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Avatar universal

Just dx

Hi, i am new newbie at this.  Well about me, 53yrs young, 5-6', 130lbs.  Quit drinking 12-24-10, started with serious itching.  Went to the doctors 2-22-11, and followed with a specialis and was told I have cirros of the liver stg 3/4 with hep c.  Biop coming in 2 weeks.  Doctor wants to wait for pegasis to be approved, the I can start treatment.  Married for 28 yrs to a very supportive wife,  she is scared and I have not shown her I too am very scared-need to be strong for her.  As I read these forums, the side effects are nothing to smile about.  I am very active or was, big time napper now, fatigue, go figure. This forum is my way to say to somebody that I am scared, but strong for wife and family.  I was wondering if I did nothing what would the the outcome be.  Thanks-
18 Responses
Avatar universal
Sorry to hear of your diagnosis.  I don't have the necessary experience to comment but others will chime in.  Welcome to the group and hang in there.  It's okay to be scared but it will all be okay.
1491755 tn?1333201362
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Newly%20Diagnosed_10.pdf

When I was diagnosed I had many questions here is one PDF that was helpful
Avatar universal
Steve....to be honest, if you did nothing, good chance you'd be heading for a liver transplant, and if you let it go too much further, your risk for liver cancer increases.  Beyond that, your life expectancy shortens considerably.

Try not to be scared of treatment.  Really.  Lots of us went through it and while the side effects can be anything from mild to debilitating, you can get through it.  On top of that, treatment often reverses some of the liver damage.  I would try to relax and learn what you can about treatment - other folks here with damage same as you have done treatment and been successful and are doing well.  

There is lots of support and shared experience here.  The more you know and learn, the better it will be for you.  Welcome you to the forum.

Trish
1477908 tn?1349567710
Not sure where they got the stage 3/4 results without a biopsy, but certain blood tests can point to cirrhosis - platelets, albumin, bilirubin, INR, creatinine - just to name a few. If your bilirubin is elevated, it could be a cause of your itching. The upcoming biopsy (bx) will give you and your Dr. a clearer picture of liver damage.

Pegasys has already been approved and in use, so perhaps you mean Teleprevir or Boceprevir - new meds due on the market in the next few months? And yes, a good idea to wait for them since they are so close. The odds will be more in your favor, espcially with the cirrhosis dx.

Good job on kicking the booze. I'm sure your Dr. has given you the speech about the danger of alcohol and HCV, especially with cirrhosis. Each drink at this point effectively pounds another nail in the coffin. So none, nada, zip......

Another thing you have going for you is your relationship with your wife and her support. I was newly single when I went through tx, but even with other family and friends for support, I often held them at arm's length in trying to stay strong. The only piece of advice I can give there is to let people in as much as you can. Sometimes being strong can be interpreted by others in our life as being pushed away, so tread carefully there.

BTW, there are several other members here that are in - or have been in your shoes (myself included) so you are not alone.......Pam
446474 tn?1446347682
Welcome!

What is the itching like?
Do you have any other symptoms of liver disease?
Fluid buildup in feet, ankles or legs?
Bloated abdomen?

Wait for your latest biopsy results to come back. (BTW stage ¾, stage 3 of 4 indicates fibrosis NOT cirrhosis). Then you can decided when and if you need to treat now.

As was mentioned above, your doctor is probably talking about the new anti-viral medications that will be available later this year. These meds will give you the best chance of ridding yourself of hepatitis c for good.
Since you haven’t treated before you should ask your doctor to have an IL28B test performed. The results of the test will let you know what your odds of treating successfully are.

You are scared as we all were because this is new to you. As you educate yourself you will see that this disease and its treatment is "doable". This is nothing that you can’t handle. Most people in this community have done treatment so you can get a lot of feedback and tips along the way. We are all in this together. So welcome!

If it should turn out that you are stage 3 or 4 (cirrhosis) you should want to treat ASAP. If your liver disease progresses to decompensated cirrhosis (the most advanced stage 4 cirrhosis, when the liver can no longer perform all of its functions) most doctors will not treat you with hepatitis c at that point. When the liver becomes decompensated your only option will be a liver transplant. Liver transplantation is a life changing experience. Hepatitis treatment can’t be compared to liver failure and liver transplantation. So don’t miss this opportunity to treat while you still are able to do so.

Remember alcohol is toxic to your liver and will increase the degree of disease and its symptoms. Also stay away from NSAIDs (nonsteroidal anti-inflammatory drugs)
such as Ibuprofin, aspirin, naproxen sodium, meloxicam. They can damage your liver also.

Cheers!
Hectorsf
Avatar universal
Hi- ok, sorry above comment good info, but sorry, the word, "doable", *****.
Look Man, am proud of you for seeking treatment and advice. I was so scared, I cried at the Doc's office.
The treatment is not easy- not even, "do-able", somedays. I have no idea what the heck that means! It really upsets me. Your whole life will b stolen from you, to phrase it so easy is almost like someone has not been there. Like alot of these Dr's have no clue. Only ones who experience are the ones who relate. Everyone is different. Mayb same symptoms, but differnt degrees of. I joined this for support, do-able is not a word, I wud ever reccommend. I've been on tx, for 4months. I've wasted everyday of that, laying around with no energy. You probably won't barf much, but may feel queasy, and docs give nausea pills. I wud have people make you food, as I live alone and some days can't slough to the,k kitchen. Food does help with your strenght. I thought I wud b hanging over the porcelain steering wheel all the time,,but never! We aren't getting as much interferon as full speed cancer peeps. You have to find out what the symptoms are and what works for you. Some things don't work. My first month, only sx were that I was weak and pale, no biggee, 2nd month kicked in.  Your family and friends may bcome distant cuz you are gonna b grumpy and may seem bi-polar.Lol. I usually get tears when some of them ask how I'm feeling. It's like they really care. You will lose your identity for awhile and barely exist- if this is considered "do-able," then I'd like to know how. Geez.    
Avatar universal
"The treatment is not easy- not even, "do-able", somedays. I have no idea what the heck that means! It really upsets me. Your whole life will b stolen from you, to phrase it so easy is almost like someone has not been there."

Well, I was there for 72 weeks, as Bill, on very high doses of ribavirin. I'm a self employed general contractor, one who wears the tools and uses the shovel--I worked through treatment. That isn't to say I didn't have to slow my pace down some, readjust my schedule at times. But, you do what you have to do, and it is what it is. Worrying is wasted time, time that could be spent educating yourself on the disease and it's cure.
  Being a bit scared is to be expected, a human response to the unknown. My suggestion is to read all you can (and not necessarily here), write your questions down in order to discuss them with your doctor. Take what you do read here, of others experience with a large grain of salt! Each person is different and treatment effects each person differently as well. If you were an emotional sap to begin with, treatment will certainly heighten those traits. If you go in with the attitude that again,it is what is, you can't change the past, so you just have to do what is required and get on with your life you'll be the better for it in the long-haul. There are some very knowledgeable people here and there are also those that are not, shouldn't take you to long to figure out who's who.
So, sit down with your wife, work together on educating yourselves and hit it head on. Best of luck, Pro
(it is doable!(vbg))
1477908 tn?1349567710
Just for the record, Hector has more experience in these matters than you know!

To throw out phrases like, " Your whole life will b stolen from you..." and "I've been on tx, for 4months. I've wasted everyday of that," are irresponsible IMHO. If you're at 4 months or more, you've most likely reached UND to continue. Can you explain to me how continuing tx with an UND under your belt is wasting your life? Do you have any idea how many people would love to be in your shoes?

No one has ever said tx is a walk in the park - and it does vary from person to person as far as sides go - but for the majority (agreed, not all) tx is "doable" - possible, capable of being done. And for those of us with advanced liver disease, each iota of possibility gives us a glimmer of hope.

Pam
Avatar universal


  Not much to add to the above other than to say congrats on the stopping drinking...,stick with that, as it is like adding fuel to the fire with liver disease. Good luck with the biopsy, and treatment for many  ,although sometimes not easy ,it is much better than  the alternative,which is doing nothing and possibly ending up with greater damage to your liver.

To Curehepc:    Some certainly struggle with treatment more than others but most get through it just fine. Personally I  was lucky and had very few ,if no side effects,however for those beating this thing down it is a pretty fair trade off....

WILL
Avatar universal
Great advice from Proactive and others.

I have to say not everybody likes that "doable" word...it's caused a bit of ruckus before. :) It does mean different things to different people so it's all context.  :)  

Your life will certainly be altered on treatment, that's almost a given.  Some people have very little impact but on the whole there is a management that's required as you go through treatment - fatigue is a common side effect to deal with and you learn strategies to maximize your energy stores so that you have it for the most important things - resting evenings and on weekends so you have enough during the week...and recognizing that your social life may take a hit for awhile.  You'll pick and choose what's important to your quality of life to keep going and what you will decide to or need to opt out of for awhile.  For someone to go into it expecting that everything will stay the same would be setting themselves up for things to be so much harder and is a completely unrealistic approach.  Better to hope for the best and prepare for the worst and things land somewhere between those two.  

Attitude is a big deal.  If you determine you're going to ride it out and take each day as it comes, it goes so much better.  I certainly didn't have my life stolen from me although it was definitely altered and there were different things to deal with along the way. I worked through treatment doing a job that was highly analytical, took an evening course to continue the studies I was in the middle of - it wasn't lightweight and it forced me to get out of the house.  I lived alone and I managed pretty much all my needs with other people in my life giving me mainly social outlets that were appropriate so I didn't become too isolated.  You'll find ways to get by.  If you focus more on what you CAN do than on what you CAN'T do...it goes so much better.  You learn ways of conserving energy so that you CAN do what's most important.

This is a great place to come for support as you'll be amongst other people who will understand what you're going through...and where you can say "I'm scared" and we'll say " been there...it gets better"  :)  

Good luck, Steve.

Trish
206807 tn?1331936184
Curehepc is going through a rough time with the sx. She has earned the right to rant and vent if she so chooses. A lot of us have been there, remember? As many of you know, the word “Doable” is also one of my Pet Peeves.

Steve- you have received some good feedback. Don’t be surprised if your Biopsy tells an entirely different story, keep us posted. There are no promises as far as the side effects go. You’re not going to know until you jump in. Hopefully you will be one of the fortunate ones. Welcome to the forum. We will be here for you rather it be support, information, or just need to vent. R Glass
Avatar universal
''One man's trash is another man's treasure'' just as one man or woman perceives the treatment experience as life stolen or not doable yet another with relatively the same experience finds it quite manageable.  It's depends on the person.  
206807 tn?1331936184
"It's depends on the person.” Your wrong.

The person has no control over how tx effects them. It’s not a mind over matter issue. Over the years I have seen many people that their Drs. Have stopped tx do to the sx or had to stop it themselves. This wasn’t because of the person; it was because of how the person’s body reacts to the tx. Maybe a refresher course on the Possible Side Effects is needed.
This is the last post I will make on the issue because I don’t want to Hijack this man’s much needed thread.
Avatar universal
I understand the no control issue.  If you'll notice my post contains the words relatively the same experience.  There was no mention of side effects beyond one's control or to what degree a person experiences side effects. Of course circumstances beyond one's control occur, that is life without hepc or treatment.

My intention was to bring into focus how people can experience very similar side effects, the most commonly known side effects yet perceive it differently throughout the treatment process.  It is an individual experience and  how each person is effected is exclusive to that person.  I don't view it as wrong to say it depends on the person given there were no specifics mentioned.
1477811 tn?1321386453
I went into tx with a very positive attitude, thinking "mind over matter," after all, I'm a tough chic. Mind over matter went out the window and I've struggled on tx since about week 3. The low hgb nearly did me in. Lots of other sx; I can understand what curehepc is saying (and I'm sorry you're struggling so), but on the other hand, I imagine this is FAR easier than later stages of liver disease. FAR easier! Don't get me wrong, I'm not saying this is easy. I too feel as though I've lost part of myself, but I know I'll get myself back when it's over.

So, to Stevez, yes, it can be hard for some of us. It will change things in your life (I still work btw at a very stressful job), you may have to slow down, you may have to let people help you. As was mentioned above, it's the unknowns that are the scariest I think.

I have about 7 weeks to go before I'm done with tx. I've been UND since week 4. At around week 10 I had thoughts of giving up tx or cutting back on the meds because it was too hard. If I had to do it again though (hopefully that won't be the case), I would. A lot of people have diseases where there is no "cure," no hope. We do have hope, we do have these treatments, as harsh as they can be, and I for one feel fortunate to be able to take advantage of them.

Good luck,
June
Avatar universal
Very nice - thanks for that
Avatar universal
To Trish77 and all
Thank you for all your feedback, I feel I am no longer along.  You have made me feel that I CAN do this.  Single or living along with is, I take my hat off too you, you show me it is possible.  All the post have given me more insight of what is needed and what to expect.  I am going to educate myself & family on everything related to this.  Again I can not tell you how much all of your comments have lifted me up.  Through Gods help I will over come also.  My attitude is I CAN do it when the time comes.  I will post as I receive more information on my condition.  
SteveZ
1636196 tn?1337801300
It was the hardest thing I ever did to my self I to stop because sx and have restart BUT I WILL NEVER SAY I WISH I DID NOT DO IT AND ANY ONE WHO TX AND CAN NOT HANG IN I WILL DEFEND THEM TO THE END OF TIME It is some thing like you have never felt it is ging to have it's highs and many times lows but in the end you will say I DID IT I REALLY DID IT ( as  ted an bill said  STATION )
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