Peggy Lee was talking about sex. I’m not. It’s finally time to talk about the elephant in the room: my hepatitis.
OOOH. OH. Dirty. Hepatitis. Don’t you get that from using needle drugs? Or from having sex with someone who has AIDS? Or from being promiscuous?
Yes, you can get hepatitis that way. I DIDN’T. Why is it of all the diseases, a liver disease has the same stigma as a venereal disease? Oh gee, showing my age, that’s what we used to call sexually transmitted diseases. Liver disease has the stigma that you took unnecessary risks or behaved promiscuously. I’m not admitting to any of that because it’s not pertinent. Hepatitis is a virus; it can be caught by anyone, and in several ways beyond sharing needles or blood or sexual secretions. As a hidden disease why should it be stigmatized and not fibromyalgia (malingers) or chronic fatigue syndrome (same)? I don’t really believe people who suffer fibromyalgia and chronic fatigue syndrome – diseases we don’t understand yet – are malingers, but that is how they are treated by doctors and employers, same as hepatitis.
At a party, I shared a bottle of wine with a group of people as 19-year-olds are wont to do. We passed the bottle of cheap wine around from person to person, every pair of lips wrapped around the mouth of the bottle, every backwash shared with the next imbiber. The bottle journeyed around the circle several times before it was dead. I didn’t know the girl who brought the bottle and took the first drink, but her maniacal laughter when the bottle was finished was disconcerting to say the least.
Then the pronouncement: “I just gave you all hepatitis.” What? Why did she want to do that? She must have been mad at the world for having the disease herself, but why hurt other people? She gave me fever without the pleasures of sex. For life. Liver viruses are a lifetime sentence, not like cold or flu viruses which play through and are done, raising your immunity against getting that same virus.
She didn’t look sick, but why would she even know the word if she didn’t know what she was talking about? She was sick alright; hepatitis carriers don’t often look sick unless they are in the jaundiced stage or later toward the end of the disease, nearer death.
Within a week I was sick. I felt like I had a really bad case of the flu. I felt awful. My mother (I was still living at home and I’m not ashamed of it) made me see the family doctor who’d delivered me and was still my doctor. I made the appointment and went in. He examined me and said I probably had the flu. I told him the story; he fluffed it off, did not require a blood test for an easy proof, and sent me home to bed.
Three days later my skin and eyes were the weirdest brightest shade of yellow you’ve ever seen. My mother made me call the doctor and tell him I now had proof of my own diagnosis, as the jaundice had arrived in full force, and ask what I needed to do to get myself well and prevent my family from getting ill. This was the beginning of my questioning of doctors and their knowledge and advice.
The family was offered very expensive gamma globulin shots, basically like a vaccine made from the virus that sickens you, risking infection just from the vaccine. Health insurance didn’t exist back then (yes, I’m that old) so expensive preventative medical treatment was out of the question. Plan B was grandma’s method. Quarantine and bleach.
My parents freaked out. Because I was living in their home, they isolated me in one room. I was given a bucket with a set of plastic gloves and special dishes, and had to wash them myself when no other family members were around, so they wouldn’t even touch my dishes. I had to sterilize the dishes, and the kitchen when I was through with the dishes. I had to sterilize the bathroom after every use. It wasn’t fun, but at least I had a kind of support and a small routine I could manage for my self-care. I also wasn’t bored; I was busy cleaning up after myself. Mom would cook for me, things that were easier to digest, and made sure I had clean bedding so I could change my bedding as often as I needed, though I had to strip the sheets, put them in the washer, and then sterilize the washer. End result: none of the five family members I lived in close contact with got the hepatitis virus, including my sister who got stuck sharing the room I was isolated in.
Jaundice is a spill-over of bile into the blood and capillaries, which is what makes you yellow. As the bile dissipates the skin works very hard at restoring the proper balances of the body and in doing so you begin to itch. You itch all the time. The itching is horrible. Intense. I would be very careful not to scratch during the day only to find great red welts on my thighs and stomach and back where I had scratched during my sleep.
This is not a fun disease, hepatitis. The liver is inflamed from a virus, which causes irreversible damage. Then the virus can lie dormant for years only manifest at a later age, and like all good Murphy’s Law events, at the worst possible time. The liver is no longer able to process alcohol, or digest deep fried or greasy foods, or handle large amounts of refined carbohydrates. If you refrain and change habits you might never have more problems. Maybe. Depends on the individual. Depends on what habits you change. Depends on how your body handles its own chemistry.
I come from a lineage of alcoholics, on both sides of my family, so I’m genetically pre-disposed to alcoholism. Recalling my use in high school and early twenties, and my desire to this day, I’d guess I’m probably an alcoholic. When I drink I don’t stop. I never drank every day, but then by the time I was 19 and had had my first episode, the alcohol was making me sick when I drank it. Trade off: alcoholism or hepatitis. Not even a fair trade. Either one is bad.
First thing the medical community recommends for liver disease is to discontinue alcohol use. I struggled with that. Being legal, cheap, and easy to obtain, it was my current drug of choice. By not stopping I had two more active, lengthy bouts of hepatitis within eighteen months. I had to change my habits. Thus began my journey into nutritional research, with small improvements along the way as I learned more about biology, nutrition, exercise, and how it all works together, seeking my own wellness.
Two years ago I had another active episode of the virus. Hepatitis is exacerbated by stress, both physical and emotional, as are all hormone related diseases (the liver is responsible for many hormonal activities in the body). I won’t go into the stress I think brought on the inflammation, suffice it to say I didn’t deal well. My body reacted. Body said, no more, girl, you can’t take no more.
I’d gone in to the clinic for a urinary tract infection, my doctor said it was time for an annual examination, and required a blood test at the annual. A few days later, my medical consultant called with the upsetting (to her) news I had active hepatitis. I said, hwell, that explains why lotion isn’t solving the itching. Again she was surprised. When I fill out forms for new doctors I always mark hepatitis and liver disease as one of my issues. I reminded her my early experience with hepatitis should be in my record though none of the doctors at the clinic ever asked me about it or recorded it to my knowledge. This doctor wanted me to see a specialist.
The specialist told me I could not get hepatitis in the method I described, though when I’d had the original bout of hepatitis, I’m sure he wasn’t even alive yet. My baby doctor when I had my first bout at 19 did not believe how I got the disease. The specialist 38 years later did not believe me either. So – what? I would lie? They think there’s only one way to get the disease, and of course that’s how I got it and I’m so embarrassed I’m willing to lie? Why don’t you just tell me I don’t exist? If there is only one way to get hepatitis why do they close down entire restaurants when hepatitis is found in an employee? Most people don’t have sex at restaurants. People don’t share blood at restaurants unless the cook cuts himself and touches the food. But people do fail to wash their hands after using the restroom despite postings, food handler’s rules, and common courtesy hygiene. Customers also share things at restaurants like restrooms, tables, salad bars, and drink stations. It only takes one cough or unwashed hand to pass along a hepatitis virus.
I told the specialist I had bouts I thought were active inflammations and what I call “puny days”. He said people don’t have “flare-ups” though I was telling him what I was experiencing. Every symptom I described he said to see my “primary” for relief. He made me feel as if my experience did not exist and not just my complaints but I was therefore invalid.
His office failed to call me with the hematology report for six months, so for six months I went along thinking they didn’t have the results back. Silly me, then I realized they had not called. I called them finally and asked if my results had come back. They [pretended] to kind of freak that they hadn’t called for six months and insisted I had to see the doctor again to discuss the results.
At both visits, he never touched me for a physical examination, but went only by the report from the hematologist and the radiologist who did the ultrasound. He thought I had chronic hepatitis, meaning I’d had it for a long time and I’d have it forever without treatment. He offered me a course of treatment lasting six months to two years, with pharmaceutical medicines related to chemotherapy – you’d feel as sick as any cancer treatment patient – and with maybe a fifty to eighty percent chance of virus removal rate. At the affordable price of hundreds of thousands of dollars which had to be pre-approved by insurance before they’d start treatment. Well, and not really offered; he sneered while he said the treatment had to be pre-approved by insurance, making the value judgment I would not be able to pay the balance.
Though he’s probably right about that, what gives anybody the right to deny medical treatment based on ability to pay? Or to make a value judgement based on appearance? That, unfortunately, is how our medical/health care system works. If I read the news right, the medical/health care system isn’t going to be improving anytime soon. Unless you are the president or a member of congress or can afford your own health care without resorting to “insurance”. Realize I think insurance is an oxymoron here; you pay for it to insure your health care and then it is not necessarily provided. Oh, wait, that’s also called theft when you pay for something you are not getting.
So let’s see. Up to two years, sicker than now, maybe fifty percent recovery, very expensive, and I’m sure my insurance wouldn’t cover everything? Sure, I’m wanting that. Then he encouraged me to wait a year or two as there were some experimental drugs in the works thought to work best on patients who had never had treatment before. Yes, I want to try something experimental, be somebody’s guinea pig. Since it’s an experimental drug do they even have any idea what percentage of recovery I might have?
Then there is the ever ubiquitous liver transplant. After you become deathly ill, you wait on a list for a match to place SOMEBODY ELSE’S liver in your body with completely invasive transplant surgery. Then you take anti-rejection drugs and pay for them the rest of your life. With no guarantees, if the virus has not been eliminated from your body.
Then. It’s only a percentage. I will never be 100 per cent free of the virus. The progression of the illness includes cirrhosis and liver cancer. There is no way to know when or how fast or even if those progressions will happen to you. Depending. On your habits. On how you manage stress. On what you eat. On how much exercise you take. On how well you sleep.
I have not had intervention treatment to date. As Dr Me, I treat myself. I have to because the disease is pervasive and I have find relief. It’s like having a mild case of the flu 24/7/365. I have constant nausea, fevers, gastrointestinal distress, edemas, swollen lymph nodes, fatigue, constant pain, and the awful itching. Then there’s the ache on the right side of your body, inside, under the rib cage like a stitch in your side from a good hard run, only duller and constant, not sharp and quick and over like the stitch. Daily. All of which my primary looks for any other excuse than the virus I’ve carried in my body for 40 years. And why? To sell me more drugs which I refuse to take? If you don’t take what they recommend you can be called non-compliant and denied health care. WHAT?!?
I have habits now, certain addictions, I like to think. I take regular exercise every day 30 minutes or more. I prefer walking outside in the fresh air and swimming. I drink water to flush the bile from the skin to relieve the itch, and eat lightly to help with the gastrointestinal distress. I eat on the same schedule and sleep on the same schedule as often as possible. I eat fresh, local, organic, natural, whole foods whenever possible. I restrict my intake of processed carbohydrates and limit natural carbohydrates. I take naps and do not feel guilty about them because I sleep poorly at night. I wear ugly granny style support hose and supportive flat shoes to help the edemas. I pace myself at work and at home, hardly ever getting done all the things I’d like to get done.
Then a flare-up will hit. But wait. According to a “specialist” flare-ups do not exist. The all-hours fever, and non-digesting, and diarrhea/constipation, and night sweats, and fatigue, and swollen painful lymph nodes, and itching are all in my mind, or get this: “menopause”. Blame it on the female anatomy when all else fails. Yes, I am a dry cow now, and proud to have made it this far. Dr Me has to recommend rest and naps to restore the disturbed sleep from the fevers and night sweats, clear broths and poached eggs to help the digestion. If this happens two or three times a year at what point are you disabled and not able to participate in the work world?
I’ll always have the fever. Cause she touched me. Fever. In the morning. Fever all through the night.