Thursday, March 22, 2012

Life's Journey: Mono and Hep B

Some days the path gets a bit complicated. Take out your stew pot.

So a couple of weeks ago, I mentioned to the Clinical Doctor where I work that I'm sick and tired of being sick and tired. I whined about fatigue levels and asked if I could possibly have Chronic Fatigue Syndrome as result of having Mono and Hepatitis when I was 16. The Dr kindly informed me that having mono 34 years ago would have no bearing on my current health. However, Hepatitis B in an entirely different thing.

Put that thought on the back burner.

You may recall from prior posts that my mother is schizophrenic. Part of her illness was to deny my existence whenever possibe. So trips to the dentist, to the doctor, or other health care needs went right out the window. When I was a junior in high school, just before Christmas and not long after being sexually assaulted by a 24 year-old-ex-con, I became ill. I went from getting up at 5 to go jogging in the mornings to dragging myself out of bed, to vomiting, diarrhea, fever, chills and jaundice. After missing two weeks of school, my mother had to take me to the doctor, at my father's instance, just so I would be allowed to go back to school.

I remember sitting in the waiting room, running for a bathroom to vomit repeatedly, the sound of the nurse at the door inviting me to lie on an examining table. I remember not being able to sit up, or stop throwing up. I remember the sound of Dr Johnson's voice as he said, "Mary Lou, had you waited another 48 hours she would be dead."

I was diagnosed with mononucleosis, Hepatitis B and a staph throat infection. What we know now, but didn't know then, is that, according to, "One of the complications of infectious mononucleosis is hepatitis. However, this mono complication does not always result from mononucleosis. While hepatitis linked to mono is generally mild, it can pose health risks and in some cases can be quite serious."

This site goes on to say: "Hepatitis occurs in up to 90% of patients with infectious mononucleosis. Mono causes inflammation of the liver in approximately 1 out of every 10 people. Mono-related hepatitis is caused by the Epstein-Barr Virus which also causes mono. However, mono-related hepatitis is generally mild and only in rare cases does serious liver damage occur. When hepatitis is severe in individuals with mono, diagnosis should investigate a cause beyond mononucleosis. In rare instances where chronic hepatitis occurs because of infectious mononucleosis, it cannot be spread to an individual's spouse or offspring." Unfortunately, I was diagnosed in 1980, before anyone knew these things.

I don't remember going to the hospital, the exams or the tests. I do remember being isolated while we waited for test results. I didn't understand then that I had to be isolated until they knew if I had Hep A or Hep B. I was so relieved when they announced I had Hep B and was not contagious. It was 1982. The things they didn't know then about hepatitis.

The part that almost killed me? I came close to rupturing my spleen: "Splenomegaly is common. The spleen is often palpable 2-3 cm below the left costal margin and may be tender. The spleen rapidly enlarges over the first week of symptoms, usually decreasing in size over the next 7-10 days. The spleen can rupture from relatively minor trauma or even spontaneously" (MedScape).

I remember being alone with neither parent present at any time during the four days I was kept in the hospital. The doctor had said that my spleen nearly ruptured and I would have died. Dad says he came to the hospital several times. Mom did not. She was late to pick me up when they dismissed me, and I remember waiting in my room anxious that she had forgotten me again. I remember the spots on my chest and the nurse saying it must have been a reaction to the penicillin, but no one did anything about it. They couldn't give me anything to stop my itching because I had been discharged.

Now we know that: "Treatment with amoxicillin or ampicillin is associated with rash in approximately 80% of patients. This is often encountered when primary Epstein-Barr virus (EBV) infection is initially misdiagnosed as strep throat and is treated as such" (MedScape). I remember being tested for strep and finally they said I had a staph throat infection. I was treated with amoxicillin, which resulted in the rash.

When I left the hospital, I still evidenced jaundice. Took weeks to go away. I was the exception to what the then current medical wisdom indicated. Now we know that: "EBV is a rare causative agent of acute hepatitis, during the course of infectious mononucleosis. Usually, it is mild, undetected clinically and resolves spontaneously. Jaundice is distinctly uncommon; cholestatic hepatitis due to EBV infection is rarely reported" (Infectious Mononucleosis Hepatitis in Young Adults: Two Case Reports)

I spent most of the next six months in bed. I dropped out of school and slept 23 hours a day for about 6 weeks. I slept up twelve hours a day or more for months afterward. Slowly, slowly I stayed awake more. But I never felt "normal" again.

Put that thought on the back burner.

For most of my life my new normal has been 9 hours of sleep a night, and tempering my schedule with days I don't have to "push the go button" so I can survive the ones I do. I have never been able to maintain a very active social life because I gave all my energy to work or school. I gave up custody of my sons many years ago. Looking back, I must have intuitively known I could not keep up physically more than the two days a week I bartered for (of course there were other circumstances for another blog another time). Early menopause has helped because I seem to require less sleep than I used to.

Research states: "A number of recent studies have shown that people with chronic HCV infection
score poorly on many quality-of-life parameters, including a range of physical and psychological measures of wellbeing. Again, these impairments are relatively non-specific, and include reductions in
general health perception, mental health, physical function, social function and vitality. These measures
may also be impaired in many people with chronic hepatitis B. ( Yeah. That covers the dysthymia, missed concerts and movies, lack of energy, and fantasies of sleep.

I have good years, and not so good years. The good years coincided with my return to grad school. I'm having a not so good year now, and when I leave work, I have to go a rape crisis shelter to do therapy three days a week. When I get home I fall over. Every day. When the weekend comes, I don't want to go to friends', or run errands or even leave the house. I want to stop. Hence the Monday I finally asked our clinical doctor if I could have chronic fatigue syndrome. His answer, "I don't believe in Chronic Fatigue Syndrome, nor does mono have long term effects. However, Hepatitis B does," shocked me.

Put that thought on the back burner.

I work at a substance abuse clinic where IV drug use was common and many, many clients have hepatitis. Every year we have trainings at work which include Hep B. But I thought Hep B was something you got once and got over. I was wrong. "Almost all newborns and about 50% of children who become infected with hepatitis B develop chronic hepatitis. Less than 5% of adults who are infected with the hepatitis B virus develop the chronic condition" ( Lovely.

It gets worse. According to the CDC: "1.25 million people living in the United States have chronic hepatitis B. Not all people who are infected with HBV look or feel sick; they can have the virus and not have symptoms or know they are sick. If you have chronic hepatitis B you are more likely to get cirrhosis (scarring) and liver cancer. Each year, about 5,000 people die of cirrhosis or liver disease caused by HB."

Put that thought on the back burner.

The clinic doctor said to me that since we know I had Hep B, there was no sense in testing for it again at this time as testing can be expensive and he cannot prescribe treatment. However, he did want me to have a liver panel that determined if I currently have damage to my organs. The good news is that the panel came back normal or nearly so.

Put that thought on the back burner.

According to, "Most individuals with chronic hepatitis B remain symptom free for many years or decades. During this time, the patient's blood tests usually are normal or only mildly abnormal. Some patients may deteriorate and develop inflammation or symptoms, putting them at risk for developing cirrhosis." Small comfort since I have already lived with Hep B for 34 years.

Let's complicate things....

Symptoms of chronic Hep B:
Anxiety, Arthritis, Blurred Vision, Chills, Dark Urine, Decline in sex drive, Depression, Dizziness, Dry Skin, Excessive Bleeding, Excessive gas, Fatigue, Fever, Flu like symptoms, Gallstones, pain or discomfort in liver area, Hot flashes, Indigestion, Inflammation in the joints, Insomnia, Itching, Jaundice (yellowing of eyes and/or skin), Memory loss, mental confusion, Muscle aches, Nausea, Rashes/Red spots, Red palms, Sensitivity to heat or cold, Slow healing and recovery, Succeptibility to illness/flu, Water retention, Weakness. (

OK, board the TMI Bus. It's my blog and I need to talk. Don't like it, skip this part.

I don't have all these symptoms, but I do have over half. Another symptom, not on this list but found elsewhere, is spider veins. In the last month they have become noticeably worse, especially on my face and chest. It has gotten so bad that I stated wearing makeup every day after clients asked repeatedly if I was okay or did I have wind burn or something. And yesterday I had to leave work and go home and change clothes after unexpected diarrhea, something I've had periodically my whole life. It's not something that people talk about, so it never crossed my mind that it's not normal until my partner pointed it out and the doctor confirmed.

Nope, haven't done a viral load. Still have to pay Scrooge for the tests we did to verify I don't have advanced liver damage. Fortunately, Scrooge let me have the tests at the clinic's cost. And doing a viral load makes no sense to me if I'm powerless to seek treatment, at least for now.

Putting it all together...
I don't know. I really just don't know. I'm finding myself reevaluating so many things about my body.

Research states: "The major feature of the symptomatology of early or slowly progressive liver disease in chronic viral hepatitis is its highly variable nature. For many people,this stage of liver disease, which may be the only stage they experience, is completely asymptomatic.
On the other hand, many people have considerable symptoms despite the presence of mild liver disease or the absence of biochemical evidence of liver inflammation (normal alanine aminotransferase [ALT] and asparate aminotransferase [AST] levels). In fact, in chronic hepatitis C there is little correlation between the ALT level and presence of symptoms. Furthermore, the stage of liver disease (prior to liver failure) and the viral load in chronic hepatitis C have a poor association with the extent of symptoms."

My liver tests are good. My quality of life, not so much.

"In chronic hepatitis B, particularly in the case of perinatal or early childhood infection, a prolonged asymptomatic period (immune tolerance phase) is followed by a more symptomatic period (reactivationclearance phase) in which flares of clinical hepatitis may occur as the body's immune system attempts to clear infection. These flares are generally milder than an acute hepatitis B clinical presentation, however, they often consist of similar symptoms and signs. These include lethargy, nausea, anorexia, food intolerance, abdominal discomfort and jaundice." (

My first flare actually occurred after I contracted Hep B. My senior year, many symptoms returned of my previous illness. I tried to drag myself to school. I only lacked a semester of senior English from graduating. The doctor didn't know what to do with me. Dr Johnson told me that mono doesn't come back. Research in 1983 hadn't yet begun suggesting that Hep B did. I have always wondered if I was just making it up, defeated at the idea of attending classes with peers my mother failed or tortured in seventh grade math. Now I know it was a flare from the Hep B. Self-forgiveness for a GED in a blessing, even if it comes late.

Putting it all together and stirring the pot...

I don't know where I am going with this post. Or my life. I feel as if someone just handed me the Rosetta Stone and everything and nothing makes sense. By the way, "food intolerance" for this compulsive overeater means chronic diarrhea. Sucks. Today, yesterday, have been those kinds of days. So while I may have excellent liver panels, there are yet symptoms. And as the spiral of time has wrapped back to this childhood illness yet again, I find myself evaluating with new wisdom, insight, self-forgiveness. And fear. I live in a home with twenty-five cats, one dog, and one much beloved partner in desperate need of a hip replacement. I am the source of income. I can't stop. Perhaps that is a good things because I also cannot give up.

I even worry about Cameron reading the last paragraph and feeling guilt, which he does not deserve. Indeed, it is my beloved partner that keeps me going, reminds me of my life purpose and calling, bolsters my courage and fills my life with love. So tomorrow I will be able to get up and go at 3:30 in the morning yet one more day.