Background: Pre-2000 Information

posted 2000-Apr-6
— updated 2000-Apr-10

As noted on the Hepatitis C site home, I found out that I have Hepatitis C when the Red Cross implemented a screen to test for it on some blood I donated. (A sad side-note is that this certainly wasn't the first time I had given blood--I really enjoyed doing it and gave what I now assume was infected blood on many previous occasions.) I'll never know how or when I got it, but a strong candidate is that I've had it since I was an infant in 1973.

In 1994 I had a liver biopsy done. I have read others' experiences on the 'net saying that it's not a bad ordeal. I disagree--the ordeal can be quite nasty. Here's what happens in a liver biopsy (or at least in this case):

  1. You check into the hospital and get into the lovely gown which is prone to giving free shows of your butt without warning. Get into the bed and wait.
  2. The doctor (in my case a woman with terrible bed-side manner) shows up. [In my case she first gives a biopsy to a man in the same room behind a curtain, who repeatedly moans and cries out during the procedure while the doctor snaps at him and tells him things like "oh that doesn't hurt" in the condescending voice one would use with a dog. Not terribly encouraging to me, lying there waiting.]
  3. The doctor inserts a needle into the muscle between two ribs on your right side and injects novacaine.
    I've read some reports that this is a small pain, and short-lived. My experience--it hurt like the dickens. It burned like hell. It was probably mostly over in 15 seconds or so, but that sure doesn't mean it didn't happen.
  4. After tapping around on your rib cage to find the liver, the doctor marks a spot between two ribs and pulls out a long, long needle.
  5. The needle goes in-between the ribs and into the liver.
    Some people have written that the liver has no nerve endings, so this doesn't hurt and you can't feel it. Not true. It doesn't hurt like you normally think of pain. It feels Wrong. Bad in a way that's hard to describe, but I'll try: Take a broom handle and punch it hard into your stomach. (This isn't the sensation.) 5 minutes later, think about the way your stomach feels separate from the bruising of your abdominal muscles. There's a real wrongness inside.
  6. The doctor does something with the needle which makes it quickly pull on the plunger, sucking out a thin piece of your liver.
    Or doctor missed the first time, pulled out the needle and inspected the rheumy contents to discover a whole lotta some fluid, but no piece of liver. So in it went again, pop it went again, and this time there was a small chunk of my liver floating in the syringe.
  7. You recover. You wait in the hospital for a few hours, lying only on your side. My side hurt quite a lot...I had to get some pain-killers to deal with it.
  8. You go home, and for the next few days your muscles really hurt in your side. They tell you in no uncertain terms that while they object to being harshly overworked, they really object to having something stuck right through them.

So that was my biopsy. Interpretation of the results (putting my liver on a slide and looking at it closely) showed that there was a minor amount of scarring and a minor amount of inflammation. (More precise information later, when I pull out my file to update stuff.) Meeting with Dr. Sanjiv Chopra, a liver specialist at Beth Israel Hospital, we discussed the results and the possible treatment options.

At the time the best treatment was giving yourself a shot 3 times a week of Interferon (which has some nasty side-effects) for 1 year. The end result was around a 25% chance of knocking the virus down to undetectable levels. (The current treatment is similar, but with the addition of taking ribavirin pills orally, 6 per day, during the treatment, which raises the chances to around 45% overall. It also adds some new possible side-effects.

Given that the virus seemed not to have done much damage, nor to be doing much damage; given that we suspected that I'd lived with it lying mostly dormant my whole; and given that the treatment was so nasty with such a poor chance of success, I decided to wait and see if either the virus went active and started attacking my liver more, or if a better treatment came along.

To monitor the disease I was told to get blood tests every 3-6 months. These tests measure ALT (alanine aminotransferase) levels, also known as liver enzyme tests. They are an indicator of how actively the liver is defending itself against attack. My ALT counts were consistently very low for someone with hepatitis--just above the high end of a normal range. I got the impression that I could ignore the disease.

I didn't get blood tests during 1997 and 1998, always putting them off. At the beginning of 1999 I finally got around to getting a blood test. The result was a very elevated ALT count. My doctor (Santiago Muñoz of the Albert Einstein Medical Center in Philadelphia) advised me to start the treatment. I panicked and got rather depressed for a few days. I decided to get another test done, since I have been told that even in healthy people the ALT can spike and then return to normal, that only a series of consistently high liver enzymes was cause for alarm.

The new blood test showed lower ALTs, but my doctor continued to advise me to start the treatment. Given that I was moving to St. Louis that summer, we decided that I would meet with my new doctor there and get his advice.

Once in St. Louis, after another blood test (mild elevation of ALTs) my new doctor (Adrian DiBisceglie of the Saint Louis Univercity Medical Center) advised that I get another liver biopsy. The (sound) reasoning was that blood tests are an inexact measurement of how the liver is really doing; a biopsy is the only way to see what damage has been done and how inflamed the liver really is. Additionally, since I had only had the 1 biopsy previously, getting a second biopsy would give us a good indication of how the disease had progressed over the past 6 years, and give us an indication of how it would progress over time. I agreed to get another biopsy.

In January of 2000 I got my new biopsy. Given my previous experience (and a newfound fear of needles from a very bad experience with blood drawing back in 1996) I asked for drugs. My doctor agreed and decided that I would get Versed [pronounced ver-SED]. One of the side-effects of it is that sometimes people don't remember things that occurred to them for several hours afterwards. That sounded like fun--I would not have been sad to forget another biopsy.

This biopsy was better than the last, I think primarily because of the Versed. If you have to get a liver biopsy and are worried about it, I recommend asking your doctor about Versed. The downside was that it took the nurse a very long time to find a vein to put the IV in. She finally used a small one on the outer part of my elbow joint, and no drugs were administered through the IV for more than 10 minutes while I waited for the doctor. My arm hurt quite a bit before they got to the part where I got the feel-good drugs, and I'm still cranky about that. When the Versed was first administered I must have smiled or something because the nurse kind of chuckled and said something like "he seems to like that". I was smiling because the ceiling tiles were receding and undulating in a quite interesting manner, and I was amused that I was so affected.

The novacaine in the ribs didn't hurt so much as the first biopsy, and I still did feel the big needle go in. (It actually felt like the needle pushed into organs all the way across my chest...crazy Versed.)

Liver biopsies now have a standardized rating system. Two measurements are made. The first is fibrosis, the amount of scarring, showing past damage to the liver. The second is the inflammation of the liver, showing its current activity level. Both are measured on a scale from 0 (no damage) to 4 (very bad news).

Unfortunately my previous biopsy was done before this standard rating was put in place, so it was not possible to look at the results sheet from the first to compare it to the second. Because in my mind the whole reason for this second biopsy was in order to compare it to the first, I was a little bit upset that my doctor did not think of this and have the information available. Instead I had to wait another month+ while they tracked down my previous biopsy slide to get the analyst to be able to look at them side by side.

For the results of this biopsy and the comparison, continue on to the 2000-Mar-14 update...

10:54PM ET
Once you are in remission and are virus free, can you ever get it again?
net.mind details contact résumé other