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Newly diagnosed with Cirrhosis and Hepatitis c

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Posted 5/30/2010 5:51 AM (GMT 0)
I am newly diagnosed with cirrhosis and hep c . Are there things I can not do as far as activities now? I have been told by a friend that is a nurse that it is bad for me to get hot and sweaty due to the fact it may cause me to die now unexpectedly. Some one please help me out with some information. My doctor has not told me much of anything other than a diagnosis and that I can undergo treatments for a year and be sick like I have the flu the entire time.
I will include my email here so that if anyone wishes to contact me via email or yahoo messenger please feel free to do so.
Thanks
Dee
dnm_linderatyahoodotcom
Posted 5/30/2010 1:53 PM (GMT 0)
The first thing you need to do is find a good hepatologist, have further testing and ask lots of questions. Have you had a liver biopsy, MRI, CT, or ultrasound? If not, more information is needed to get an accurate picture of where you're at. Some doctors seem to treat Hep C too lightly. It sounds as if yours isn't communicating very well. **David**
Posted 5/30/2010 5:21 PM (GMT 0)
The dr did run tests. he is doing more on the 9th. But has not told me much of anything as of yet.
Posted 5/30/2010 7:37 PM (GMT 0)

Hi, Dee Linder, and welcome to the forum.  Is the doctor who diagnosed you a  hepatologist?  If not, you should be referred to one.  Also be sure to ask what your test results mean.  It is not likely you will suddenly die if you get hot and sweaty.  I don't know where your nurse friend got that bit of info!  You can do whatever activities you feel up to doing. 

Yes, the current treatment is a combination of 2 drugs and it's a 48-wk. course.  However, there is a better treatment becoming available early next year that adds a 3rd drug and has a higher success rate, which only has to be taken for 24 wks.  I am waiting for that one myself.

The only symptom most people with hep C have is fatigue.  The danger is that it can lead to liver cancer (which happened in my case) and cirrhosis (which I also have.)

The most important things you can do for hep C are to abstain from alcohol intake, eat a nutritious diet (lots of fresh fruits and veggies and water) and get sufficient rest.  You will also need to make a decision about treatment.

Hugs,

Connie


Posted 5/30/2010 7:44 PM (GMT 0)
Thank you Connie. He specializes in all diseases related to the liver is all I know. I do not know what type of Dr. that is but I know he is a specialist in liver diseases.
I will continue with my diet and get plenty of rest. There are days I can not even get out of bed really due to the swelling in my feet and legs.
I wish the would give me something for the swelling soon.
Posted 5/30/2010 7:53 PM (GMT 0)

It's probably a hepatologist then.  And you need to ask about Lasix or Aldactone or both for the swelling.

Hugs,

Connie

Posted 5/30/2010 8:06 PM (GMT 0)
Thank you once again Connie. I will be sure to do that this week. I go see him again in another week but I will see if he can call me in a script for one of those.
Posted 5/30/2010 8:22 PM (GMT 0)
You also may want to consider taking a close friend or family member with you to all of your appointments. This will be very important to have a second set of ears. Also, like Connie said, just eat very healthy, limit your red meat (the liver has a hard time breaking down red meat), and also limit your sodium intake so help keep the fluid retention at bay. Rest and no drinking alcohol. If you smoke, you probably need to consider quitting. Making these type of changes can keep your liver very healthy. There are people who have cirrhosis and make lifestyle changes that go on to live very happy healthy lives. I do wish you the best and I am so sorry that you are having to go through this. Hang in there!
Posted 5/31/2010 1:05 AM (GMT 0)
Mer, thank you so much for your input. All well wishes and positive things go straight to my heart.
Can anyone tell me what I might be able to expect may happen within the next few years?
Posted 5/31/2010 1:56 AM (GMT 0)

Dee. liver disease is such an individual thing.  Also, it depends on whether you respond to treatment.  Hep C causes cirrhosis and liver cancer.  You've already been diagnosed with cirrhosis.  Did you have a biopsy?  With some people, the hep C virus very quickly replicates, causing ascites (fluid in the belly), varices, and end stage liver disease.  With others, the activation is very slow.  When you see your hepatologist again, ask him what your viral load is.

Hugs,

Connie

Posted 5/31/2010 2:14 AM (GMT 0)
yes , i am having a biopsy done on the 9th along with an upper and lower gi.i am not looking forward to those tests. i am gaining weight in my belly rapidly. 4 pounds a week just about. i bought clothes a month ago and they are tight already. at this rate i will be stuck in sweat pants soon.
Posted 5/31/2010 3:09 PM (GMT 0)

Hello Dee and welcome to HealingWell.  So sorry that you are dealing with this disease. 

Glad you found us.......as you can see we have lot's of knowledgeable compassionate members. 

Can't add much more at this time than the others have told you.....except for that in our educational thread there's a lot of good information that we put together from posts from some very dear members who were kind enough to explain liver disease in layman's terms so that it's easier for people to understand.  Please check it out is in the Resource post near the top of our forum. 

Also have you put your email address in your profile?  That's the safest way to do it.  So that only members have access to it.   I am going to edit your email on your first post so that spammers can not pick it up so easily.  If you have a problem doing it , let me know and I will walk you through it. 

Take care.......thoughts and prayers......


Posted 5/31/2010 5:30 PM (GMT 0)

Dee, the biopsy will tell more exactly how bad your liver is.  Also, if you have a swollen belly, that's likely ascites.  Ask your doctor about a diuretic when you see him.

Hugs,

Connie

Posted 5/31/2010 7:22 PM (GMT 0)
Thank you for everything. i will have a hard time posting from today on i will not have internet again til the 7th. we are moving and it will take that long to get service through another provider. i will try to check in via my cell as often as i can but do not know if i will be able to post or not. if you have new info please feel free to share it or send to my email. i can check my email daily via cell.
Posted 5/31/2010 8:10 PM (GMT 0)

Good luck with your move, Dee!  Once you get settled, let us know the outcome of your biopsy.

Hugs,

Connie

Posted 5/31/2010 10:13 PM (GMT 0)
i will be sure to do that Connie. We are scheduled for the 9th and I should have internet by the 7th.
Posted 6/1/2010 9:18 PM (GMT 0)
I was diagnosed with Hep C just this past January. I am Genotype 2 (which is important to know). I only have to take PEG interferon injections and Ribavirin for 24 weeks. At 8 weeks my viral load was undetectable and has remained so thru-out treatment. The MOST important thing I can stress to you and anyone considering treatments.. DRINK LOTS OF WATER!!! The medicine is highly toxic and can destroy other vital oragns. So, far it has destroyed my Thyroid. My platelet count has dropped to very low levels. My HBG and HCT count (Red blood cells) are dropping...losing some hair but no biggie, the damaged thyroid has caused my hands to shake. I have also began to see dark wooly floaters lately. This treatment can be very damaging to the retina. But understand it is reversible. My thyroid condition is not reversible and now have to be on medications for that for life. The BIGGEST complaint I have is the FATIQUE and flu-like symptoms. It feels like I have been ran over by a MAC truck. My body aches and run a slight fever with a slight cough. The fatique is debilitating. I am only able to be up for two hours the most at anyone one time due to the immense fatique. Also, taking these treatments can cause you to have depression...if you can just imagine...a person full of life and energy...always active..always busy...and now I am not able to do much at one time before I collapse with pure exhaustion. This is EVERYDAY.....so..you can see why someone could end up depressed with this treatment. I will continue for the duration of the treatment because I know there is a light at the end of the tunnel and soon I will be feeling better than I have ever felt in my life and THAT is what keeps me going. Don't give up no matter what you have to go through and it is ROUGH....don't let anyone sugarcoat it for you. BUT..it is worth it in the end....Take care and goodluck...keep drinking that water!!!!!
Posted 6/1/2010 10:03 PM (GMT 0)

Jewelz, thank you for your input.  If you would like to copy your post into a new thread (New Topic) and introduce yourself, that would be appreciated.

I'm glad to hear that the combo treatment seems to be working for you.  Those with Genotype 1a and 1b will have a new treatment available the beginning of next year, which is only 24 wks. long and has shown a 75% cure rate in trials.  I'm glad to hear that your treatment is only 24 wks.  I know that it can be very rough.

Hugs,

Connie

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