Medical Forum / Diseases and Disorders / Hepatitis / May 2004
Diagnosed. What now?
|
|
Thread rating:  |
Matt - 18 May 2004 13:28 GMT Greetings,
I was diagnosed last night with hep-C. The details were sketchy due to just getting over a colonoscopy. My wife took most of the details over the phone.
I'm a 45 year old male.
What can I expect now? What's in store for me as far as tests and treatment?
Will my quality of life change?
Any info from will be greatly appreciated.
Thanks,
-Matt
elmoemerson@webtv.net - 18 May 2004 15:53 GMT Hey Matt!! Sorry to hear you were diagnosed with hepc. It's not the end of the world. The next thing you can expect is a referral to a gastroenterologist for further assessment of your condition. He'll run a battery of blood tests on you, will check your viral load and hcv genotype. More than likely, he'll want to do an ultrasound and biopsy of your liver. If you think it's possible you've had it for awhile, a biopsy is important to determine whether or not there is damage. The course of treatment (tx), if you should elect tx, will depend on the results of your biopsy and your genotype, among other things. Quality of life? How is your quality of life right now? Are you fatigued, depressed, angry, arthritic or show any other vague symptoms which you can't attribute to anything else? I wrestled with this disease for 4 years almost to the day after being diagnosed and seem to have beaten it. I feel better than I have in years and am still recovering from the last go at the dragon (virus). They tell me my liver is healing as long as I don't abuse it and that inside of 5 years, it'll be in pretty good shape again. One thing I can tell you....If you don't do the tx, you dont stand a ghost chance in hell of beating it. Let your doc advise you on whether you are a candidate for it or not and make your own decisions. Stick around, there are plenty of us here who have gotten the same bad news as you to swap stories and concerns with.
Elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
Matt - 20 May 2004 16:21 GMT Thanks for the words of encouragement. I really need it now more than ever.
I talked to my doctor and he ordered another blood test. Just to be sure. But I'm 100% sure I have it. I've been doing a lot of brooding and getting angry. I need to stop this so I don't cause any more damage to myself.
I have an appointment on June 7th to see a nurse and discuss/learn about hepc. I'm going to demand a biopsy to see where I'm at.
I was diagnosed with Prostatitis, and maybe Inflamatory Bowel Desease, just this past week. Good grief. Sometimes I feel like I'm at the end of my rope.
I've lost a lot of weight. 20lbs within the lost month or so. Could this be a symptom of hepc?
But then again I had some major bowel changes, and spent a few weeks eating rice and apple sauce. Lost my job of ten years, found a new one in a couple weeks, and I'm trying very hard to make an impression. Stress city for sure.
I'm just very lucky that I have a very loving and understanding wife. Without her I'd be a basket case. Well... a worse basket case. :)
It's difficult to keep my mind on my work. Did you guys have this difficulty also? What did you do to try and stay concentrated? Any help would be great.
Thanks for letting me rant.
-Matt
Alias - 20 May 2004 16:30 GMT > Thanks for the words of encouragement. I really need it now more than > ever. [quoted text clipped - 29 lines] > > -Matt Most people who have Hep C will die of something else. If you're not a genotype 1, your chances of treatment getting rid of the virus is very good.
If you drink alcohol you should stop now. That means zero alcohol.
Alias
Russ - 20 May 2004 19:02 GMT Just rant away, were here to listen. I was having increasing problems with fatigue and persistent but slight nausea before I started treatment.
It is a heavy load to find out one has a "disease", especially a virus. I called it the "heeby jeeby" factor. That feeling when you wake up in the morning, feeling "dirty" and "contaminated".
My solution was to tell everyone and quit making it a secret. I haven't had any negative responses in doing so.
Good luck and let us know how the blood test goes.
 Signature Russ Remove "NOSPAM" for replies.
> Thanks for the words of encouragement. I really need it now more than > ever. [quoted text clipped - 29 lines] > > -Matt elmoemerson@webtv.net - 21 May 2004 04:25 GMT There won't be a day go by from here on til you get rid of the virus that you won't think about it. Acceptance, knowledge and action will help keep you focused. At least til you begin treatment. LOL. Elmo //////// Thanks for the words of encouragement. I really need it now more than ever. I talked to my doctor and he ordered another blood test. Just to be sure. But I'm 100% sure I have it. I've been doing a lot of brooding and getting angry. I need to stop this so I don't cause any more damage to myself. I have an appointment on June 7th to see a nurse and discuss/learn about hepc. I'm going to demand a biopsy to see where I'm at. I was diagnosed with Prostatitis, and maybe Inflamatory Bowel Desease, just this past week. Good grief. Sometimes I feel like I'm at the end of my rope. I've lost a lot of weight. 20lbs within the lost month or so. Could this be a symptom of hepc? But then again I had some major bowel changes, and spent a few weeks eating rice and apple sauce. Lost my job of ten years, found a new one in a couple weeks, and I'm trying very hard to make an impression. Stress city for sure. I'm just very lucky that I have a very loving and understanding wife. Without her I'd be a basket case. Well... a worse basket case. :) It's difficult to keep my mind on my work. Did you guys have this difficulty also? What did you do to try and stay concentrated? Any help would be great. Thanks for letting me rant. -Matt
http://community.webtv.net/elmoemerson/DocElmosHepFile
Susie Quill - 24 May 2004 09:33 GMT > Thanks for the words of encouragement. I really need it now more than > ever. [quoted text clipped - 29 lines] > > -Matt Matt, Well, HCV never made me lose weight. Your weight loss probably came from the bowel problems and eating rice and applesauce for a month. If you weren't eating any protein, you probably lost a lot of muscle....which isn't a good thing for anyone. Bowel problems can very well be a side effect of HCV though. Get rid of the virus and some of those symptoms may go away.
There has been some positive things in my life because of the HCV. I'm more knowledgeable about some things because of all the research that I have done on it.. That has helped me in my field actually, and made me more open to some things I was very closed minded about before, i.e. herbs, supplements. I do the research now before passing judgment.
There are negative things as well, of course. I don't think a day has gone by since the dx. that I haven't thought about it. You just have to focus on what you can do. Mourning is part of the process though. Mourning the idea of who we believed we were physically, and how we felt our lives would turn out when it seems to be going in a completely different direction. It is a terrible psychological loss.
You will get a handle on it and deal with it. It took me a while though to figure out that obsessing over it and reading hundreds of articles about it wasn't getting me very far, except that I became sick of the subject finally and stopped obsessing. Starting treatment has given me a feeling of taking back some control over my life. This is the place to rant.....cause everyone here has been their.
SusieQ
Matt - 24 May 2004 16:43 GMT Hi Susie,
Thanks for the post. And the words of wisdom. I can see that you've experienced quite a bit.
The feeling of powerlessness is overwhelming. The feeling of not knowing the full condition is worse. I'm a worry-wart by nature and I'm sure that I'm dying of cirrhosis and my liver is on it's last lap. I obsess every day. I get depressed and scared. I begin to feel hopeless. Every ache and pain is now enhanced and cause for worry. I fear to eat, fear not to eat. I feel lost, alone, overwhelmed, terrified, depressed, anxious, and sad.
I need to know what my condition is. But I have to wait. And wait. And wait. Each day is grueling. I live in constant fear.
But on the bright side I've stopped losing weight. My wife and dogs still love me. My cats are pretty much indifferent about the whole situation. I laughed my a.s off while watching Shrek2 yesterday. And I slept like a log last night.
But!
I also surf the web and read hundreds of articles on Hep. Thus begins the crippling cycle again.
I agree. The psychological impact is devastating.
I fear the worst, and hope for the best.
What was the treatment like for you? How long since the treatment? And how is your quality of life now? (If that's not too bold to ask)
Thanks again,
-Matt
> Matt, > Well, HCV never made me lose weight. Your weight loss probably came from [quoted text clipped - 28 lines] > http://www.newsfeeds.com - The #1 Newsgroup Service in the World! > -----== Over 100,000 Newsgroups - 19 Different Servers! =----- Alias - 24 May 2004 16:48 GMT While you're waiting, get some Milk Thistle and start taking it everyday.
Alias
> Hi Susie, > [quoted text clipped - 65 lines] > > http://www.newsfeeds.com - The #1 Newsgroup Service in the World! > > -----== Over 100,000 Newsgroups - 19 Different Servers! =----- Susie Quill - 25 May 2004 10:50 GMT > Hi Susie, > [quoted text clipped - 32 lines] > > -Matt I've only been on treatment for 8 weeks. I developed a condition called fibromyalgia which is a sleep and pain disorder. My last doc. finally agreed that it was probably triggered by the HCV. My viral load is considered low, 126,000 or so, progress of disease slow, grade 2, stage 1, liver enzymes generally normal. Because of the loss of quality of life due to the fibromyalgia, I finally didn't feel I had any choice and just couldn't wait for anything better to come out. This is the best time for me to do this because I have some sick leave and insurance.
I just got home tonight from going to see Shrek 2 after work. Laughter is healing I think. It was good, wasn't it... Middle of the week is sometimes a good time for me to get to a movie,. so I take advantage of it when I feel a little better. . Treatment on Friday makes me pretty sick thru monday's and I'm taking sick leave most every Monday. Some people are able to work regularly without a problem. Others quit work during treatment to help them get thru it. I have type 2b, so only have to go 24 weeks total, but having some problems with WBC (white blood cells) and RBC's (red) being too low at times and since I don't have a hepatotogist, I have an overly cautious internal med docs. and feel like I'm fighting to keep them from taking the med from me due to side effects.
However, I'm going to get thru this somehow and feel very positive about the final outcome.....in the long run. At least I feel like I'm doing something to take control of my life back.
Wish I could sleep like a log though like you said you did last night. One of the main reasons I'm doing this is to get my ability to get a good nights sleep back. Would be wonderful.
Once you find out exactly what your status is with a biopsy, you will have the information you need to make some decisions. The not knowing what the situation is for sure is the worst feeling because a persons imagination can go wild with every little ache and pain. You have a good support system though, and that can help so much. You also have this list.
Worry is like a rocking horse, it will keep you busy, but won't take you anywhere. Try not to obsess and worry so much. . I know, that was really easy to say, and it is a lot harder to do.
SusieQ
> > Matt, > > Well, HCV never made me lose weight. Your weight loss probably came from [quoted text clipped - 28 lines] > > http://www.newsfeeds.com - The #1 Newsgroup Service in the World! > > -----== Over 100,000 Newsgroups - 19 Different Servers! =----- Don - 27 May 2004 20:59 GMT >The feeling of powerlessness is overwhelming. The feeling of not >knowing the full condition is worse. I'm a worry-wart by nature and [quoted text clipped - 3 lines] >fear to eat, fear not to eat. I feel lost, alone, overwhelmed, >terrified, depressed, anxious, and sad. Matt, welcome to the HCV club. Don't over react to your diagnosis. Only about 20% of people with HCV progress to cirrhosis. And even that doesn't mean your life is over. I'm 46 and recently was diagnosed with HCV myself. I panicked also and assumed the worst but I got over it. Worrying is detrimental. Take action. Find out your genotype and get your ultrasound and biopsy scheduled. Chances are your liver's not in too bad of shape and though it can be tough, this disease CAN be defeated. Even the nasty genotype 1 can be taken down. When I was diagnosed I was prepared for the 48 weeks to beat genotype 1 but was very pleasantly surprised to find out that I had genotype 2 (24 weeks treatment and 80% cure rate). Either way you play the cards you were dealt. You are not powerless in this struggle. I'm not. I'm gonna kick some HCV a.s. I'll start treatment in June. Good luck.
Matt - 28 May 2004 21:51 GMT Hi Don,
Thanks for the encouragement. I just hope that I fair as well as you. I suspect I have the type 1, but won't know for sure. My first appointment is June 7th. Then I suspect that will be when I get all my tests scheduled. If I do get the oppurtunity to get treatment mine would most likely start in July.
I wish us both luck. Perhaps we can keep in touch and swap hep stories? Do you play computer games? I know of a Play By Mail war game that can be kind of fun.
Anyway, thanks for the words all the same.
-Matt
> >The feeling of powerlessness is overwhelming. The feeling of not > >knowing the full condition is worse. I'm a worry-wart by nature and [quoted text clipped - 18 lines] > I'm gonna kick some HCV a.s. I'll start treatment in June. Good > luck. Russ - 28 May 2004 22:29 GMT Let us know how the test's go Matt, good luck...
 Signature Russ Remove "NOSPAM" for replies.
> Hi Don, > [quoted text clipped - 34 lines] > > I'm gonna kick some HCV a.s. I'll start treatment in June. Good > > luck. Paul - 18 May 2004 16:02 GMT On 18 May 2004 05:28:34 -0700, matthew@puckertoe.com (Matt), in message ID <6e101bc9.0405180428.541086ee@posting.google.com>, in the newsgroup alt.support.hepatitis-c wrote:
>Greetings, > [quoted text clipped - 14 lines] > >-Matt If you haven't already done so, get your doctor to refer you to a liver specialist. The specialist (or maybe your own doctor will do this) should have blood tests taken to see how well (or otherwise) your liver is functioning and to establish which genotype (strain) of hep-c you have. There should also be a biopsy done to see how much (if any) liver damage you have sustained. Depending on the result of the biopsy, you will either be offered interferon/ribavirin treatment (often horrible side effects) or advised to wait for an easier treatment to come along in a few years. Hep-c usually progresses very slowly so the waiting option is viable for some people - especially if their liver is still in good condition. The side effects of interferon/ribavirin can be nasty and some people have to be taken off the treatment. The vast majority complete the treatment but side effects cannot be predicted as it's different for everyone. I am on week 10 of this treatment and, so far, it is tolerable though sometimes unpleasant. The biggest issues for me are low energy levels, persistently dry mouth, and some pretty awful mood swings. There is a lot more to making your decision than what I've said. Everybody's life circumstances are different. I found it a good idea to tidy up a few things in my life before starting as I didn't want to leave myself with anything complex to deal with. LOL. Then, in a few days, on treatment, I walked out of a job, got dumped by my girlfriend, and my old van fell to bits and I had to get another :-) . Funny thing is, it was easier to cope with on treatment because I had a bigger fish to fry (getting well). Well, that's life. I wish you well. Please keep posting, won't you? And remember that the only daft question is the one that you DON'T ask.
 Signature Paul
Use the reply by email facility in your newsreader to send email
|
|
|