I’ve been meaning to make an updated posting but more stuff kept happening in my life. So I kept holding off planning on making the posting when I had more information. Just to update from my last post, I gave in and am paying the $30 extra a month to have my TV channels back. Just as I got the news about the lesions on my liver and losing the TV channels, I got news that a good friend of mine from Montreal passed away. She was the second close friend of mine to pass away in a very short period of time. I was beginning to feel like a boxer in a ring taking one punch after another. I really was finding it hard to take. It seemed like misfortune was taking over my life in a big way.
Medically I’ve gone through a few big changes again. I talked about my recent liver lesion diagnosis with my Long-term Survivors Group. I mentioned my concerns about my seemingly fast progression in liver damage. I feared that I seemed to be in a steep, consistent incline (Or decline depending on how you look at it). One of the members of my group talked with his primary HIV Physician, who is one of the best in the country about me. He laid out my story and asked her that if she were in my shoes, what would she do? She said that if it were her she would get a referral to see a Dr. Wong, who is one of the best Hepatologist in the country. I had seen his name before on so many studies I had read. I also know that my previous Hepatologist would talk to him as a sounding board for ideas for me. I really liked my previous Hepatologist as a person and I feel that is important, so I was not sure what to do. Then I thought that I may as well cut out the middle man and go to the top dog so to speak. So I explained this to my new doctor and ask him to make a referral to Dr. Wong. He warned me that I’d probably wait 8 months, but I told him to do it anyway. Imagine my surprise when I got a phone call back informing me that I had an appointment with him in a few weeks.
My first appointment with Dr. Wong was encouraging. My blood work related to my liver functions are alway high, but there is one that is always extremely high. I had never even hear about it until about three years ago and quite by accident. I was seeing a specialist about something else and said, “Wow, your GGT is really high, what have they told you is causing this?” I had to confess to him that I had never heard of GGT before so he showed me it on the chart. The maximum normal level was 40 and I was over 900. He told me to ask my doctor about it because it should not be that high. I asked my doctor and got sort of the same reaction. “Wow, that is really high, make sure you bring it up next time you see your Hepatologist.” The Hepatologist was stunned by it too. “Has it always been this high?” I was asked. I told him that I had not even heard about it until recently. So he said that we would keep an eye on it. Every time the count was way up there. Always between the 900 and 700 mark. The last conversation I had with my old Hepatologist gave no new answers. He knew that the count was extremely high, but couldn’t figure out why that would be. He even doubted that GGT was a count that mattered much.
Imagine my surprise when Dr. Wong zeroed in on my high GGT right away. “Your GGT is so high, why have they told you it is so high?” So I explained to him my history with GGT. Dr. Wong’s opinion is that there is defiantly something going on with my liver. “There is no way that your GGT would be that high without an underlining reason,” he told me. So he wanted to do test to try and figure out what is causing these high GGT readings. One thing we did notice was that my short stint on treatment seemed to affect them. Before treatment I was over 900 in range and after treatment I had a reading around 399. Dr. Wong is also skeptical that my liver damage is as high as the test are indicating. He can not understand how someone’s liver could get so damaged so fast. Since I had such a bad experience with my first liver biopsy I have not allowed another one. So I have only allowed Fibrotest to be done. It uses some markers in the blood to come up with a number. What it is a marker of I’m not sure. All I know is that the numbers of the Fibrotest give an estimate of how much liver damage there is. According to the Fibrotest number, I have grade 4 inflammation. According to Dr. Wong fatty liver, which I have, can trick the Fibrotest into giving a false high reading. He believes that is what is happening with me. So he booked me for a Fibroscan a few weeks later.
When I went for the Fibroscan I explained to the nurse that Dr. Wong believes that my fatty liver was tricking the Fibrotest and she told me that fatty liver can trick the Fibroscan too. The Fibroscan consist of a machine thumping against your side and sending a shockwave through the liver. The harder the liver the slower the signal takes to pass through. Fatty liver can slow the waves too I was told. I was surprised that they showed me the results of my Fibroscan right away. I am used to having to wait until they send the results to the doctor and then getting the results from him. According to the Fibroscan I am worse off than the Fibrotest. The Fibrotest says grade 4 inflammation and the Fibroscan says cirrhosis. I wasn’t sure if I now had to wait until my next appointment with Dr. Wong before we set up more test, or if he would try to do test before hand so we would then have more answers. So I called two weeks ago and asked. They called back with a booking for a liver biopsy the following week. I had already come to the decision that a liver biopsy would be in my future and I’d just need to do it.
So I had the biopsy done a few days ago. This one went much more smoothly than my first one. I had a little pain and pretty bad nausea the day of and the following day. Other than that I had some pretty bad fatigue the next two days. I gave in and went to the emergency last night just to make sure I was not experiencing some complication. “After having such a smooth procedure, watch me have a complication now,” I thought to myself. Everything seems to fine. Now I guess I’ll get my results when I see Dr. Wong in the new year unless there is something that causes them to call me sooner. I am quite anxious to find out what they see when they put that little piece of liver under the microscope. Will I be told that my liver damage is actually lower than thought, or will I be told that the Fibrotest and Fibroscan are not lying to me? See, just like I told you. Anxious! So I guess that I’ll post again when I have more to report.
Cheers until then,
David McHep C
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