Reality Sets In

Good morning all,

I've done so much reading and now I don't think I have acute hep c as my dr has suggested. I think I have chronic hep c with severe liver disease. Instead of laying awake worrying myself into a frenzy, I'm researching diet changes that I can start immediately while waiting for my last test results. I think I have this because the symptom that could not be explained was my weight loss. I described it to my primary doctor as "wasting away." She said I was just panicking and weight loss was not associated with the hep c. True enough, I could not find that anywhere as a symptom, so it was still a mystery. Therefore, I did not discuss it with the Specialist when I saw him for the first time last week.

Tonight I was reading and ran across symptoms of severe liver disease. It talked about weight loss and loosing muscle. The muscle loss seems to describe what is going on with my body. It's kinda scary but I'm choosing not to be afraid. My butt is gone. I've always had a nice behind and now I have none. My thighs, have thinned out, my stomach. I'm a small woman as it is, so the weight loss has been very noticiable to everyone that knows me. I'm not skin and bones, but thinner. I currently weigh 133 - the lowest I dropped was 131 and now I just bounce between 131 - 136. My highest weight has been 153. I mean, it's not a bad weight for my height which is 5'1", but it is a significant drop. If I could be at this weight, it would not be unhealthy for me. The problem is that I dropped it in a very short period of time, like over the past 2 months. I dropped 5 lbs in one week.

Ok, you all may respond back like my doctor and tell me that I'm panicking. maybe I am. But I don't think so. I see know my body. For me, this drop is significant. I have a good appetite and eat. So it's not that I'm dropping because of loss of appetite.

Anyway, whatever the case may be, I'm keeping hope alive and will not be overtaken by fear. I'm a fighter! Whatever it is, I can and will handle it!  And So It Is!

[dperry10]

Maybe you have a hyper thyroid ?  did they test you for that ?   I have lost 102 lbs, but that has been during treatment,   only have 4 wks to go.  on 45 of 48 this week.  Your weight does not seem to be on the low side for your height.   You are about right.   Try not to worry about it, and have him do a Thyroid test on you.

[Andiamo1]

Severe liver disease has many other symptoms that you would experience before weight loss.  Perhaps you should find a good hepatologist at a major medical center and get a second opinion.

I wish you good luck and health.

[dperry10]

This is my 2nd time treating,   14 years ago, I was slow to respond, but long story, lost weight and after tx, gained my weight twice over.   I got up to as much as 274.   And developed diabetes, But was like 258 at starting tx this time, and lost 102 so far.   And the diabetes is gone.  Sugar is completely normal and all blood work looks fine, even had a c19 tumor test and every other test the doctor could think of, and a colonoscopy, found a few polyps and removed them.  Other than that, he could not find anything else.   Only 4 to go... have had to UND so far, and he will not test that again till 6 mos post.   So just sitting on the edge of my seat...   I do not want to gain this weight back, but afraid, will have to spend the big bucks to get rid of this skin.. LOL   And hope that I remain UND and SVR forever....  Its been a long hard road, and looking forward to a break, and will keep up with testing my blood from time to time to be sure.   But I know its from the meds, my losing this weight, as not much of an appetite, till lately.. But doctor was concerned over it as well.  I have lost so much I adjusted my riba myself, as once I got below 170..   I did not need 1200 a  day of Riba.  I will have some left over.     My Biopsy showed me at Stage 2 / grade 2  Genotype 1a

[Andiamo1]

Sounds like you are making lots of improvements.  Start exercising as soon as you feel well enough and the weight should stay off and even drop further.

Great work!  I hope I can do as well.

[FlGuy]

Of course you're panicking, and that's ok.  You have a disease that you don't understand and you don't have all the diagnostic results that will tell you exactly where you are.  And, until you do you are staying up late at night reading and researching and looking for answers.  You are trying to gain control over that which you have no control - yet.  
Until you have all the information for you and the doc's to make recommendations and decisions you will be peering into a dark hole with the bottom obscured by fuzzy swirling clouds.  Not at all uncommon for those with hcv.
Butts are overrated.

[Serenity49]

Well, I'll start with figuy, your reponse bought tears to my eyes because I believe what you said is so right on. I just want to know what's the bottom line and what we can start doing about it. I hate all this waiting and uncertanity. I'm sure you all have been through that already. The hardest thing for me to tolerate in any aspect of my life is the not understanding, not knowing. Yes, you're right, I do want to gain control. Mostly it's just I want to know. I need to start getting more sleep becasue I know that's not helping. I keep telling myself that I need to stay off the internet and stop reading and then I find myself right back at it. I did find a good site after I posted here and printed a lot of information to read through today. If I can just know, I can begin the acceptance process. It don't matter what it is, I just want to know. This is my anxiety and what makes me cry and become anxious, scared, and all the other emotions.

dperry, my primary doctor did a thyroid test and it was normal.

How did you all stand the waiting for results? I've had so many blood tests within the past two months.

[jmjm530]

It's very common that after we are diagnosed with something -- especially something as dramatic as "Hepatitis C" -- that we start attributing every ache, pain, weight-loss/weight-gain, etc, etc -- to the condition. That's not to say that Hep C couln't be causing some of it, but certainly no evidence as you've presented it.

If you want to know whether you have "severe liver disease" then you need a biopsy or Fibroscan, among other testing. And BTW being "chronic" does not mean you have "severe liver disease".

Are you seeing a liver specialist (hepatologist) or a Gastro? If you want a better evaluation as to whether you're acute versus chronic and how much liver damage you have -- I'd see a hepatologist.

Meanwhile, don't worry and try not to over speculate.

-- Jim

[charm27]

Unfortunately this is "the waiting" disease. We all must wait...labs, biopsy, PCRS, etc. It sure isnt easy. I am waiting to treat myself and after years of having this disease I am finding that for the first time Im somewhat out of control with my emotions the past few days. Anticipation is awful I know.
As Jim stated above "chronic" doesnt mean you have SEVERE liver disease.

Try to be easy on yourself.
We are our own worst enemy.

[Forseegood]

for some reason it won't let me log in to give you the addy, but go to Janis and Friends (just dunk that in a search engine along with hepatitis c) and then go to the symptoms page.

It has I think one of the best compilations of symptoms that I've ever seen anyway. Of course, with some people, they will just learn they have more symptoms then they thought, lol...anyway losing weight can be a symptom, but it can also be a big symptom of stress as well, sometimes I think it's really hard to devy out what is causing what...

on one hand it's maddening when docs, whomever, won't validate symptoms that you know you have, on the other, we can work ourselves up too, I think the answer for me has been somewhere in the middle of all that...

I don't know what it is for you, there's no way I can know, but just get checked out and go step by step...these boards are wonderful to learn from once you do know exactly what you have, and the amount of damage you have (if any, and many, many people find out they have no damage or hardly at all) but the downside is if youre in limbo right now, and you don't know exactly what's going on with you, these boards, stories, etc might have the tendency to scare the beejueesus out of ya too....

All of us on this board, have seen sooooo many people come on here, convinced they were dying of this disease with little time left, only to find out they don't even have it, or have little damage (if at all) if they do...this phenomenon has happened to too many of us...relatively speaking, very, very few people have severe disease, especially now that people are getting tested much younger, etc....

I know I'm just talking the talk, cause I did the same thing youre doing, most of us did...but try not to freak out till you have some really solid evidence of what's going on with you, with the help of some good doctors, hepatologists, etc like was said...I wish I had that time back that I was in shut down mode, only to find out I had very little liver damage...charm said it, we can be our worst enemies when it comes to disease, the hardest thing sometimes is to get out of our own way, lol....wishing you the best....

[GrandmaA]

Why not go to your primary care dr. and get a full physical check up. It is not good to panic because fear of something can become a self fulfilling prophecy. The mind is very powerful and if you feed it negative things they bomberang on you. Write down all your blessings and be grateful for them. Try to be positive. Put the problem in the Lord's hands and do your best. That is all any of us can do. The results are in HIS hands.  

[orphanedhawk]

The difficult thing for many of us, and more so for women, is hepC often doesn't show its nasty self until we are at the age where our bodies are changing anyway.
We lose our shapely bottoms sometime after the age of 40. Our energy drops, our minds become forgetful, we get hot flashes, our weight varies,our eyes weaken, etc.

Don't work yourself into a dither. Get yourself to a good heptologist and find out what your liver's condition really is. Put your active imagination to work doing something creative, like writing, drawing, dancing, or perfecting some exercise program.
Thats my advice anyway.    Good luck.

[Forseegood]

good points, what a dirty trick to have to deal with menopause and this shite at the same time..UGH! guess guy's have their own stuff too...

[orphanedhawk]

Tricky stuff, eh?
I've been thinking about you with the fires raging dwon there. Even up here, 500 miles away, I notice the change in the air. I sure feel sorry for everyone breathing that smoke.   It does make for some cool sunsets though.
      

[Forseegood]

thanks, it's much better today, but a lot of heartache for so many people and animals...(though thankfully, most had insurance and financial resources, but with this global warming, there's questions on whether people should re-build in some woodland areas, but that's a whole different discussion...there are so many woodland areas around here....

I've got air filters, AC, the whole shebang...and I'm making the kid walk the dog, she's got much younger lungs! ha ha! I know, I'm horrible...but it's really not that bad anymore and we're in for much cooler weather starting tamale, ... I hope you're well too, you're in my thoughts as well...

[Serenity49]

Thank you all for the feedback and support. I just need to be patient and wait and see. I had my yearly physical in August and that's how this was found.

Anyway, Grandma, you are so right and I need to remember that Law of Attraction.

Orphan, I had wondered about that whole connection with us menopausal women and hep c, symptoms, treatment. One day I will look and see if there has been any research on that. Whether it exaperates symptoms or impacts tx in any way.

FiGuy, butts are not overrated :-).

I'm taking a metaphorical chill pill tonight and I'm going to sleep well for a change.

[ladybug52]

Hope you had a good night's sleep...I think I told you,or maybe it was someone else, who know's, when I first was told I had hep c I lost so much weight I thought looked great at 105 lbs. (in my eyes there's no such thing as too skinny) When I found out I hadn't "spontaneously cleared" I didn't lose a pound.
14 years between the two means a lot of time moving towards menopause and slower metabolism, and less energy to panic. Wish I could have panicked off a few lbs this last time:)

Have been wondering about all of those in Ca. Couldn't remember exact locations and my geography, & ability to find my way around is very limited. I just sort of hoped it didn't affect anyone. Forsee how close are you? Is there any one in that area that's on the board? At first I thought of SFgirl, but then remembered that San Francisco is up north. Maybe if she was SDgirl I would be correct in worrying.....and with her luck a flame could have made it's way up the coast......

Hugs,
Bug

[orphanedhawk]

Hah! I think we have similar views about kids. I don't beleive in overpampering the little darlings.

When I was obsessed with Ca. native plants, I learned about the seeds that won't even germinate until they've been burnt.
Fire is a natural occurence here. It renews the soil and clears out the old dead wood. It's the people that need to learn how to live with nature. Then, maybe we won't need to fight with her.

LB: You always make me laugh! I'm 500 miles from the fires and this morning all I see outside is wet, cool, fog.

[GoofyDad]

FL: Until you have all the information for you and the doc's to make recommendations and decisions you will be peering into a dark hole with the bottom obscured by fuzzy swirling clouds.

Are you recomending a colonoscopy agaian?


but a lot of heartache for so many people and animals...(though thankfully, most had insurance and financial resources

Even the animals down there are hoity-toi. Do they hire CPA's or manage their own affairs? Amazing.

[nygirl7]

Serenity you said: that I need to stay off the internet


Well I don't agree with that - you are doing the RIGHT thing here and I hope you know it.  The more you learn about this disease, your condition, the treatments etc. the more POWER you have over it. The more EDUCATED decisions you can make (instead of the panic we all at first experience over it and that feeling of helplessness).  You ARENT helpless. Right now you are reaching out to a PHENOMENAL group of people who will do everything under the sun that they can to help you. We've ALL been exactly where you are before.

You've found people who truly UNDERSTAND what you are going through.  our loved ones, God bless them, try but...they just can't. HepC and it's treatment can REALLY be an isolating thing. First off there is such a horrid stigma attached to it that sometimes we are embarrassed (even though we shouldn't be). Then when we aren't feeling good from treatment and all we want to do is REST that we really alienate others and can easily climb right into ourselves.  But somehow when you come in here....well they won't let you!  They make you get up and go on and FIGHT for your life (and I don't mean just physical but mental too!

So many times I"ve need a good butt whooping in here to remind me why I was doing this treatment and how much I had to live for and what GREAT INCREDIBLE friends I'd made in here.

Then someday, quicker than you will believe, it will be YOUR TURN to be doing the pep talk!  You will be the "expert"! You will be helping a new person to feel at home and trying to help them learn what is going on!

It makes you feel like you have a good purpose each day and that is why some of us oldies come in here, to repay the gift we've been given!

so hang on - ask all the questions you have...chances are someone in here has been through exactly what you are and they can tell you a real life experience that a doctor well sadly won't ever understand or be able to answer.  Doctors can be good but - unless they've been in our shoes..they just never will "get it".

Good luck Serenity!
NYGirl

[nygirl7]

PS Nerves can also burn off a lot of calories on a person you know...like the others said - I would think about getting a good physical and checking my thyroid numbers and such.  Just for peace of mind!

Good luck!

[Forseegood]

Serenity: hope you're feeling better if you're here reading this...I think humor helps out an awful lot, even silliness, (I don't want to mention any names, but follow my eyes...they are going up there to the title of this post:)

[Serenity49]

FL: Until you have all the information for you and the doc's to make recommendations and decisions you will be peering into a dark hole with the bottom obscured by fuzzy swirling clouds.

Are you recomending a colonoscopy agaian?

LOL

Thanks Ladybug, I had a wonderful night's sleep - I went to bed around 11:30 and did not wake up until 8:15. That was so wonderful! I've just made up my mind that I'm not going to worry about it anymore. I have the follow up visit next Friday the 2nd and will get the latest lab results. I was overweight anyway for my height, so I've been showing off the new figure.

Forseegood, thanks so much for the janis and friends website. I did some exploring there yesterday.

NYgirl, I mean I need to stay off the internet in terms of trying to figure out what's going on with me. This has been a great site and I've found lots of other great sites and information.

[beamishboy]

i also lost weight  before trx-partially thru some guatemalan bug,but most just another  symptom of hepC-maybe my viral load?.and it wasn't muscle loss....go buy some smashing new clothes girl and GOODLUCK