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27 and living with hepatitis c

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Posted 5/11/2008 7:52 PM (GMT 0)
hi all,

i got diagnosed five years ago, i had a biopsy four years ago and i am terrified to go back and have another one...... the results were good, very little damage done. the doc wanted me to have another one done two years ago but cant bring myself to get it done...... i suppose im hiding from the reality of what i actually have.

i have two beautiful children and a lovely husband who loves me to bits so things are'nt too bad at all :-)

I am terrified by hepatitis and cant help thinking about what if and when????? when it catches up with me, how i am going to suffer with the disease, if i will live a healthy life.

 At the moment i feel good i dont really feel anything from the hepatitis apart from a night out, the next day the guilt sets in and i can feel it in my liver, i cant function...

if anyone is reading this i would love to have someone to chat with who is in the same situation

Posted 5/12/2008 4:15 AM (GMT 0)

Sashakate, have you had any treatment for the hep C?  After trying it in '93 and not doing well on interferon, it was stopped.  From that point until 2 years ago, I pretty much ignored the fact that I have hep C.  Aside from fatigue and only being able to work P/T, I felt okay.  I was having sonograms once a year to monitor my liver.  The one I had 2 years ago showed a huge cancerous tumor.  It was treated as a death sentence at Shands, so I went to Mayo and they saved my live.  I'm living on just the left lobe of my liver now, and treatment is again being considered...this time the "combo."  I have to have a 2nd hernia surgery before that, though.

I think you know what you have to do.  You wouldn't have posted if you weren't concerned about what might be happening with your liver.  I will say that I haven't had a drink of anything alcoholic for nearly 22 yrs., so that did not play into the creation of the tumor...that was caused from untreated hep C.  So I urge you to go to a hepatologist or GI doc and have another biopsy to know where you now stand...and then decide what to do after that.  And please--don't drink anything alcoholic at all.  That is the very worst thing you can do to your liver.  You can go out and have a good time without drinking alcohol.  Drink no-alcohol beer if you are tempted to drink and your friends are drinking.

I've done the ostrich thing (head in the sand), and I'm telling you it's a very dangerous thing to do.

Hugs,

Connie

Posted 5/12/2008 6:35 AM (GMT 0)
hi sashakate,

I am sorry that you have to deal with Hep C. But hopefully, you will be able to be successfully treated before it severely damages your liver. While there is no doubt that either sooner or later it will become difficult in addition to scary, it can be treated and it's possible that you can have a relatively normal life.

I was 27 when I was first diagnosed with Hep C. I am now 57 and my symptoms began 4 years ago and became serious last year. No treatments and no special care since until recently there was no treatment -- by the time treatment was available, the side-effects of Hep C had reduced my platelet count to where I couldn't be treated. Everyone is different so you may face a totally different scenario. My point is that with minimal intervention, there may be many years without serious symptoms. You must stop alcohol completely if you want to avoid certain early cirrhosis.

If I were you, I would press for non-invasive evaluation of your liver -- unless the doctor can convince you that a biopsy is absolutely necessary. Using blood tests, ultra-sound and MRI, they can tell most of the critical facts about your liver's Hep C and cirrhosis status. You may want another doctor's opinion on the biopsy.

I am no expert but was told that unless the non-invasive tests show that the liver is severely compromised, or if they suspected an overly fatty liver, and unless I was ready for surgery, not to bother with the biopsy. I now have had Hepatitis of one type or another (A,B,C) for over 40 years and am now on the liver transplant list, and still have never had a biopsy. But your doctors know best -- although sometimes it pays to challenge them so they think things through when they have to defend a position.

I wish you well in your challenge. And please know that there are many forum members here who have seen and know much, both as patients and caregivers. Being able to learn from their experiences and to share with them has helped me immensely. I hope that it helps you.

Be well, John
Posted 5/12/2008 8:32 PM (GMT 0)
John,

I was just wondering why the DR. told you its best not to have a biopsy? Thats the first thing that my DR. told me I needed to have done. He said thats the ONLY real way to find out what shape the liver is in. Now I am wondering If I need one.

 It is so scary not knowing what you really need to do and to think of all of the stuff that can happen if you do it and what can happen if you dont.

 My DR. told me that from my blood work he didnt think I was in bad shape but then said I needed the biopsy.  I am wondering if they dont send everyone for one for the $$$$$...Sorry but I am sceptical about stuff.

 I have a question to anyone who might be able to answer.. Does you viral load have anything to do with how bad you are or how sick you are? They said mine is 204,000 and I have seen on here where some peoples Viral load is in the Millions.

They are so many questions it makes me feel like a big dummy.

Posted 5/12/2008 11:53 PM (GMT 0)
Back in '93, I was told that the only way to find out if the hep C was active was to biopsy the liver. Has that changed? Also, cirrhosis never showed up on my innumerable CT scans and MRIs...only when a biopsy was done of the left lobe of my liver when the right lobe was removed in May '07.

Hugs,
Connie

Post Edited (hep93) : 5/15/2008 11:34:12 PM (GMT-6)

Posted 5/13/2008 12:35 AM (GMT 0)
Hello, i'm very young and i don't know if what i can say to you will help but i would like to try. My father has had hepatitis c since he was in his 20's.. He hates doctors and there were no symptoms so my family didn't realize he was sick until he was in his 40's and the disease had gone too far for any real hope. I realize you were diagnosed and you realize what's going on with you, but for your children and husband please get it checked out. I will pray for you and your family. I pray that everything for you goes well and i pray that you can have the peace to deal with whatever you are given. Good luck with everything!
Posted 5/13/2008 5:52 AM (GMT 0)
Hi soonersfan1,

I don't want to second guess anyone's doctor. That being said, for four years my neighbor was a liver researcher at Yale / New Haven Hospital and Bayer Pharmaceuticals. He was only eclipsed by his father, a well-published liver researcher in Charleston.

When I was first addressing my growing symptoms, his opinion was that the cirrhosis was only as important as its impact on the liver's operation. He suggested that to do a biopsy just to judge the level of cirrhosis was interesting but unless I was ready for a transplant, it was simply interesting and not critical. His take was that the important thing was the liver's operation -- how well was it doing its job. In my case, blood work showed the level of efficiency of the liver (or lack thereof) and an enlarged spleen indicated the level of back-pressure caused by cirrhosis. Physical external probing indicated the hardness of the liver from cirrhosis and ultra-sound and MRI showed no tumors. If the liver had not been hard to the touch, then perhaps a biopsy would have been necessary to determine whether the liver was clogged with fat.

My doctor had automatically suggested a biopsy -- and probably both as a justifiable diagnostic and billable procedure. When I suggested the above arguments against biopsy, he reluctantly agreed that it was not critically necessary, but rather would be a reinforcement and refinement of the known status of the liver. Remember that in my case, I had Hep C in my system for many years so the first assumption was not whether I had cirrhosis, but to what degree had it compromised my liver. At the time, my blood work showed that I did not qualify for a transplant and that my reduced platelet count disqualified me from Hep C Interferon treatment (it reduces platelet count even more). If I could have found a Hep C Interluken trial, that would have been OK but the cost of regular Interluken treatment is too high for insurers to pay.

So please, no one make medical decisions based on my story. Talk to your doctor and don't hesitate to ask questions, or get a second opinion. I am convinced that I avoided an unnecessary procedure (in my case) by asking questions and challenging (politely) whether it was really critical to my treatment. A good doctor is to be trusted, and a good doctor takes the time both to educate you on your condition and to listen to your questions.

sashakate - There are many who know more than I so my only real advice is to anyone with Hep C is to aggressively seek treatment and don't drink. Find out if you can get Hep C treatment and investigate what the new up and coming treatments are.

Connie - You listened to your doctor and you're here with us so obviously you got good advice and treatment. My understanding was that the only way to find out if the Hep C is active is through blood work (but I am not always right and I don't always remember clearly), and yes, I was told that cirrhosis would not show up on CT Scans or MRIs.

I wish everyone well and hope for better health for us and our loved ones, John
Posted 5/13/2008 7:36 PM (GMT 0)
hi everyone again.....

thank u all who have replied and your words of wisdom.... :-)

After reading your relies to my post a booked an appointment in my hep clinic where i have not been for a few years, i went today and it was'nt too bad as i was dreading.

i have to return in eight weeks again to chat with the doctors about going back on the interferon and riboviron. i was taken off it after two days with an allergy they thought i might have to it but they are now going to get the allergy team to run a few tests to see if i can return to the program so fingers crossed for me????

 

Posted 5/13/2008 8:46 PM (GMT 0)

you really need to stop drinking, it's the #1 best advice anyone can give you besides finding a good hepatologists so they can help you.

Posted 5/14/2008 4:32 AM (GMT 0)
Hi sashakate,

Good for you. All of us are cheering you on and hoping for the best possible outcome with the least discomfort and aggravation.
Our thoughts are with you.

Be well, John
Posted 5/15/2008 1:43 AM (GMT 0)
Hello Sashakate, And welcome to HealingWell.

Remember knowledge is power. Good luck with the testing.

Take care.....thoughts and prayers.
Posted 5/16/2008 5:40 AM (GMT 0)

John, thank you for your very informative and interesting post.  At the time I was diagnosed with hep C ('93) through blood work, I was told that the only way to know if it was chronic active was through a biopsy.  Perhaps that is no longer, true...I don't really know.

Sashakate, so glad you are being seen for your hep C!  That's the first step to a healthier you. 

Hugs,

Connie

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