Let’s see…what to write about tonight….

I had a rare burst of energy tonight and exploited it to the fullest. Got laundry sorted and the bathroom cleaned..and now I’m typing on my blog. Gold star for me!

I think I’ll explain how I found out about my hepatitis.

I have had fatigue problems since about 4th grade. I was diagnosed as anemic in 9th grade, and for awhile iron supplements helped, but not completely. I’ve also had problems with digestion starting in 8th grade (might be unrelated to HCV, but I don’t think so). I was never satisfied with the dismissal of these problems by my (many) doctors, and over the years I would sporadically research causes for fatigue and IBS. Eventually–via an article about IBS, actually–I started reading about Hepatitis C.

I began reading about symptoms and risk factors. I realized that I had one of the risk factors–blood transfusions prior to 1992–and I decided I needed to get checked. At my next OBGYN appointment, I asked to be checked for STDs, since Hep C screening is a part of that and I didn’t want to come right out and say, hey, I think I might have Hep C. I had approximately seven blood transfusions as a premature infant, but I figured people would assume I got it through using drugs or through sex.

Sure enough, I tested positive for the HCV antibody. Even though I had asked for the test, I still didn’t REALLY think I would test positive. I got the call while I was at my desk at work, and I felt like someone had hit me in the face with a ton of bricks. All I could thinkof (and I know this is stupid) was, Oh my god, people are going to think of me and Pam Anderson in the same thought! GAH! I left work and had a panic session followed by a nap. When I woke up I started my fall back activity–researching.

The first thing I did was to google “false positive HCV antibody test.” Unfortunately there aren’t a lot of false positives that happen. There ARE false negatives, which occur when people with a supressed immune system have HCV but aren’t manufacturing the antibodies. At first I was disappointed about that, but after thinking about the implications I decided that I would actually rather have HCV than have an immune system so effed up that my body couldn’t even start to mount an antibody defense to an infection. Then I saw that of people with a positive antibody test, about twenty percent have the antibody but do NOT have HCV, because the antibodies did their job and eradicated the virus while it was still in the acute stage. I pinned my hopes on that, and contacted my primary care doctor for a consultation and the further testing that I now knew I would need.

My doctor was very professional about everything. She asked how I thought I got infected, and I told her. She had my blood drawn for the PCR test that would determine if I had a chronic Hepatitis C infection, and a liver panel to see how my liver was faring. I did ask her if we should test for my HCV genotype, and she said she didn’t think that was necessary. She was wrong, but more on that later. When my results came back after about a week, it showed that not only was the Hepatitis C active, I had a relatively high amount of the virus in my system–over 2 million per microliter of blood. This measurement is referred to as “viral load” and indicates that the virus is active. Pay close attention: this ONLY indicates that the virus is active. It does NOT indicate the severity of the virus or the amount of damage that has been done to your liver. People with low viral loads can have severe damage, and people with high viral loads can have very little damage. One of the many strange things about this virus.

My liver enzyme levels (main ones to remember are ALT and AST) were normal, and always had been according to past blood tests. This and a normal ultrasound indicated that my liver has not been damaged much, if at all, by the disease. A liver biopsy or CT scan would be the most accurate measure, but aren’t indicated in cases like mine.

My doctor referred me to a gastroenterologist, but that person couldn’t see me for three months. I called around and found a gastroenterologist specializing in hepatology (liver stuff) in a nearby town who could see me in two months. In the time between my diagnosis and my hepatology visit, I kept my mouth shut about my condition. I did call my uncle who also has hepatitis, and he was able to calm my nerves and talk to me about what to expect, but I didn’t tell the rest of the family. I wanted to wait until I had more definite information to give them.

Annnd I’ m going to save how I told them for next time, cause I am running out of juice. To be continued.