL the ache in my liver.  That is what is the most frightening thing of all.  Has ANYONE out there experienced all this?

[libzo2]

= : )

[catmagic0406]

These wonderful people on this forum have done so much to help me calm down.  I was a basket case last Friday as everyone here saw.  Can u say meltdown?  These folks have learned how to chill out and help others to do the same.  I had no discomfort either until recently, and I've had this thing in my liver for over 40 years.  My only symptom was 10 years ago when I was totally exhausted all the time.  I thought I had mono - yeah, right.  But my biopsy was as good as it could be considering I have Hep C.  But that was 10 years ago.  I know there have been changes since then.  Steatosis for one.  But know what?  Thanks to this forum, I am doing okay now.  I don't know what's to come either - treatment for sure - but I am no longer freaking out.  I can deal with it - we all can.  We just need each other.  Our family etc. can help support us, but those who are in the same boat truly can understand.

[ohiojim]

Thanks Advocate1955. I'm new to all this myself and it helps me to hear others being a liitle bit laid back. I just found out I need treatment for my Hcv. Been diagnosed 28 years with mild irritation with no discomfort. The last biopsy shows moderate irritation with some cirrhosis. Doc says I need treated. Haven't seen anyone yet. My endoscopist is working paperwork up tomorrow to get me to the guys treating me. Don't know a whole lot of anything about whats to come but your calming advice to this guy helped me. Look forward to more posts. Thanks again, Jim

[catmagic0406]

Wow, great comment.  Being prior military, I can relate to that.  Anyone who can go through boot camp (I enlisted with a MA - had no clue what I was doing - just wanted to travel - ha ha) at the age of 31 can do just about anything.  I thought that would break me, mentally more than anything else as I was in fantastic physical shape way back then.

We all know "that which does not kill me makes me stronger."

[catmagic0406]

No reiki in this neck of the woods (except what I know myself - lol - and I do have some knowledge) ~ but I do have my Buddhist practices, that include some wonderful meditation.  I just have to get immersed in them again.  And I will.  And thanks thanks thanks.

[catmagic0406]

Thanks ~ For sure, I HAVE to move forward and make a plan instead of sitting around crying.  And I have.  I spoke to Dr. Gish's office yesterday and can get in to see him maybe in June (he's only in Vegas 2 days a month) if my gastro. will send him a referral letter VERY soon.  Time is of the essence  ~ otherwise, it will be July.  I see the current gastro a week from today, and he better not impede this.  I don't know him well at all, having seen him only twice.  But he has to uphold the Oath, so he has to allow me the best treatment I can get.  And it's not from him.  Not with the new wrinkle especially.

I am a recovering alcoholic, yes.  But I've been sober for 24 years, so I'm not fighting with that one anymore - just being aware.  The smoking thing ~ that's new and that's tough. But sure can't smoke with tx, right?  I do have a spiritual practice, Buddhism ~ in fact, I'm quite "deep" in it; however, when I found out I had steanosis (not when I found out I had Hep C - that was 10 years ago and all reports were great until now) I stopped my practices and went off the deep end.  So that is my refuge (and anyone who is a Buddhist knows about that), and I am back to doing what I do in that regard.  It's a wonderful way to take my mind off the problem(s).

One reason I didn't treat before this was my psychological issues.  My then psychiatrist said "NO WAY - not unless your life depends on it."  Well, now it does.  So yes, I will need to have my meds adjusted.  Another reason to see a hepatologist.  My current gastro. doubtfully has a full grip on that issue, and that issue, as you said, can be life threatening on tx.  My then hepatologist back when I was diagnosed told me, after hearing what my shrink said, that I would likely walk out in front of a bus if I had treatment.

So this is scary too now.  My husband is home all the time, so he's going to have to watch me like a hawk.  But he does anyway, so that's nothing new.  lol.  

[rambleon40]

Perhaps a few sessions of reiki with a good practitioner would do you well, for the stress and fear.  Please also consider reading "Falling Upward" or most anything by Richard Rohr.

[Violetblonde]

In watching a T.V. episode on the Navy Seals, one guy said that the success in making it to the top level of Seals is 90% attitude and 10% physical.  So scared,  be positive.  Everything will be ok.  This is just part of what we who have Hep. C have to go through.  You will on top of this soon.  Lots of prayers, Violetblonde

[ceanothus]

Hey Cebean, you are doing a great job so far, you are really moving in the direction of being in control of your emotions and your health. There is always an initial panic reaction, we all know and understand that. You have a hell of a lot on your plate to deal with right now – from reading your posts it sounds like you are a recovering alcoholic (guessing that from your reference to AA meetings), you just quit a long term smoking habit a month ago, and you are just coming to terms with a scary diagnosis as well. Whew, no wonder you freaked out! I think the suggestion someone made of trying to pick up a new meditation/relaxation technique is an excellent one, and so is the idea of doing a little extra work with your psychiatrist/therapist to help prepare yoursel for tx. Your hepatologist may require this anyway, so doing it in advance may help speed up getting your tx underway  I have a history of depressive disorder and have been on an AD for most of the last 15 years. When I was arranging my current tx this was a very big issue to my hepatologist, as the tx can cause significant depression and sometimes lead to suicide. There are also problems with many AD's interacting badly with the protease inhibitors, or at least with Incivek, so before I could start tx I had to go back to my AD treating physician and get my Ad switched from zoloft to one that was safe with Incivek (cymbalta in my case) and then go through all the initial dose adjustment period and get stabile again before I was allowed to begin tx. Your hepatologist may not be as fixated on that issue as mine was, but it wouldn't hurt to be prepared for it. From all the informative posts here it really sounds like your steatosis will probably not be an obstacle to tx. Nobody here knows for sure of course, but I think there is enough info to allow yourself at least partial relief from that worry. I will pm you in a minute with a little advise about the sugar thing - its sort of off-topic so I don't want to post it here. Take care, and keep on building up your strength!
-Saelon

[catmagic0406]

Dawn, I may have inadvertently snipped at you too about fatty liver being serious.  I can see now that I DID come across as a know it all.  That said, it can be serious esp. when it's not caused by alcohol, obesity or Gen. 3.  It means the virus has caused it.  So....... I hope I can treat.  I pray I can treat.  I think, but know nothing, that Invicek may not be the one due to the fat thing.  And as of a couple weeks ago that was the only tx that my insurance approved.  But things can change - my doctor could definitely get involved with that.

I am sorry for my snotty response.  No excuses.  I will do better from now on.

[catmagic0406]

Hi ~ I just went back and read your first post to me.  There was nothing at all in it that would have set me off - nothing.  In my return post I was just saying that I'm a skinny ole thing - that the FL isn't because I'm obese.  Maybe I said it too strongly.  

ALL  ~~ I am not reading or googling anymore.  I depend on YOU for information (and the doctors).  I googled myself into a death sentence - had myself strung up on the gallows pole next week.

Side note~ the confusing part of that over-googling was finding the FL is specific to Gen 3 and did resolved with tx with that genotype.  Since I am 1a - that's what scared me.  But no more self diagnosing and preparing for my cremation.  I will get a grip on myself and chill out.  I think my life depends on doing that.  (But I have to have a coke a day - lol -  I mean, I gave up cigs a month ago so really need that one little "vice" - when doc. says to quit that I will).

I need all of you.  I cannot stress that enough.  As we learn in AA, "Take what you need and leave the rest."  Well, so far I have needed every single word from all of you.  It sure wasn't that way in AA.  This forum is powerful stuff.

[catmagic0406]

Oh no ~ oh no ~ this is a misunderstanding between us.  Please - I was not offended, and however I came across I did not meant to be that way.  The last thing I want to do here is ruffle feathers or appear as... well, as I guess I did toward you.  Please forgive me if I snapped somehow.  It was not intentional.  I promise.

I realize now that what I came here for at this point is support.  Until I get a NEW biopsy I won't know much except the "fatty liver infiltration" on the CT report.  Until whatever test is done, if not the biopsy, to determine the extent of the steatosis, I won't know how that is going to affect me/tx.  Until I cease all this freaking out, I am making it less likely that I will even get tx.  I already have emotional problems, as is obvious; I take meds that are not working so well now.  I have to be as calm as anyone can be when I see the doc. next week.

Any idea of going to Dr. Gish was a knee jerk reaction.  I have got to be patient, and that has always been the most difficult thing for me to to - always.  If I lived in Las Vegas, I would have gone there already.  For me, 100 miles is a long drive.  Panic disorder - driving phobia.

I read every single post with gratitude.  This is the only place in my 10 years since diagnosis where I have people who understand what this is like.  To me, you didn't seem like a know-it-all, and if I gave that impression in my response, I am really sorry.  I can't believe I've done that.  I am a scared little girl right now, 65 year old little girl.

I need all the friends I can get, so if I come across to anyone in a way that seems to be personally snippy, please forgive me.  

EVERYONE, please help me in any way you can.  I will read everything and probably it's best, in my condition, to keep any responses brief so I don't come across in a negative way to someone personally.  When I read "ouch" I knew I had offended.  That is the last thing I want to do with any of you.  I will come back with a report after I see the doc. on May 8.  I will meditate, read (fiction - lol), do other things to calm down.  

Idyllic - I am so sorry.

Everyone - please keep holding me up and offering advice.  I am listening.    

Also, I realized that I had better get a grip on my emotions fast.  Someone mentioned that here.  If I go back to the doctor and present as an emotional train wreck, even though I am, he's not going to allow tx.  

I need to start off on a new foot here too.  I want ALL of you to know that I need you.  I've known for 10 years I had this virus.  I thought I was immortal it seems.  I refused tx and denied that Hep C was serious and progressive, even if slowly.  But 43 years now since I contracted it, so that's a long time.

I actually denied in my mind that I had it.  Only when that last CT scan showed steatosis did reality crash down on my head.  Now I know that it's really happening.  And it was a shock.  I presented as a raving lunatic.  Folks, I was and am simply scared... to death.  It's like I acted here like normal people would when they first find out about it.  And that's because it might as well have been that way - it's when I first believed it.

[summer7799]

Dont worry, I also have hep C and fatty liver. Not sure if its caused from the virus or not. Im a healthy eater and exercise, so hopefully after treatment it will all go away :)

[jpinthekeys]

I just thought I would add my limited knowledge . My sonogram that I had several months back showed some fatty tissue around the edge of my liver. The liver is one of those amazing organs that will repair its self. However that cant occur with HCV active in the body. I went through peg-intron treatment in 2007 and was a relapser, i have genotype 1a the most difficult to get a SVR. Afterwords I vowed I would try again when a new treatment hit the market, meanwhile I changed my diet to help slow the progression of the disease. I cut out hard protien to the best of my ability,getting my protien from dairy and nut and beans, as well as decreasing carbs and only taking essential medications for my depression and advil for aches ad absolutly no alcohol, and I soon felt much better and my liver did not have to work as hard to process my intake of foods and meds as every thing had to go though your liver to process it into useable product. Evidenty they use the sonograms to access the amount of damage. The good news is the triple teatment takes the SVR up to 87% in a 6 month course of treatment versus the44% for the old peg-intron only tratment. I moved recently to charlotte county in Florida and just found out
that they are starting treatment for uninsured like myself. It is the only county in FL that is doing this. Other countys may follow if this model is sussesful. I know it is going to be hell but I am glad it is just 4 weeks with telapriver and the balance with pegintron for 6 month total. It is a god send as this treatment costs 36 grand a month, yes 36 grand at least for the first month. If the treatment is sucsesfull then you should have no worries as the liver will regenerate, from what i know if it is stage 4 scirrosis, excuse my spelling--the liver is really beyond repair and a transplant might be nessasary.

[Idyllic]

Ouch. I am so sorry for my pompous post. I in no way meant to offend you. You were so freaked out I felt like I wanted to offer some kind of tips or support. That is always a no no when one has no insight or experience about a medical condition. Even at the time I was writing I was doubting the wisdom of what I was saying given I had no experience.

That is why I supplied the link so you could see the etiology of Steatosis since I truly was just spit balling.

Then I read an earlier post of yours and realized you asked a similar question. That is when I realized you weren't asking for medical advice in this particular post: you wanted support.

I would be as freaked as you and hounding my doctor's office too. I am actually impressed you got an appointment as soon as you did though I know it must feel like forever.

Anyway, listen: I really don't want to start off on the wrong foot and I was out of line for being a know-it-all. I hope this all works out and you are able to treat your HCV and that you post your progress and what the doctor says.

[Dee1956]

Hi you can do a search for fatty liver with hcv.  I just did a search and found a reply that Hector SF wrote back in January, hope this helps
"The published data suggest that: (1) hepatic steatosis is present in about 50% of patients with HCV infection; (2) the association of HCV and steatosis is genotype-specific; (3) steatosis contributes to the progression of fibrosis in HCV-related liver disease; (4) NAFLD adversely affects the virologic response rates to anti-HCV therapy; and (5) the concomitant presence of NAFLD and HCV infection possibly leads to an increased risk of hepatocellular carcinoma. This all makes sense because there is overlap between the risk factors for progression of fibrosis in HCV-related liver disease and in NAFLD; development of cirrhosis is accelerated by male sex, excess alcohol intake, HIV coinfection, type 2 diabetes mellitus, and obesity."

From "Can Fatty Liver Disease Affect the Prognosis in Patients Who Have Concomitant Chronic Hepatitis C?"
William F. Balistreri, MD 2006

FATTY LIVER

http://emedicine.medscape.com/article/175472-overview#showall

"Fatty liver disease can range from fatty liver alone (steatosis) to fatty liver associated with inflammation (steatohepatitis). This condition can occur with the use of alcohol (alcohol-related fatty liver) or in the absence of alcohol (nonalcoholic fatty liver disease [NAFLD]).

Fatty liver disease is now the most common cause for elevated liver function tests in the United States. This is mainly due to the ongoing obesity epidemic in the United States.

Fatty liver can be associated with the use of alcohol. This may occur with as little as 10 oz of alcohol ingested per week.
**** Identical lesions also can be caused by other diseases or toxins.****

If steatohepatitis is present but a history of alcohol use is not, the condition is termed nonalcoholic steatohepatitis (NASH). Fatty change in the liver results from excessive accumulation of lipids within hepatocytes. Simple fatty liver is believed to be benign, but NASH can progress to cirrhosis and can be associated with hepatocellular carcinoma. The main risk factors for simple fatty liver (NAFLD) and NASH are obesity, diabetes, high triglyceride levels, or a high fat diet.

Fatty liver is the accumulation of triglycerides and other fats in the liver cells. In some patients, this may be accompanied by hepatic inflammation and liver cell death (steatohepatitis).

Potential pathophysiological mechanisms include the following: (1) decreased mitochondrial fatty acid beta-oxidation, (2) increased endogenous fatty acid synthesis or enhanced delivery of fatty acids to the liver, and (3) deficient incorporation or export of triglycerides as very low-density lipoprotein.

United States

Steatosis affects approximately 25-35% of the general population. Steatohepatitis may be related to alcohol-induced hepatic damage or may be unrelated to alcohol (ie, NASH). NASH has been detected in 1.2-9% of patients undergoing routine liver biopsy. NAFLD is found in over 80% of patients who are obese. Over 50% of patients undergoing bariatric surgery have NASH."

[Dee1956]

Hello I am very sorry for the panic and anxiety you are feeling.  I have been there myself, during tx I was so anxious and then my medicine was not approved and I got worse.  I came on here looking for help and I did receive it.  At the same time someone advised me to be careful in my communications with the doctor and the office.  If they think you are too anxious or too panicky they can refuse to treat you until you get yourself under control.  While I understand completely the feeling of panic as I experienced it while on treatment, you have received very good advice here.  If you think you can't control it perhaps your psych doctor can help you.  Many people without HCV have fatty liver; while it is not a good thing there are some steps you can take to help yourself.  As you said, sugar is a problem for you.  Even though you are skinny you  have a fatty liver which to me mean that you are not eating right.  To me, what you could do right away is to cut back on sugar and carbs, drink lots of water and talk to your psych to see if there is some help there.  What you are experiencing is very scary, especially if you have just been diagnosed with HCV and then the fatty liver.  
I wish you the best.

[Drgnfly4211]

Please please please, don't be scared!  I was too after I read what everyone wrote but I am on week 5 and doing great.  I have a couple of days where I am a little week after my shot but I am getting better each week.  I am working full time, going to school full time and raising a family.  Remember each person is different and your body will not react like anyone elses.  Drink alot .... you will be fine!!!

[bumbledeb]

I just found this forum today..  but alll I want to stress to ;you is that fear is not what you want to entertain ...naturally so.. but just try to stay in the moment , the day, and take time to really count your blessings. I don't mean to take this lightly at all... it will help you ontil you get to the  Dr. and get a plan.. and that to may take some time... just try not to figure things out on your own.. PATIENCE  is really a virtue.. and it will be before you... you can do it.... ... I have had hep c.. treated, cleared.. my husband has pcs. of the liver and was on transplant list.. I can relate .. God Bless and just keep in the focus of what you have before you.. each of us is unique to every situation... ok ?  I hope to help you... debi

[BoceprevirGal]

Ahh, I know exactly how you feel.  I thought everything was fine with my liver, because I had a normal UltraSound done last year, and I have been clean/sober for 13 yrs, and a health-nut, who exercises continuously.
   But last october, I tried to get into a Research Study, so they did all these extra labs, more then what they do at my yearly physical, and a test called a FibroSure test.
   The Research Study Nurse casually called me inot the office, and told me that I was discluded from The Study, because my enzymes were to elevated (less than 400 was the cut off point) and also....that my FibroSure test showed I had Stage 4 cirrhosis, so there was no need for me to have a biopsy.
   They didn't give ma a referral, to a Hepatitis Treatment Doctor, either.
I remembe my husband crying, so I said, "is cirrhosis dangerous?" (I've never been sick before) and he said "yes"
   I went home, and began googling and googling, looking for some kind of hope. I stopped sleeping, I developed these huge dark circles, which I still have, and became completely sick (probably from popping all thes Milk Thistle capsules, which constipated me horribly)
  I felt completely alone, but then I found a Doctor, who treated, and she had a biopsy ordered. She wasn't hopeful, because I hade low platelets, which usually indicate cirrhosis, but my biopsy came back great, I was only at Stage 2 fibrosis.
   I started treatment, on feb 7th,  the triple Tx, with Victrelis (Boceprevir) and my virus went undectable after 4 weeks, before I even started in on the Victrelis ( there is a four week lead in, with just Interferon shots, and Ribavirin pills, 1,200 mgs a day). Also, all my enzymes went back into the normal range. So this treatment is very hopeful, and thank goodness we finally have these new Protease Inhibitors, just in time for us!!
  My husband and my best-friend also had Ultra-sounds, at the same time as me, (they also have hep c) and they both had "fatty-liver". It really hurts me, to see them still having "a glass of wine or two", like nothing is wrong with them...grrr!
   May 8th is a week and a half away, but showing up at your Docs office, waiting for a cancelation, isn't unreasonable, because of the anxiety this is causing you~
   Stay hopeful! xoxo

[orphanedhawk]

I almost died from cirrhosis, after failing hep C treatment. I never, ever felt my liver. I had other symptoms but absolutely no liver pain.
They removed my gall bladder during my liver transplant.
Five weeks ago I successfully completed hep C treatment.

From my experience with treatment, your biggest challenge is getting a hold of your emotions.
What do you mean you simply can not wait ? Are you an adult ? Get a hold of yourself.  
Despite my condition, it liver disease moves slowly. I was bloated up with ascites, had End Stage Liver Disease ( decompensated cirrhosis) and didn't have a transplant for almost 5 years.
Dr. Gish is an excellent doctor.

While waiting for your appointment, why don't you learn some techniques for calming yourself. Deep breathing exercises, yoga, meditation all can be real life savers for getting your run-away emotions under control.

[catmagic0406]

Wise words.  Wise words.  Now I realize that no matter how much I want to "get on with it" as far as tx, there are certain things that have to be done, things you mentioned.  I had best take a back seat and enjoy what I DO have that is good - and there is a lot of that - and actually I have to stop all the googling.  It's made me crazy.  The stuff is old stuff for the most part, and I have read nothing that eases my anxiety.  FOR SURE, all this emotional stuff comes from not knowing, from not speaking to a doctor about the CT scan findings.  I just don't know how to change my diet to make this steatosis ease up - well, maybe I do since I live on sweets.

I won't be demanding anything.  I have to let the professionals be in charge of this.  That's not my nature - to let others have the reins - but with this, if I don't I'll be so sick mentally that tx will be ruled out by them until I calm down.  Wow, that was a revelation - it's true.

[catmagic0406]

I totally believe that the new triple tx will cure the hep.  I've got that going for me.  Positive attitude - always been an issue for me (it showed here, didn't it?).  And I know how important that is.  I've seen people beat cancer because of their attitude toward it not because of the chemo, etc.

[catmagic0406]

Dawn, love ya, but fatty liver WITH Hep C IS serious.  It causes faster progression of the virus.  I will be treating as soon as I see the doctor.  I will demand (and I'm good at that) a biopsy ASAP - results ASAP even if I stay in the hospital until the doctor shows up - then order the drugs and get on with it.   xoxoxoxoxooxo