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?

[ceanothus]

Aw Cebean, I'm so sorry to here this, and especially how upset you are. I wish I could tell you how steatosis affects treatment, but I have no idea what the impact is. If I wasn't too tired now to stay awake I would try to google it for you, but I just can't right now. Maybe in the morning I can if you haven't already gotten good advice by then. We have so many very knowledgeable members on this forum, perhaps one of them will come along soon with some info for you. In the meantime try to keep your worries under some degree of control, and keep your spirits up. If I had to guess, I would guess you will still be able to treat the virus. I did read (on emedicine.medscape.com) that steatosis affects 25 - 35% of the general population, so if it was a treatment deal-killer I probably would have heard that somewhere, since it is so common. Many of us here on this forum have progressed to cirrhosis and are still able to go on triple tx with some additional precautions. I hope you will still be able to treat and get rid of the virus.

[Idyllic]

Doesn't steatosis just mean fatty liver? Usually there is a qualifying word before it like moderate, mild or whatever.

I understand the condition it is pretty common in HCV.  Just based on what I have gathered here on the forum, the first line of defense is often a lifestyle change. Do you happen to know what your BMI is? Are you obese? If not, it may not matter since I believe where you store fat has something to do with it. Eating habits are a real key with management though I honestly do not know if eating healthier improves the condition.

Either way, you may want to eliminate processed sugars, junk food, candy (empty carbs) and maybe even red meat and perhaps other fats from your diet. Alcohol may be a factor but I have seen folks on the forum who have it who don't drink. For some reason diet has something to do with it. Other than that I am not sure if your cholesterol levels matter or what. <= This is all based on what I have read about in the past but someone with more expertise will likely weigh in soon.

There are actually lots of causes and factors as you will see if you arrow down the page in this link:
http://www.patient.co.uk/doctor/Steatohepatitis-and-Steatosis-%28Fatty-Liver%29.htm


Hang in there and don't give up hope!!

[Dawn703]

Idyllic is right steatosis is just fatty liver and I don't see how that will impact your treatment or your immediate life. I know quite a few people, of the same family, who have fatty livers and has no affect on their lives whatsoever. I know they don't have HCV, and I don't know all of your details. Have you had a biopsy, are you recently diagnosed, etc...? As the others said someone more knowledgeable will chime in soon. But in the mean time, take a deep breath and not worry so much. I know your scared and this is easier said than done, but May 8 is really not that long and they too have your records and if they felt that they need to do something before that they would. I have a crappy Dr. as far as I'm concerned, but when an ultrasound showed an abnormality in my pancreas. I was in for an MRI the next day. Good luck.

[copyman]

Slow down, you are NOT going to die!
You can still treat HCV with fatty liver and with proper diet the fatty liver can be reversed. Heck I bet half America has some sort of fatty liver!

You wrote "It was worse than I could have imagined". This is not that bad, what could of been worse is CT scan showing a liver mass / cancer. So be thankful that fatty liver is all it showed.

Move forward with treatment, watch diet and exercise. Also keep a positive attitude.

Best of luck

[uncledudeness]

i was also diagnosed with steatosis. with a proper diet and exercise it will help. but the underlying objective is to get rid of the hep C, and treatment can do that for you...it's important to really believe that it will. chill out and wait for treatment; it will happen and you will beat it....good luck

[AKHepper]

wow! you need to calm down, you're not gonna die this week. This is a slow acting disease and treatments are available.

I had a biopsy in 2000 that showed steatosis, then one last October that showed NO signs of steatosis. What did I do different? Nothing, other than stopped drinking like a fish.

[Ironpony]

That awful ache in your side I get to. It was was worse during the acute phase...but I have definitey felt it throughout the years. I am 0/0 with no fatty liver and my alt ast were only high for about two weeks when I was infected. I still have the aches through tx, but they have meant nothing in my case. So you do not necessarily have to panic every time you feel it.
Also the liver itself cannot feel pain. Other things surrounding it like the gallbkadder could be making you feel like that.

Best wishes,
Laura

[belle19]

i want to welcome you to this forum.  a also want you to listen to what the others have told you and try to calm down.  you're not as bad off as you think.  there are a lot of informative people here that can offer advice.  they've been thru it.  we're like a big family here, always willing help.  take care.  belle

[Advocate1955]

Generally speaking, HCV causes liver damage very slowly, sometimes over many decades.  Fatty liver is fairly common and does not impede you from being able to treat your HCV.  My understanding from my husband's hepatologist is that fatty liver makes your liver have to work harder, and combined with HCV, it has to work even harder.  So, treating your HCV will take a way a big portion of the burden on your liver.  Losing weight, if you are overweight, or changing your diet (reducing fats, eating more fresh fruits/veggies) will also ease some of the burden on your liver.  May 8 is not far away, and you're lucky to get in so quickly.  Keep in mind that treating HCV is a process.  There are many things that need to be done before your hepatologist will start your HCV treatment.  I know that you're anxious to start right away, but it just doesn't happen that way.  There may be vaccines that you need.  There may be tests that need to be run to make sure you're healthy enough for treatment.  If you are already under a psychiatrist's care for anxiety or depression, it will be important for your hepatologist to know that and to be in contact with your psychiatrist.  It takes time to determine the best course of treatment, get insurance to authorize medications, and get delivery of medications set up, so relax.  It is not a fast start or a fast fix.  It is a process, and it takes some time.  Do not cancel your May 8 appointment in hopes of finding someone who will move more quickly.  Slow down, slow your brain down.  I think you may be experiencing anxiety due to fear of the unknown.  Perhaps gathering more information (research, look on websites, post on this forum, connect with others who have HCV) will help to reduce that anxiety.
Advocate1955

[catmagic0406]

I am skinny as a rail.  WAY skinny.  TOO skinny.  So it's not being obese.  I haven't had any alcohol for 24 years, so it's not that.  It's the virus that has caused this.

The CT scan report, at the bottom under IMPRESION, says "FATTY INFILTRATION OF THE LIVER" ~ that's easy to understand.  Up in the detailed findings: "Decreased attenuation is seen throughout the hepatic parenchyma, consistent with steatosis."

I've spent probably 15 hours since Friday googling this.  All I get is VERY scary stuff for a Gen1.  I will treat anyway.  I have nothing to lose now.

[catmagic0406]

THANK YOU ALL.  A couple things more ~ I have no gall bladder; it was removed in 1992.  I realize the liver itself cannot feel pain, so the pain must be my liver enlarging, pushing on something, FATTY, whatever.  I eat almost ZERO fat.  My "thing" is sugar.  I have no fat to cut out of my diet.  I smoked for 40 years - so that def. could have contributed to this although my PREVIOUS hep doctors told me that smoking did not directly impact liver disease.  What a bunch of crap that was.

I am overdue for a biopsy.  Last when was in 2002 when diagnosed.  Again all these not so smart docs have told me I didn't need one until this year - well, yeah, now there will be one this year for sure.  But I told them starting in 2007 that I really thought, due to my age when then was 60, that a biopsy should be done.  They ignored me.  I was right.  My biopsy in 2002 was Grade 1, Stage 0.  We all know that 10 years later it's going to be a different story.

My psych. knows all about this - and my current doc. knows that I see her - that's part of the treatment as you guys know.  As you can see, I am going to need a LOT of anti-depressant/anxiety meds.  I am on them now, but they can't hold this down.  I will call my psych. tomorrow about this weekend's meltdown.  I am a very impatient person.  The May 8 date for seeing the doc (who will soon be former doc) was at my insistence.  He ordered the CT scan in early mid April and had me coming back in five weeks.  No way.

I have to calm down, and I will.  I'm sorry for the explosive rant, but all of you have been here I think.  I have known about the HCV for 10 years, it was progressing VERY slowly considering I contracted it in 1969, then all of a sudden - BOOM.  Double AFP number from a year ago (20.9 but still... double) and steatosis.  Knocked me to my knees in fear.

Thank GOD for this forum and all of you!

[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

[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]

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.

[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.

[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

[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

[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!!!

[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.

[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."

[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.

[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.

[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 :)

[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.