Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
Hi-
My husband recently tested positive for hep c. His mother also just tested positive so the biggest risk factor would be birth for him. He is 30 years old. His ast/alt levels were 120 and 60. I'm not sure which number goes with which level. I am beyond scared considering prior to this I had no knowledge of this virus. I had heard about it and thats it. I am waiting my test results and fearing the worst. I have shared a razor and toothbrush before. I was wondering if those levels sound dangerously high to anyone. Or the fact that he has had it as long as he has. I have been losing my mind the last few days with no answers. He can't get into the doctor until May 11th. I'm totally losing it and scared. Can anyone shed some light? Thank you.
My husband recently tested positive for hep c. His mother also just tested positive so the biggest risk factor would be birth for him. He is 30 years old. His ast/alt levels were 120 and 60. I'm not sure which number goes with which level. I am beyond scared considering prior to this I had no knowledge of this virus. I had heard about it and thats it. I am waiting my test results and fearing the worst. I have shared a razor and toothbrush before. I was wondering if those levels sound dangerously high to anyone. Or the fact that he has had it as long as he has. I have been losing my mind the last few days with no answers. He can't get into the doctor until May 11th. I'm totally losing it and scared. Can anyone shed some light? Thank you.
It's very rare to get it sexually. Have you guys been together a long time? Has the toothbrush and razor use happened alot?
The appt. you are waiting on is that to find out about his lab results..referring to genotype, viral load and to see a specialist?
Cindy
Cindy
And, if you want to research, Google... Mayo Clinic and read up on HCV and liver disease. They are rated up with the best at having cutting edge research and up to date tx. The Mayo we go to in Jacksonville, Fla. is also a transplant center. I'm not sure about the other two in AZ, and MN.
Have a good day, I'm going back to bed. I was up and down all night.
Cindy
I just got so scared again. Then I'm scared about what I might have to go through too. I'm sorry to bother all of you with this but I can't lay it all on him because I make everything worse. I wish there was some way for me to calm down.
I bought a juicer today. Are there any fruits we should stay away from? Any good juice recipes? I also found a book called the "the liver diet", I was going to get it tonight. It has a whole section on juicing.
I am most likely going to be repeating what others have already said but here goes.
First thing, hepatitis is often called the silent killer because there really aren't what you would call symptoms that stick out and are easily recognizable. Even the ones that exist can point to tons of other illnesses. Hepatitis just gets ignored and way too many drs don't even think to test for it. If you went to the dr complaining that you have no energy, and your joints ache, I doubt you would be tested for hep. Most people don't even know they have the virus, and only find out when someone they know is found to have the virus, so they get tested too. Just like his mother, and then he and you getting tested. Most people die WITH the virus, not FROM the virus.
Many people find out that they have the virus when they go for some kind of medical, or apply for some insurance. Others go to the dr when they are getting older and have some aches and pains, so they think maybe arthritis or something, then they get the news about the virus.
One thing for sure is you need to educate yourself because too many in the medical community know very little about the virus.
I know firsthand how drs are just clueless. I was sick for months, exhausted to the point where I was sleeping almost 20hrs a day, was unable to work, had joints on fire, and drs did tons of tests, but did they think of testing for hep? Nope. It took my passing out in the street and storming into the drs office, then refusing to leave till they did a few more tests and found the problem, before a bone specialist requested a test for hepatitis.
Stupid drs. Since then, I do my own research and quiz my specialist on everything.
Moving on, get used to waiting. You wait for tests, then wait for the results, then wait for more appts, then you wait some more. Stressing and fretting over the waits does nothing but mess up your body, Alwaya ask about how long you will have to wait then start waiting. If it goes past that time, call and ask how much longer and reason for the delay if known. Seriously, the waits suck but they are what they are. When I had any drs appt, I took a big bottle of water and a book, then settled in for the wait.
The numbers now. The ALT and AST could be high for any number of reasons, not just relating to the virus. My ALT/AST were low normal till half way through my doing tx, Just like his viral load number, they are not all that indicative of troubles. Some have high viral loads, some have low; the number can fluctuate for a variety of reasons as well.
ALT/AST explanation:
An alanine aminotransferase (ALT) test measures the amount of this enzyme in the blood. ALT is found mainly in the liver, but also in smaller amounts in the kidneys, heart, muscles, and pancreas. ALT formerly was called serum glutamic pyruvic transaminase (SGPT).
ALT is measured to see if the liver is damaged or diseased. Low levels of ALT are normally found in the blood. But when the liver is damaged or diseased, it releases ALT into the bloodstream, which makes ALT levels go up. Most increases in ALT levels are caused by liver damage.
The ALT test is often done along with other tests that check for liver damage, including aspartate aminotransferase (AST), alkaline phosphatase, lactate dehydrogenase (LDH), and bilirubin. Both ALT and AST levels are reliable tests for liver damage.
So you see, the ALT is mainly saying something about your liver. If it's sick and pissed off, watch that number go up.
The VL becomes important only if he is doing treatment for hep. Then he wants that VL number to go down and become undetectable; otherwise, it does not mean much.
The fear of the unknown; that's what freaks people out. Who knows much about hepatitis? Most people are kind of stunned and then freaked and scared because they don't know about it, so of course it must be horrible, right? Wrong.
Plenty of people choose to just live with the virus and do not want to do the treatment because they feel it's too harsh.
Plenty of people try treatment but it does not work at all, so they are just living with the virus till there is something new to try.
Plenty of other people do treatment, clear the virus, but then relapse, like me. They are also waiting for something new to come out and try.
It's really not as bad as you fear.
So first things first.
The test has been done that shows he's is positive for the virus.
They test for viral load, and for his genotype.
He should have a liver biopsy, so that he knows what stage and grade he is. If he has had the virus for decades, and yet still has no liver damage or inflammation, then he could very well decide not to do any treatment. Until he knows his viral load, genotype, stage and grade, he can't really decide what to do next.
Wait till he gets all that info, then sits down with his liver specialist to discuss his options.
In the meantime, there are some things that he can start doing right now.
If he drinks alcohol, stop all of it now.
If he smokes, it may be an idea to stop now because non smokers have better odds of clearing the virus with treatment.
If he has a few extra lbs, now's the time to get into shape because overweight persons have lower odds of clearing the virus with treatment.
One thing that many people do take if not doing treatment is milk thistle. He can start taking that as it's been shown to be good for the liver.
There are tons of info about herbs that are harmful to the liver, and which foods are most helpful in keeping your liver healthy. Many people on this site can help you in that area.
Now you can ensure you take the necessary precautions, keeping in mind that this virus is blood to blood transmission. That being said, there are so very many couples where they have been together for decades, yet only one of the couple has the virus. It's really tough to pass along, but still practise safety.
Be sure he gets and keeps copies of every single test that is done.
It will help to follow and chart his progress with the copies instead of having to remember what you were told was in the results.
Keep a list of any and all questions you have for his drs. Take the list with you to the appts and write down the answers. Don't try to remember it all; you will forget half of it, and mix up the other half.
Don't believe everything you are told; come home and google it all.
If you are told something that is not clear, demand an explanation until it's understood.
Always remember:
Take control. Keep positive.
I agree with almost all you wrote and we too had a bad experience with the medical care from the first tx. "But" it was our local family doctor who put the fear of God in him to get help. He told my husband that there was a tx for HCV and if he didn't do something about it he would end up getting a transplant.
His referal was to Emory Univ Hosp. in Atlanta, 2 hrs from our home town. The hospital was going thru major changes which meant alot of the drs were leaving. They were privatizing and no longer were a non-profit hospital. Emory University is a big teaching hospital and it was a major shock for us to find out our timeing was the pits.
Though I commend this dr. for referring him because he knew HCV was out of his realm of expertise, he did make a few mistakes like prescribing Reglan and sending him to Emory instead of Mayo. Reglan caused my husband to get very dehydrated and no one in either facility told him to drink lots of fluids.
I suppose what I am trying to say is our local doctors know they aren't skilled in this speciality of medicine. The internist we have now told us up front it was out of his league but he did help with pain and nausea meds and for his other routine care.
I think it depends on one's geographics that determines the quality of care that is recieved and how far they are willing to go to get the best care. Unfortunately, money and insurance dictates this to alot of folks.
Along with researching where the "top" leaders in the medical industry are located and are the best in there field is crucial in what we know now.
It is no different IMO than what I myself will do now if I have to go thru back surgery again. I didn't take the time to research my first surgery in 97 and have paid for it ever since. Unfortunately, some of us learn the hard way and when we are sick or in pain we are basically at the mercy of what's available. That is why people who have loved ones to help them are so blessed.
I have nothing but the greatest respect and positive words for the care he has recieved at Mayo. Even if the tx isn't a success I know he is at a leading transplant center and they have already discussed a plan on how they will be monitoring his inflammation. They made sure we understood that even if he becomes a undie he may still be facing "fatty liver disease" and that his life style has to change to stop it from becomming cirrohsis.
In the United States we are having too contend with "Managed Care" and the quality of care especially for inpatients is the pits if you aren't in the right facility and/or have a loved one staying at your side. We are blessed to have good insurance and I was determined to get the best care for him. Our family was long overdue for good medical care.
I lost my father 3 years ago to incompetent drs. in this area. I would not send my worst enemy to any of the places my father unfortunately went to because of his age and state of health. I remember pleading with him to go out of the area to let me take him to Mayo but he was sicker than we knew and wasn't thinking straight. He would be alive today if he had only listened.
On that note, I hope new members just learning of this virus will be patient and do there research. We know now that my husband has to eat lots of fruits and veg's and lean meats but he can't have foods that convert to sugar easy. He has to eat complex carbs and balance it with low saturated proteins. So, learning what fruits are low glycemic is important. Like Bananas are very high in sugar as is pineapple. He has to eat those sparingly and NOT with plain bagels like he used to do.
Ok, I'm super sleepy and am rambling now. Please excuse the bad spelling. I need to go to bed.
Congrat's to Robfed for testing neg. The worrying about passing it on to your children shouldn't even be in the equation at this point in time and will not be if you are careful keeping them away from toothbrushes and razors.
Goodnight,
Cindy