Hepatitis C,  Spines & Livers & Bones, Oh My!

My Special Club

The Tiny Kingdom has tons of clubs you can belong to, but in general, I’m not much of a joiner. I declined invitations to the Junior League and the Twins Club. The idea of the latter was especially perplexing to me. I could see a club for Moms With Well-Behaved Children Who Baby Sit Each Other, or perhaps the Moms With One Extremely Still and Quiet Child Who Requires Virtually No Care and Feeding at All, but even when I had only one child I could see that it would be impossible for a mother of newborn twins and a two year old to get to the bathroom, much less a meeting outside the house.

I don’t sew or smock, so I’ve never been invited to join the club where mothers hand make outfits for their children and then put on a fashion show to raise money for the arts. After I heard a rumor that one mom knit matching bikinis for herself and her daughter and pranced down the runway in the ensemble, I came close to asking someone to sponsor me for membership. I would have paid big bucks to see such bravery.

But I do belong to one special club. No one had to write me a recommendation or bring a bottle of wine to a meeting and then stand up and tell everyone I was a “cute girl” from a “good family” with “an impeccable reputation” who would “be a valuable addition” to the organization. In fact, membership in this club is involuntary.

Here are some of the more well-known members:

allen phil Ken_Kesey glamoreshot evel
naomi dusty pam mickey jack david larry tyler

It’s a varied lot, yes? Musicians, sports figures, actors, writers… I’ll give you a minute to identify them and decide what we have in common.

Left to right: Allen Ginsberg, Phil Lesh, Ken Kesey, Anne Glamore, Evel Knievel, Naomi Judd, Dusty Hill, Pamela Anderson, Mickey Mantle, Jack Kevorkian, David Crosby, Larry Hagman, Steven Tyler

What unites us? Here’s the story.


In the spring of 1997, Finn was a little over a year old and I was practicing law full time. I started losing weight and my head felt buzzy. I got dizzy when I stood up, and I slept whenever I could. Something was wrong, so I went to the doctor.

“You are a tired working mother,” was his diagnosis.

I’m sure that was partly true, but I knew that something else was going on so I sought a second opinion. This doctor performed some blood tests which revealed I had elevated liver enzymes. An ultrasound showed that all was well with my gallbladder, and my doctor advised me that she was ordering a test which she guessed would show that I had hepatitis.

I remember sitting in her office and looking at her blankly. Although I’d practiced medical malpractice defense law, I’d never had a case involving hepatitis, and I knew nothing at all about the disease.

Once I’d been definitely diagnosed with hepatitis C and scheduled for a liver biopsy, I learned a lot about the virus. It’s transmitted by contact with tainted blood. I’d received blood transfusions during my original surgery for scoliosis in 1980, before the blood supply was tested for hepatitis C (or HIV, for that matter).

My biopsy revealed that my liver had suffered some damage from unknowingly living with the disease for seventeen years. My physician advised me to finish having children before undergoing treatment for hepatitis, and Porter and Drew were born in August of 1998. (The disease is a slow one, so delaying treatment for a year or so wasn’t likely to affect my liver much given the amount of damage I had sustained thus far.)

When the twins were six months old, I started a year-long treatment. Three times a week, Bill and I would put all the boys into the bathtub where they’d be out of the way, and he’d give me a shot of interferon. I took ribavirin pills each day. I had thought having one kid and a law career was exhausting. Adding twins, a scary disease, shots and a feeling of general uncertainly about the future showed us what stress really is.

I suffered most of the side effects associated with the treatment and had to stop working for a while. At the end of a grueling year, I had a negative hepatitis C test, which still hangs on our bathroom wall as a reminder not to take good health for granted. Last October I celebrated my fifth year of remission from the disease. I wrote about it here and here. My mom heard the good news a couple of weeks before she died.

October 1 is World Hepatitis Awareness Day. I wanted you to know that anyone can have the disease, and the “silent epidemic” can be quietly destroying your liver while you feel perfectly fine. Most patients find out accidentally that they have the disease, when they are being treated for another problem, having an insurance test, or being screened to give blood. My story of seeking help for symptoms is the exception.

Each of the member of the club pictured above has or had the disease.

Please click HERE to see if you may be at risk.

As you can see, all of my children were at risk because I was HCV positive at the time I gave birth to them. I had them all tested last summer, which involved taking blood from trembling arms, sopping up tears, and large scoops of ice cream. It was a huge blessing to find out that they are all negative. I’ll just worry about buck teeth, scoliosis, acne, and other childhood traumas for them.

If you haven’t signed up to be an organ donor, please consider it. Lots of people could use your liver when you’re through with it. These days, you can even donate part of your liver while you’re still kicking, as doctors have had great success with living liver donation. (Your liver is as large as a football, and you have plenty to spare). I have a good friend whose nine year old son is doing great with a chunk of his uncle’s liver.

Plenty of other people have written eloquently on this topic. Here are some places to check out if you’re interested in learning more:

Penny Arcade’s Story

Phil Lesh’s HepC Site

Kelly Luker’s entertaining article from the point of view of a child of the sixties

Steven Tyler’s story

Naomi Judd’s HCV Site