Stigma

I was first told (1997) that I had Hepatitis C at a blood bank. When I returned to give blood again, the person at the desk gave me a scared look. I was sent to a small room with a doctor, who apparently assumed I was a drug user. He warned me not to give blood, which was fine, but also not to kiss, not to have sex, not to use the same dishes as others even though they were washed, at home or in a restaurant. All these warnings proved to be unwarranted, but at the time I emerged from the encounter feeling like Typhoid Mary. I was devastated and diminished.

As time has passed, public information on Hepatitis C always gives the main source of new cases as shared needles. The assumption is that the needles are shared by addicts. The only needles I've ever had were administered in medical offices, so if the needles are the source, it would have to be improperly sterilized needles or reused disposable needles. Reused needles are a source of polio and other diseases.
Medical personnel have acquired diseases from accidental needle sticks while doing their jobs.

For a long time it was believed not to be transmissable by sexual activity, since so many partners of people with Hep C did not have the virus. Now the list of possibilities does include sexual activity, especially if there have been many partners. Any breaks in the skin could allow blood from one partner to enter the bloodstream of another.

By this logic, boxing should be listed as a source of Hepatitis C infection. Don't sit in the front row!

Transfusions spread the virus freely before 1992, when tests were finally developed that could detect the virus. Since then, the public is often assured that the blood supply is now free of that virus. I received transfusions in the 1960's, long before awareness of this virus. It's probable, but not provable, that I was infected then.

Hepatitis C virus often lurks for 20 years before becoming aggressive and causing symptoms. That means inflammation of the liver due to pre-1992 transfusions could show up for years to come.

The public is told that most people with Hepatitis C don't know they have it. So why don't doctors/labs test for it?

Stigma attached to this illness may help people deny it could happen to them. Thus it tends to inhibit people from trying to find out.

Corn Starch and Cracked Ice

Coping with side effects gives people in treatment some feeling of control. Often it can make the difference in whether people can stand to continue treatment.

I've had a box of corn starch in my cupboard for seven years. Someone from a support group for people waiting for liver transplants mentioned that many experienced intolerable itching, to the point of scratching their arms bloody. Medical staff had no suggestions beyond using lotion, which didn't help. But a patient discovered that corn starch could soothe the itching, and spread the word.

Presumably, the itchiness was/is related to buildup of toxins because a damaged liver can't do its job thoroughly.

So, every time I get itchy, I worry about what it means. Still, I live in a climate that is usually semi-arid, which dries the skin. So far, lotion, or talcum powder, or anti-itch creams with cortisone, have been more than enough to handle the problem.

I've been reading and listening to varied accounts of side effects that individuals experienced during treatment with interferon and ribivarin. Some of them are familiar; fatigue, muscle pain, muscle weakness, low energy, depression, brain fog. I've been told many times by doctors that there is no way to tell whether hepatitis C is responsible for these symptoms. I also have diagnoses of chronic fatigue and fibromyalgia. Flu-like symptoms with fever and nausea are common side effects of treatment. Since I've had the flu many times, I have ways of coping: Ice cubes or cracked ice to suck, ice bags, lots of fluids, acetominophen (I now take Prilosec to counteract the eroding effect of over-the-counter pain medications), lots of rest.

At first I was appalled. I already experienced so many of these symptoms almost daily. Would they become twice as intense? Even so, it would be worth it in order to attempt to stop the virus from damaging me further.

On the other hand, I'm so accustomed to symptoms, I may well be able to handle them without thinking I'm going to die. Since my conditions have kept me unemployable for years, I have the luxury of time to manage rest and activity.

So, bring it on.

Good Day

After two days of resting a lot, today I've been able to do laundry, walk a few blocks, socialize a little, get some paperwork and other things done. I watched some more of the Olympics. I'm so accustomed to watching superb athletes, I don't know what I'll think of regular TV programs when it ends.

The kids are back from their honeymoon, and making plans that include visiting me. That's a great support. Guess what? I can't do this alone, and I don't have to.

Hep C Bloggers

Yesterday I was glad to find, through Google, several bloggers who share their courses of treatment for Hepatitis C. This was very encouraging for me. Several blog names were variations of Hep C Journey or Hep C Journal. More showed up in Links sections of the blogs. I've looked at two and sent comments. I'm reluctant to publish some things for all the world to see; still, the details I've read give me good information and a sense of not being alone. Other people have been there, too. If my story can offer that to others, it may be worth while to share it candidly.

Preparing to be a Battlefield

Preparing to be a battlefield for PEG-Intron and Ribivarin vs. the Hepatitis C virus, I tried to remember what was helpful or comforting when I've had a bad case of influenza.

I'll need lots of liquids.

Cracked ice and flat ginger ale are recommended.

Part of the time I may be too weak and/or miserable to go to the kitchen. I bought a sturdy bed tray with legs that can stay near me to give access to fluids, ice, tissues, medicine, a phone, the TV remote, a small radio with ear plugs, a small cooler for water, diluted juice, and ginger ale (I like Jamaica Ginger Beer; it has enough ginger to settle my stomach). I'll get some supplies before treatment starts, and ask for help when I run out of them.

If I'm strong enough to be hungry, I should be strong enough to get up and get myself something to eat. Simple foods in small amounts.

If I'm lucky, I may only be that weak or feverish one or two days a week.

Someone described the treatment as being hit by a Mack truck. I feel the Mack truck is hitting the virus. The worse I feel, the harder my immune system is fighting, right?

Uncertainty

This morning my coordination is poor, so I had a cold breakfast. This is not a good time to try to handle a glass carafe of boiling water.

Why is this happening? I don't know. Possibilities include toxicity from the inflamed liver, chronic fatigue, fibromyalgia, sugar hangover, poor sleep, protests of aging muscles and nerves. Any of these can slow the clearance of lactose and other products of muscle cells and other cells.

Countdown to Treatment

On September 16th I plan to start treatment with PEG-Intron (Interferon)and ribivarin at Kaiser Permanente. I'm scared and elated. People have reacted to these chemicals with flu-like symptoms, anywhere from mild to severe. Many endure this on the weekends, then go to work on Monday. The treatments last 48 weeks, with a weekly shot of interferon and daily tablet of ribivarin. Blood tests every two weeks will show whether the amount of virus is being reduced. If there isn't much effect by three months, the treatment will be stopped. Of those who complete the 48 weeks of treatment, 50% can be expected to be clear of virus and stay clear at least six months.

Several people have told me they took the same treatment and have been clear of the Hep C virus, one for four years, another for eight years. They've encouraged me to try.

It may not work, but I'll take the 50-50 odds gladly.