Help me understand fibrosis and hep C

[Vivika]

Hello all,
I am new on forum
I hope you help me

My boyfriend (29 years old) was diagnosed with hepatitis C about 7 months ago, viral load was 20 mil. and he started treatment interferon+ribavirin immediately,
after 6 months of treatment viral load became 60 millions.
His Doc. said he is non-responder and also he has fibrosis on left side of liver with 35 %. ( by reading your posts there is stages which nobody mention us)
He vomiting blood very often, and next week he will have liver surgery (removing scarring tissue)

we don't use alcohol or any drugs, never used, drinking alcohol for Christmas or b-day party with few glasses of vine or beer
he was often feel pain in back and taking tramadol and often getting flue but we never ever thought of anything like hep C, till he one day start vomiting blood and we went to doc.
we live 2 years together, my test was negative, we don't know how long he had and how he get it and even he have fibrosis and in last 6 months he every day feel more and more sick (tired, dizzy, sick)

is it normal vomiting blood so often, is surgery going to help ?
he is 29 years old, how long it can take till he get cirrhosis or cancer

our first doctor who gave him the therapy with last results told him he have turned in to cancer than
his parents asked second thought from another doctor and came to us with results that doesn't show cancer
I am terrified, feel helpless

I am not native English speaker i apologize if i make mistakes

Vivika

[eureka254]

Your English is very clear for someone not native! Your boyfriend is lucky to have you by him, and I'm very glad to hear that he has awakened.  My husband also had part of his liver removed in 2007 because of a large tumor, and it took him a day or so to wake up.  I hope your boyfriend will recuperate quickly.

You mentioned your boyfriend vomiting blood before his surgery.  Did doctors do any testing or perform any procedures before or after his liver surgery?  His condition requires close attention and careful monitoring, and in some cases intervention may be necessary.  The hope is that the surgery was successful in removing the tumor... did doctors say what kind of tumor he had?  I hope your boyfriend will be up and walking around soon.

Every patient is different; he may need only a week in the hospital, but he may need two weeks or more, depending on how much liver they removed, and how severe his liver fibrosis (cirrhosis) is, and whether or not he develops complications.  There may be helpful information provided by the portion of the liver that was removed (pathology), so if it is possible to get a copy of the report, that might be helpful for you and your boyfriend.

Do not be surprised if it takes a few days for your boyfriend to be aware and himself again.  When he is able to get up and about, it is best for him to walk as much as possible. My very best wishes to you both, and take care of yourself.  ~eureka

[cieritaqt]

Hey, you're English is great! No worries, it's nice your boyfriend has your support. It sounds like he may have had hep C for a while now. I'm not a doctor, and I am just learning more and more about the medications availible to us each day. Maybe encourage him to get a second opinion from another doctor as to what the problem is. There are different treatments availible for people with different genotypes of Hep C. I hope you find the information you're looking for on this forum. Welcome, and you are in my thoughts and prayers.

C

[crossroadsec]

Vivika- So glad he is awake. I hope you can understand all the good information you were given on these posts. Write notes to ask the Dr. about. It's easy to get tired and confused when your loved one is sick. Lots of love and prayers. Take care of yourself too! Karen

[elpasolady]

Vivika-
Just saw this post from you.  Glad he is awake now!  
How is he now?
What have the doctors told you?
You all are in my prayers!
Big hug to you!
Debbie

[Vivika]

He wake up after 48 hours been in coma

Vivika

[nomorehepcliz]

I don't know anything about it, but my thoughts are with you!

[Vivika]

His surgery was in Sunday, and he still didn't wake up it's been 40 hours now
do you know from any experience how long it take to wake up from anesthesia after surgical resection

vivika

[elpasolady]

Vivika,

Hector has given you a wealth of wonderful information. Knowledge is power and I hope you can take some of this new information and use it to help your boyfriend.  Don't be afraid to ask his doctor questions or to question the doctor. Make them tell you everything that they know.
It's great that his father is a doctor.I'm sure he had many connections in the medical community.  That is an excellent advantage in favor of him getting the best treatment in your otherwise bad health care system.

My heart goes out to you!  I understand there is so much you are having to deal with suddenly. Like Hector said, you both can get through this together. He is still so young. Make sure he keeps strong mentally so he can fight this with you by his side.  I know that is an easy thing for me to say, but i am a firm believer that attutide and positive energy are a crucial ingredient in anyone's journey and recovery.

I'm sorry about the loss of your father. He must have been quite young

Keep us informed and may God bless you all!
Debbie.

[Vivika]

Hi Debbie and Hector,
thank you for your answers and speaking the truth, that's what I need,
I hope I can help him more in this way by know whats going on with him.

I am very confused and unfamiliar with this as all this happen to us in a very short period I mean since we find which disease he have.
Our health system here is very bad, you will not find much doctors speak open and hardly u will get explanations of your questions.( you will be Ok, keep taking the treatment and we will see next results - That's the most common answer you will get from them)
Health insurance doesn't cover any treatment for this disease, everything you have to buy from own pocket which is so much expensive, even visiting doctor in private clinics also cost alot.

When he started the treatment he start with 20 Mil. viral load and later was raising not reduce, went to 40 Mil than fall to 30 Mil than 60 mil and and after 6 months therapy doctor said it will stop because it doesn't response to it.

He did ultrasound and after this doctor told him it is cancer than his dad arrange another examinations and the other doctor said it is not cancer but now after Hector explained to me I doubt they told us the truth.

His father is a doctor for primary care and all doctors we visit are recommend by him, I guess he knows the results before we know and what is told to us is far different than the truth.
I realize now how naive I speak about liver surgery with fibrosis, but this is what is told to me :(

last days he vomiting blood few times at day, surgery will be in UAE as his parents lives there over 30 years and they arranged there

My father died from bladder cancer 3 years ago I'm still recovering from that lost, my bf is so depressed and me day by day I feel story repeats.

Thank you for your support & hugs for both of you

Vivika

[HectorSF]

Sorry I forgot.

Fibrosis develops over time. When the fibrosis becomes advanced the liver then starts to scar. This is what is called cirrhosis (the last stage of liver disease). The scaring causes the blood to be unable to flow through the liver normally so the blood starts to flow through other veins. This is what causes varices to develop.

Metavir
The Metavir scoring system was specially designed for patients with hepatitis C.  The scoring consists of using a grading and a staging system. The stage represents the amount of fibrosis or scarring.  

The fibrosis score is also assigned a number from 0-4:
• 0 = no scarring
• 1 = minimal scarring
• 2 = scarring has occurred and extends outside
         the areas in the liver that contains blood vessels
• 3=bridging fibrosis is spreading and
connecting to other areas that contain fibrosis
• 4=cirrhosis or advanced scarring of the liver

Hector

[HectorSF]

Your English is fine. Much better then my Bulgarian. ;-)

I will try to answer your questions in the order you wrote them...

You say your boyfriend is going to have liver surgery. "removing scarring tissue". Maybe you mean they are removing part of his liver which has the cancer tumor(s) in it? Do you mean "Surgical Resection"? This is usually only done in patients that do not have cirrhosis. Which is rare. The vast majority of patients with liver disease have cirrhosis.
Scaring of the liver can not be removed. Scaring of the liver is what is called cirrhosis. Stage 4 liver disease.

"Every day feel more and more sick (tired, dizzy, sick)" This is how a person with advanced liver disease feels. I have felt this way for 2-3 years now. There is medication that can help with these symptoms and he should be prescribed them by his doctor.

Your boyfriend needs to never drink again. Not one drink ever again. Alcohol is toxic to the liver and will make everything worst. It could even be fatal.

The reason he is always getting the flu is his immune system is week and unable to fight off virus, bacteria extra. For a person with advanced liver disease virus infections or bacterial infections are very dangerous. They can lead to hospitalization and liver failure. His doctor should be tell him this. A person with advanced liver disease must change their way of living to prevent making their illness worse.

I have no idea how the health system in Bulgaria works, so I am basing what I say on my own experience living here in the United States and being diagnosed with End Stage Liver Disease (ESLD) (decompensated cirrhosis) and liver cancer.

"Is it normal vomiting blood so often, is surgery going to help?"
It is not normal. It is a complication of cirrhosis of the liver. It is called "bleeding varices". It is life threatening and can be fatal. There are a number of things that can done to prevent a person from vomiting blood. Here is the U.S. patients are proscribed “beta-blockers”. This is an inexpensive drug, such as "Nadolol". It reduces the increased blood pressure that is causing the veins in the esophagus. To stop the bleeding "banding" of the veins is preformed. The enlarged veins are tied off so no blood flows theough the weak walls of the veins. There is also a procedure called TIPS (transjugular intrahepatic portosystemic shunt) that can be done to lower blood pressure through these veins. IMPORTANT: Unfortunately, once a patient has one bleeding episode they are likely to have future episodes. Another very important point that you and your boyfriend should understand and the doctor should have already told you is that these bleeding varices can cause death. I don't say this to scare you. I am sorry if this is the first time you are hearing this but it is true. Anytime your boyfriend vomits blood or has black, tarry or bloody stools he needs to be taken to the hospital as quickly as possible.

Here is an article that explains the basics of varices.
http://www.nlm.nih.gov/medlineplus/ency/article/000268.htm

http://en.wikipedia.org/wiki/Esophageal_varices

"Our first doctor who gave him the therapy with last results told him he have turned in to cancer than his parents asked second thought from another doctor and came to us with results that doesn't show cancer".
Diagnosing liver cancer is not an easy task. It takes very experienced technicians and doctors to make the diagnosis and the correct imaging equipment. Ultrasound, CT, and MRI. If the cancer is small a MRI or a special test with CT machine can usually tell if it is cancer or some other lesion (growth). These visual images are combined with a blood test call AFP to diagnose liver cancer. That two doctors could disagree is not uncommon. Here is the U.S. we have "tumor boards" of radiologist, oncologists (cancer doctors), surgeons to help determine if the lesion is cancer or not.

I hope you boyfriend is getting help at the best hospital in the area. He should be treated by a hepatologist. They are liver specialists and are the only qualified doctor for treating advanced liver disease. From the information you provided your boyfriend may need a liver transplant at soon point so it is best if he is seeing a hepatologist are a liver transplant center.

Finally… Your boyfriend really needs you now. What he is going through is probably the most difficult thing he has ever experience in his young life. I know it is frightening and very difficult for the both of you. You boyfriend is very young so his body has a better chance of surviving through his illness then myself who is 59 years old. So that is good. From my own personal experience I can tell you that the most important thing in his life now is you. Your love will help him to fight his illness and give him a reason continue to fight his illness. If you can, be with him, listen to him talk about how he feels, but most of all tell him how important he is to you and how much you care. This experience can bring you closer together then you ever imagined.

I hope this helps you and your boyfriend. If you don't understand something I said just tell me and I will do my best to help you both.

Please keep us informed about his surgery.

Hector

[elpasolady]

Hi Vivika,
First, I would like to welcome you to this forum. You have made a good decision coming here. There are many people on here with extensive knowledge about Hep C, fibrosis, cirrhosis and liver cancer.  And, don't worry about not being a native english speaker.  I understood everything you wrote.

Hep C is a very very slow, progressing disease, usually. It generally takes 30 -40 years for anyone to have symptoms and even then, some do not.  Some people will get sick earlier than that, but most don't.  For example, I have had it for 33 years and I still show no symptoms and have little damage to my liver.
The fact that your boyfriend is so young and his liver is already so damaged, makes me think he has had this for a long time. perhaps he was born with it.  Has his parents been tested  to see if they may have it?

The drugs your BF was on for treatment can have many bad side effects. His doctor should have warned him of all of this.  The interferon can cause you to feel like you have the flu, ( headaches, fever, chills, naseau, muscle aches, etc).  The Ribavirin can make you feel very tired and weak and can make a person anemic.  The drug is meant to bring down your red blood cells in order to work on the hep C virus.  It can also cause a rash on the body.  My guess is that the sickness he has been feeling is due to the drugs he was taking for treatment.

I will let someone else speak to the liver surgery, because personally, I have never heard of anyone having that to remove fibrosis.
As far as the vomiting of blood goes, it COULD be a sign of cirrhosis.  Remember,I am not a doctor, but I have read about that on this forum from those that have experienced it. I don't mean or want to scare you, but when you ask questions here, you do get answers.
I hope someone else talks about this with you who knows more on this subject.

Just as a side note, here in America, if someone is on treatment and their viral load does  not get down to a very low number in the first 12 weeks of treatment, they are taken off the drugs and considered a non-responder, just like your boyfriend.  Did his viral load get way down when he first began treatment and then rose again?  I am simply curious if in Bulgaria the doctors treat this the same way  as here?

I wish your boyfriend all the best in this difficult situation and that goes for you too.
Hang in there.  
Hugs to you!
~Debbie~