Nearly six weeks since I updated this. I saw my general practitioner a couple of weeks ago and my gastro last week. I asked the GP about anti-depressants. His take (which agrees with mine) is not to start throwing drugs absent a specific reason. I would not describe myself as depressed now. We'll deal with side-effects as they come.

My wife accompanied me to the gastro. He's pretty conservative as well. I got a bit of hard news there. It looks like Genotype 4 is more like Genotype 1. I'm not sure whether it means a 48-week treatment series, but in any case, it's not the easier-to-treat Type 2 or 3. In any case, the gastro doc is saying 50% of patients respond. My wife was working on the assumption that this Interferon round will knock the thing out, like a round of antibiotics for a sinus infection. Unfortunately, it doesn't look like that's how it works. Easy to get discouraged with that.

I start treatment after the holidays. I have the prescriptions. Got a few bureaucratic hoops to jump through with the insurance, but I'll be on treatment by this time next month.

More medical stuff

Last week, the biopsy, this week the dreaded colonoscopy. This was totally unrelated to the hepatitis thing. I lost my dad to colon cancer last year and the doc wanted a look. Who am I to refuse? I was, thankfully, not present for the procedure.

I will spare you the details of the prep except to say that the best thing I did was not to put any flavoring in the brew they made me drink (let's just say that its effect was to provide the physician an unobstructed view). There were several little flavor packets (sort of like diet Kool-Aid) attached to the 4-liter jug. The pharmacist suggested I pick a flavor I wasn't too fond of since I would forever associate the flavor with the experience to come. I took it straight. It tasted like baking soda. If I'm to have a flavor forever ruined, that may as well be it.

Like the biopsy, the procedure itself was pretty simple for me. The drugs they gave me were pretty high-end. Demerol and something that whacked my short-term memory. I lay down and Doc warned me that I might feel the meds in the IV. I felt a warmth in my chest and the next thing I knew I was sitting in bed chatting, albeit groggily, with a nurse. Afterwards my wife and I were at breakfast and I realized that I could not remember getting there. Twelve hours later I'm still a bit foggy.

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Biopsy results

Just realized I hadn't posted my biopsy results here yet. I have "moderate" inflamation (scored 3 out of 4) and "mild" scarring (scored 2 out of 4) with no signs of cirrhosis. Not surprisingly, the doc recommends treatment.

I asked him about a timetable. He recommends I start within the year. He agreed with my analogy that this is more like a slow leak in the basement than a fire in the attic. I plan to start treatment after the holidays.

As chronic and potentially deadly conditions go, I guess this one isn't so bad. I'm facing inconvenience. I think of our friend with ovarian cancer. She has taken a bad turn. Once more I refocus on what is important. I'll take care of business and count my blessings.

Liver Log

After the Biopsy

As much as I dreaded the biopsy, it was really no big deal. The worst part was having to get an IV that didn't even get used. My wife found a lot of humor at my expense. I'm really not used to being the patient -- I'm pretty healthy outside of this issue. First I had to sit around a waiting room with non-stop cable news. The wait was nearly two hours which set things off on the wrong foot.

Once I went in, they told me to take off my shirt and put on a gown which opens at the back. I was wearing a pair of jean shorts (it's warm where I live) and left them on as well as my shoes.

(An aside, and I know I'll wonder about this again. What is really the point of the gown opening at the back when they're interested in my front?)

Anyway, I'm laying there with my shoes sticking out from under the gown and my wife walks in.

"Honey, don't you want your shoes off?"

"No!"

"You'll be more comfortable...."

"I'm fine!"

She takes off my shoes which makes my feet cold. Now I need a blanket. I was fine before. She figured I just wanted to make a quick getaway. Well, maybe that too.

I finally get wheeled in and make small talk with the crew. I make nervous jokes about fava beans and a nice chianti.

The doc shows up. Tall Jewish guy. Not too young, not too old. That's good in a specialist, especially one who's about to insert sharp instruments into a vital organ. Total medical geek. I work in technology and I recognize the geek type. It's all about the subject at hand, whether technology, or an organ. That's good too. He tells me what the plan is and I sign a release. I close my eyes and punch out. They offer some drugs to make me woozy. I decline. I really don't like woozy and I'm confident. This isn't too different from a root canal. It just tickles more. I hear a sound like a stapler. He does it again and it's done.

So now, I wait for results. I'm pretty sure it isn't going to show anything unusual. I'm not displaying any symptoms to speak of other than a number on a blood test report.

Next week I have a totally unrelated colonoscopy. That I'm dreading.

Liver Biopsy Tomorrow

Dreading this. Emotionally it's especially tough -- the last person I know who had a needle biopsy was my dad who had a tumor on his colon the size of a softball. He'd had a four inch section of his colon removed fifteen years before. They put it back together by sewing one piece inside the other. The tumor grew on the outside where it was reconnected. Happens in "only" two or three percent of cases. So yeh, I'm nervous. There could be something there more than the hep C. Something more than cirrhosis. It's unlikely, but it gives one pause. I haven't talked about that possibility with my wife. I guess that's why I have this.

Got a call from a friend from church. Her sister went through a year of Interferon when it was still new. She just wanted me to know that we were in their prayers.

Faith. I haven't mentioned much about faith here. Not everybody is built that way. Or, as an evangelical friend says, everbody is built that way, but that not everybody admits it.

Have to tuck the little one in.

SVR

This week

We celebrated my daughter's birthday this weekend with some friends in the hills north of us. This friend is an ovarian cancer survivor. It's been pretty scary for her. She went through a round of chemo last year. A marker came back elevated, but a CAT scan was normal. That ovarian test is notorious for false positives. Anyway, seeing her keeps things in perspective. Things could be much worse.

I had another "refocusing" experience today at church. There's a guy there who has been fighting this monster for the past several years (he has Genotype 1 and responded beautifully to a round of Interferon, but had it come back on him. Anyway he's telling me what a bad time he'd had with the infergen(?) on the second go-round and is now a candidate for a liver transplant.

It was apparent that my friend was kind of down as he was telling me about it when this guy came up pushing a walker. I'd never met him before -- he was kind of young, maybe 40. I introduced myself and soon learned that he was fighting non-Hodgkin's lymphoma and dumped a bunch of news about living in his car and having it broken into and so on. He asked where he could find something to drink and I directed him to the table where drinks were being served. Ken and I kind of looked at each other.

"Wow," he said. "I was starting to feel sorry for myself!"

Maybe things aren't so bad after all.

Other stuff

I'm scheduled for a liver biopsy next week. I can hardly wait. I think I was put on earth just so I could get all numb and have somebody stick a needle into my internal organs. Yeh, this is positive. I've been told that I had a sarcastic streak.

This doc continues to surprise me. He called me last Saturday with test results. He called me this afternoon (Sunday!) with an answer to a passing question I'd had about whether I should get a flu shot and that he'd mail me copies of my test results. I don't get this kind of service from a plumber! I've heard good independent reports of him. I think I'm beginning to see why.

More questions

First of all, thanks for the supportive comments. For what it's worth, I've changed my "nom de blog du jour" to LiverLogger. The Bledsoe bit is an inside joke that I won't go into here. Anyway, I'm Chris.

Moving on to my latest questions:

• Sex? My wife is kind of freaked out.
  I've read on the NIH site and elsewhere that there's nothing to worry about as long as you aren't drawing blood. Our tastes don't run in the direction of machines, whips, or biting. Personally, I think there's enough pain in life without developing fetishes around it, but other consenting adults are free to float their boats as they see fit.




• Do people treat you differently if they know about your condition?
  
  Anybody not let their kids come over to your house? Get suddenly distant? Morbid curiosity? Any awkward moments? Witty rejoinders? Good anecdotes are always welcome. I'm keeping this fairly private, as you can see, if only to avoid social awkwardness.

Questions

• I heard that one of the sides is bone density loss. A friend lost the crowns off his teeth. What can prevent that? Calcium supplements? Other dietary things?
  
  
• I doubt that I will feel like it, but will pushing myself to exercise help? Hurt? I'm thinking about a guy I knew in high school with mononucleosis who damaged his spleen(?) by forcing himself through a football workout.
  
  
• I've heard about the depression and about the idea of anti-depressants. Frankly, those drugs scare me too -- I've heard too many Prozac horror stories.
  

If you have an answer, post it. I'm putting these in my notebook that I take to the doc.

I clued the kids in today. My wife had already talked to our son. His attitude has been that of a 14-year-old lately. Understandable, being as how that's what he is. She basically said she expected him to step up. I had a few minutes with my older daughter (16). She knows what this stuff is -- a guy we go to church with has been fighting Type 1 for years. He's a potential candidate for transplant. Hopefully it won't come to that.

I told my younger daughter (11), unfortunately as I was tucking her in. Probably not the best time tactically, but it was when I was able. We do a little prayers-and-song thing that the other two have outgrown (she has too, but she likes it). Heck I was doing it with the other two -- yes, my son too -- when they were 12. Anyway, I prefaced it with both of them that I fully intend to be around for many years to come and then gave it to her in general terms. She cried a little but I stayed with her and let her know it's going to be okay. Sure hope I'm telling the truth.

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I just got back from a run. Took it easy. Ran a bit more than mile and then walked back. I'm really hopeful that I have enough reserve in the tank that the treatments won't put me down too badly. The gastro doc's office called today to set up the liver biopsy. Boy, I can hardly wait for that. I'm looking forward to it almost as much as I'm looking forward to my colonoscopy next month. That's totally unrelated and would be happening if I were 100%. I lost my dad to colon cancer last year and I'm overdue. Hopefully all the Grape-Nuts cereal and whole-wheat has paid off.

Test results

The gastro doc called me yesterday -- Saturday, to my surprise. My test results are in.

I have genotype 4. I'm told that genotype is more responsive to treatment.

My viral load is 3.9 million. I'd be interested in learning how they calculate that, but according to the doc, it's a moderate load.

My liver enzymes are ALT = 203 and AST = 76. That's higher than last month's and he recommends treatment.

In the best case, I'm looking at a six-month case of flu. Hopefully that will be the extent of it. My wife continues to swear that I don't look good, I continue to swear that I feel fine, I just don't sleep enough (bad habit of staying up too late staring at a computer and writing stuff....). I ran a couple of miles on Friday. Actually cut it short because I felt sorry for my dog -- she's an Australian shepherd and I walk her off the leash at night. She is getting older and slowing down. Poor puppy was 100 yards behind me most of the way.

The big chore will be telling my kids. My wife already clued my son in. I had delayed letting them know because I didn't want the questions hanging over them. But now it's time. I at least have some answers. Not all -- I never will. Mortality is never a fun topic, but when it's your own or that of someone you love, well it's tougher.

I got the results of my ultrasound last Friday. "No acute changes." So my liver isn't crawling with tumors, cirrhotic, . At least not visible ones. Next week I see the gastro doc.

Lately I've been noticing the "If Hep C was attacking your face..." ads (http://www.hepcfight.com/). The link points to a Roche Laboratories site pushing Interferon. I love free enterprise. The site is typical of Big Pharma -- lots of recommendations to talk to your doc, oh, and don't forget to ask about our product. Obviously they think they have a pretty promising market. Looks like I may be helping to pay for those half- and full-page color ads in major market newspapers and magazines. Fortunately, I'm insured.

I started the week off with an ultrasound on Monday morning. Other than that, there's little to report. The results aren't back yet (it's Friday night/Saturday morning) so I go through the weekend with the same question mark hanging over my head that has been there for the past month. I have an appointment with a gastroenterologist in three weeks. Earliest I could get in. When the doctor's office called today I asked whether they'd be able to move my appointment up if there was a problem in the tests. They said yes, they'd do that.

The ultrasound was in a medical building that is less than a mile from my house. I walked to it and ran back. I feel fine. I'm a little tired, but I operate on five or six hours of sleep a night and abuse caffeine. That's to be expected. My wife has been saying I look tired for the past, oh, five years or so. She says it more often now. Nothing new. I have deep-set eyes and have always looked like I have circles under my eyes, even after nine hours of sleep.

What's driving me really crazy is the wondering what is a symptom. I'm aware of my abdomen. It rumbles. Is that my liver? I fart. Is that a symptom? I don't have any pain, but I'm uncomfortably aware of my right side. I've had a heat rash on my chest and a spot in the inside of my elbow since June or July. Heat rash isn't unusual -- I live in a hot place. But such things usually go away for me fairly quickly. This has been here for two months. Does that have something to do with this? I look at the color of my shit. It is brown. If it becomes light-colored, that's a bad sign.

This is how hypochondriacs are made.

I went to the natural food store the other day and bought a bottle of something called silymarin and started taking it. It's an extract of a plant called milk thistle. From what I've read it can't hurt. My wife didn't like the idea -- she wants me to wait until I see the doc -- doesn't want it to change any test results. I sort of thought that was the idea. Guess I could drink a couple of beers before my next test... Hey, if my liver is being damaged, and the test results reflect it, I'd just as soon take the pill. So I'm sneaking it. I'm such a rebel.

It's a clear gelatin capsule with what looks like ground weeds inside. It has a strange mustardy taste. Is it having an effect? Who knows? Except for the taste, it could be alfalfa for all I know. I feel vaguely light-headed after I take it. But, again I'm not sure. Everything's a symptom or a side-effect.

I'm going to be a wreck if I start really feeling something. Nevermind. I suspect that the appropriate word is when not if. And when that time comes, I will long for the days that I could walk a mile.

I have to beat this thing.

First Post -- What This Is All About

The fastest way to get me out of a room is to start talking about ailments and illness. That's why I launch this blog with some trepidation. It's all about my ailments and illness. Of course that's a much more interesting topic than somebody else's ailments. Bear with me. Read on or not as you choose. You've been warned.

Some ten years ago I donated blood at an office blood drive. A few weeks later I got a letter back from the blood bank. It said (in effect), "Thank you for donating, however we can't use your blood and we can't tell you why. Go see your doctor." Surprised and concerned, I made the necessary appointment. Within a week I learned that I had contracted Hepatitis C. I'm not certain of the source, but I have an idea (a topic for another blog entry).

Since that time I have more or less regularly had a blood test on an annual or semi-annual basis, depending on my doctor's views, and on how well I remembered. A few months ago, after a reminder of mortality (dad's death) I resolved to get my bloodwork back current and to have the usual "manly" exams for the middle years -- prostate, colonoscopy, and so on. That was four weeks ago. A couple of weeks ago I received a note from my doctor. Elevated liver enzymes (I need to look them up, but one was 76, the other 140 where normal is 40) and somewhat low white blood cell count (4.2). No alcohol, no Tylenol.

Another appointment. This was a new doctor to me. I told him that I didn't plan to sit back and watch while this thing killed me or even makes me miserable. Now understanding that this was a new development, I'm in the midst of a round of tests. This morning I had an abdominal ultrasound. In a couple of weeks I see a gastroenterologist. Somewhere along the line I'll probably have a CT scan, possibly with a liver biopsy.

Depending on the outcome of those tests, the most likely next action will be to start a round of Interferon along with some other drugs. Depending on the genotype of the bug, it will probably be either 24 weeks or 48 weeks. Or maybe it's something else.

Right now, I'm not sure what I'm facing. I may or may not be in for the fight of my life.

In the meanwhile, it's like the song says: "The waiting is the hardest part."