Something to share with other's in the group that go through the same thing, may have the same problem but don't know, or even to educate other's here learning about our disease.

I wouldn't call them symptoms since we have been diagnosed but what do you deal with on a daily basis.

even though i'm off my meds i still am fatigued, depressed, appetite loss at times. the whole thing really except i'm missing the weekly needle and daily pills. besides the other medical problems that came out of this disease, i basically feel the same way with a 0 viral load. it has changed my whole life and what aggravates me is that i have no idea where i got it from. it never really goes away but something we have to learn to cope with no matter what. i'm just thankful to be alive to Man upstairs. kimi

Well, on a daily basis I feel pretty tired most of the time. Not too nauseous but sometimes I eat and it just doesn't stay in there.  I can pretty much tell you exactly where my liver is as it hurts almost constantly.  Altho i've been taking Liv.25 and Maximum Milk Thistle along with grapefruit juice and the pain isn't as bad as it was.  After the liver biopsy it really got mad and acted up.  I don't know if these supplements are helping or if this is just a temp thing.  I go in day after tomorrow for an endoscope on my esophagus to see if i have esphogeal varices.  Don't ask me what tortures they have in store for me if they find i have them.  I have heard meds but also heard shunt surgery. O JOY.  Most of the time I just barely make it thru the day.  Frequently going to bed at 7:3- to 8:00 and if i don't do that I regret it the next day.  Thankfully I push pencils in a doctors office and we have bunks where I can sleep during lunch.  Most of the time I go to work and then home. My home is nowhere near as clean as it once was, distressing but you just do what you can.  Pray for me on Friday guyz, I could use all the good thoughts and prayers I can get.  Kinda scared to say the least.  I think that's the main thing actually, since HCV is kinda like a freight train that jumped the tracks and you just aren't sure where it is going, how fast it's going to take you there and how rocky the road will be.  Maybe the train will stop by itself and maybe it will go over a cliff.  I'm scared.

3/22/2008 is my 3 year liver transplant anniversary. I still get the body aches from head to toe, the fatigue and still get some liver pain. After you have had hep-c so long and also being post trans. you don't know if its the meds or the hep-c causing the problems. Hep-c is forever and post trans. it works on the liver faster than the 1st time around. My GI called yesterday and told me that they want me to see the heart transplant DR because my heart is enlarged on 1 side now. It is probably because of the hepato-pulmonary problems I had pre trans. The only reason he wants me to see the heart trans people is because of the immunosupressants, transplant Drs know more about side effects of them. That way they wont confuse side effects with true symptoms. I thought after being tranplanted that things would be back to being like they were years ago but it doesn't work that way. I really should not complain, I'd rather deal with the symptoms than the alternative. A very good friend of mine just died sunday from liver failure. He was hep-c positive but he woundn't stop drinking so it was just a matter of time. Now he leaves his 84 y/o mother alone with no support. He was only 57. This disease has taken 2 of my old friends already. World wide it must be thousands and thousands taken by hep-c. I just pray that a cure is found soon and no one else will have to suffer the way so many of us have

Thak you all for sharing this is what we need to do is be there for one another.

I know my spleen acts up alot. It's swelled but mos times worse than others.

I agree with all of you I am tired too and when I worked I found myself sleeping on my breaks and lunches.

It's a shame that Hepatitis C doesn't get more noticed since it is causing more deaths and attacking more people than AIDS.

But who am I but another victum.

Remember May 19th is World Hepatitis Day!

My event is May 17th sostay tuned for more.

Love you all very much my friends. I'm tired and it's time to get to bed.

Laurie

Well, I got my esophageal endoscopy the other day and the esophageal varices that they were looking for from hypertension from the cirrhosis is not there!!! I told the doc I have really bad gastric reflux and that since he was fishing around down there see if there were any ulcers etc. Come to find out the reason I have reflux is I have a hiatal hernia...who knew. Take the meds every day now and that at least feels better. I have been taking the Maximum Milk Thistle and Liv.25 lately and I do notice that the pain in the liver area is much reduced and some days not at all. Not sure if that is due to the supplements or not but I'll take it!!

Well, congrats for that Morgan! I'm glad they didn't find any varices, big relief! I have acid reflux disease too, no hernia that I know of though. Living without my appendix & gall bladder probably contributes to it though, along with the Hep C & on/off again ulcers. I've been on stomach meds since '89 for that problem. For whatever reason, I'm glad your liver is not bothering you as much. Every little bit helps, eh?! Sorry to hear about your heart, Anon. This dang buggered disease. It's almost like damned if you do, damned if you don't for some of us it seems. I've had at 2 very close friends die from Hep. My Dad also died from liver failure 2 yrs ago. None of them drank though. I've heard so many doctors, etc. say how wonderful it is after you have a transplant & how great it all is. After allot of consideration, research & hearing from people who have actually had one, I think it's not all that it's cracked up to be. Like you say, the alternative is much worse, but how many people are going without transplants because they can't afford the surgery in the first place.. or can't afford the costs of the meds afterwards? Or the complications. I don't want to sound like a wet blanket or negative, but is it really worth it to just keep fighting the same fight over & over again when the outcome is going to be the same in the end anyways? My daily symptoms are the fatigue, spleen & liver pain, muscle cramps, nausea, cold to the bone, & the wonderful brain function loss. I can't spell anymore, remember common names for everyday implements/tools, etc. & I don't even try to remember a list for the store anymore or the story that someone told me the week before. I also have hair loss, fluid retention & dry skin to the point that it cracks open in the crevices of my legs & hands if I don't at least try to keep it a little bit hydrated everyday. I haven't been to my gastro doctor in 2 yrs now & I know I'm not doing myself any favors, but what are they going to do for me that I don't already do for myself now? Other then to tell me how much worse off I am then I was before, which I already know. Put me on more medications.. which I can't remember to always take the ones that I have now as it is. Run me through more tests, which is going to cost us more money that we already don't have. I know I'm whining, but why the hell not. Everyone wants to pat me on the back & say it will all be okay, when I know it won't be. Or tell me how brave & heroic I am for keeping a good face forward...uhh, and my alternative is? All I want to do now is just live the life that I have left with as much dignity as I can without people giving me empty platitudes or insisting that I go through all of these many doctor appts. when it won't affect the outcome anyway. I hate that the phamaceutical companies & big corporations are making money off of us that are so ill that we don't have any means or way to fight back. That the medical society & the population as a whole still stigamatize those of us that have this disease as some kind of untouchables or unworthy of proper backing for finding a decent cure or vaccine so that others won't get this in the future. It's deplorable that not every single person in the United States, UK & other countries do not know everything about this disease, like they know about AIDS/HIV, in this day & age & with it's epidemic proportions out there. So yeah, I'm angry. So yeah, I'll keep fighting. Because now I'm dealing with another epidemic, MRSA on top of the Hep C. And once again, the docs & governemnts are saying it's not all that big of a deal. And I'm having to listen to their b.s. rhetoric all over again with a new disease. So for each of us that is fighting this battle, I say more power to you & God bless & give you strength to carry on each & every day. I love all of you. Keep up your hope & keep up the good fight.. but never let anyone tell you that everything is just "hunky-dory". We know better. **HUGS** Josi

Glad to hear the neg. report for esoph. varices! My ex is HCV+ but he also has had a hiatal hernia & GERD for a LONG time! He didn't always have problems with it but it reoccured over the past yr. The MD discovered he has "Barrett's Esophagus". Instead of your esophagus being pink in color, it is more "salmon" and the cells are arranged differently. It is caused by prolonged exposure to stomach acid. In his case his cells are pre-cancerous but only Stage 2 out of 5(being the worst...adenocarcinoma, with a 10% survival rate). He also has something wrong with his parotid or salivary glands in which they produce PINTS of saliva a DAY! He has to constantly spit out tons of it BUT somehow it gets into his head sinuses and now it interferes with his hearing, seeing and somehow his short term memory is affected. Also, (this is ALL in the same yr. and he is ONLY 40 yrs.old) he was diagnosed with 3 herniated discs and TMJ, which stands for “temporomandibular joint,” or jaw joint. These are the small joints in front of each ear that attach the lower jaw to the skull, and happen to be the most complex joints in the entire body. The area of the face where the TMJ is located is an intricate network of bones, including the teeth, muscles, and nerves. Because of this, TMJ (dysfunction) conditions affect many areas of the body, from the top of the head in migraine-like headaches to numbness or tingling in the arms and pain in the neck or shoulders. He is given a load of narcotics for pain but nothing seems to work. They are considering injecting Botox into the nerves. I'm permanently disabled from a near fatl car accident in Dec.'97. I go to a Pain Clinic for non-union fracture of my (L) humerus and the screws that fell out of the rod, are now resting on & off a major lower arm nerve. If I move a certain way, it's the same pain as a dentist drilling through your tooth into a nerve WITHOUT novocaine! Problem is, I can't say STOP! I also have a rod in my (L) femur, a shattered lower (R) tibia that made my foot turn inward, so I use a cane, if it entails a long walk. Yeah, I'm HCV+ too and have no clue as to genotype or viral load. I had my liver enzymes taken once, back in 1998 I think. I do NOT go to MD's for ANYTHING, if I can help it! I have no ascites, spider veins, enlarged liver or pain. I have a normal amt. of energy,sleep well and appetite is OK. As many people here already know, I am a major proponent of alternative medicine and totally against Interferon/Ribavirin and the like... I have been taking loads of liver restorative/detoxyifying herbs and vitamins for a LONG time and take many other things to complement those items and make everything "kick in". It works...what can I say? By the way, Morgan, besides the Milk Thistle, is the other item you take Liv. 52? and NOT 25?

Jolynn I know what you mean about people telling you all the time that you will be fine. Hell if I'm so fine why am I stage 4 when I went through 48 weeks of interferon/ribavirin and was stage 3? I work for doctors (oral surgeons) who are the worst offenders of telling me how fine I will be. I think people can't face that we are not fine and they are scared for us as we represent what they could be. People don't like to face illness and death it is inconvenient and makes them very uncomfortable. I'm beginning to become more comfortable with the idea. I'm only 53 now and the woman in my family normally live to 90's. A long time to go. I know about the memory loss--words that I know are just not there and couple that with menopause (yes!! I always wanted to be old!!!) and it's a wonder I can finish a sentence. We laugh at work I get to blame it on one or the other depending on the day. Karen, I know all about TMJ from working for the oral surgeons and also from 3 surgeries. I have a hunk of silicon in my L TMJ that finally laid down inflammation tissue from so many years of inflammation that it solved the problem on its own. Stress of course is the absolute worse thing for TMJ. If your ex feels himself getting stressed one trick is to put your tongue on that wrinkly area right behind your teeth at the beginning of your hard palate and to push cuz it's very difficult to clench your jaw when your tongue is in this position. Meditation is a great help along with simple yoga to realign an out of alignment body. He's probably already done all this but thought I would put it out there anyway. It is Liv52 that I take. What other herbs etc do you take that seem to help you. I have been nervous about herbs cuz there are so many people who talk a good story but don't know what they are talking about. Be interested in finding out what you can advise on this. Well guyz I gotta run dinner is ready!!! Have a good night and God Bless. I wish I could give all of us a gift of even a half hour of feeling wonderful again, if I could I would.

Thanks for the reply Morgan. I was really bouncing off the wall that day that I posted. Most times I'm pretty accepting of where I am with all of this & what the outcome is going to be. But every once & awhile.. well.. you know. They just keep adding more things on top of the Hep C that is wrong with me & at times it just gets to the point of "geez..how much more am I suppose to be able to handle!" But by the next day, or even later that day I'm usually back to status quo. The MRSA I've been fighting for about 2 yrs now. I caught it from the hospital ICU unit when I was helping take care of my Mother & nursing my Dad at home.. who also had MRSA & cirrhosis. I've had multiple abcesses that needed to be opened up surgically, drained & packed. These aren't small boil types, these have been as big or abit bigger than the palm of a hand size. 2 of them have been on my face & to the point where I couldn't talk or eat. Finally, with the last one.. after multiple times of asking my doctors to PLEASE put me on IV antibiotics, which they refused to do.. saying that everyone has staph infections, I went to our regional University Hospital ER. They instantly put me on IV antibiotics & I spent the next 3 months, each day making trips into Seattle to have them redress & repack the wound, that they opened up on the side of my face/neck & go through IV therapy to get it all under control. Since that time I haven't had any major infection. That was one of the reasons for my outbursts. I knew that I needed the IV medication & had asked for it repeatedly, and the doctors up here in my town refused to even contemplate it. I guess because, 1. I'm a woman. 2. I'm not a doctor. 3. I violated the code that says that since I'm a patient, I must always take my doctors word as the best advice. The best thing is that I finally took my rear into the hospital where it was addressed correctly. But my point is, why should we have to be so insistent? It's not like I didn't have the insurance or the money to cover the medications. I think the 2 doctors that I had either didn't know enough about it, or didn't care enough about me. Both instances are bad. Because I firmly believe that if your doctor doesn't know enough about a condition of yours that he should either refer you to someone who does, or educate himself so he can provide you with the best treatment possible. I wish all of us had one day at least to be "normal & feel well" again too. Wouldn't that be grand!! Both Karen & you & Laurie are all taking supplements & herbs, which I know can help. I wish I could too. When I tried them they made me very ill, so I'm not able to go that route unfortunately. Wish I could. Well, guess I'll quit rambling on now. Here's to some days with less pain for all of us. I give each & everyone of you my hugs & thanks for being here to listen. Love u all, Josi ps- My Mom had a stroke & she can't remember words either. We laugh when we have a conversation together too.. sounds like a couple of loonies talking together!! hehe Drives my brother crazy!