HEPATITIS B - MY STORY

Fatigue, nausea, fatigue,abdominal pain, fatigue, vomiting, fatigue, decreased concentration level, fatigue, diarrhea, FATIGUE!  What was happening to me?  Why was I so darned tired?  Was it because I had been working at least two to three double shifts a week as an LPN on a medical surgical floor?  Was my gallbladder acting up? It's almost Christmas, I don't have time for this!

It started in the winter of 1981,the horrible fatigue, nausea, and right upper quadrant abdominal pain. I was only 26 years old, so I shouldn't be so tired.

Yes, I had a small child, was working full time and then some, and also taking a few classes toward my degree for an RN, but I was young and apparently heaalthy.  I had taken care of a severely jaundiced lady off and on for the past couple of months.  She had terminal cancer and it was just assumed it had spread to the liver.  This poor lady had tubes and devices everywhere that required cleaning and care.  In those days, medical precautions called "Universal Precautions" didn't exist.  Yes, I washed my hands, but that isn't always a stop gap , especially to Hepatitis.  Just let me get through Christmas dear Lord.

By January of 1982, I could only eat burnt toast, oatmeal, and drink water, then to the point of water only, and even that caused abdominl pain.  I finally gave in and went to a surgeon to have the stupid gallbladder removed (you see I had long ago diagnosed myself with gallbladder problems).  He admitted me to the hospital for surgery.  I woke up the first morning in isolation, meaning no one could come or go without gowning and gloving up.  What's going on? Surgery patients aren't isolated!  "Wait for the doctor" was the reply.  He finally arrives and tells me that I have "some kind of hepatitis" and not a gallbladder problem.  My blood work that is just done routinely for all surgical patients was "off the page".  Oh my God, what now? How? What about my son, my husband? What about my patients that I had recently cared for? Nobody knew for sure at that time.  My husband and son were immediately given immunoglobulin, which as it turns out, was totally useless, as I have type B hepatitis, and it is only effective for type A.

I remained in the hospital for about 10 days.  I was discharged home to rest for a couple of weeks, then sent back to work "light duty".  I was assigned to work in a nursing office responsible for various administrative and policy making type projects.  It required very long hours, as the hospital was preparing for an inspection, in the near future,  by the JCAHO, which is an accreditation body.  This accreditation is crucial for hospitals to receive government funding.  As I said, the hours were long and grueling, not your routine 40 hour a week sit at a desk type job.  Needless to say, I had a relapse and ended up back in the hospital for another week, home for a few weeks to rest and then back to the office job.

This lasted approiximately a month or two, and then a nursing supervisor decided I could go back to floor duty, and wear gloves to pass medications to my patients or do procedures for patients.Set back number two, down again with another relapse.

This time, my medical doctor stepped in and said NO WORK!  OK, fine with me cause I sure didn't feel like working ANYWHERE!  While I was off and home sick this time, things in our community had gone from bad to worse for the steel mill industry. My husbands plant had shut down the year before I was diagnosed, and he had been doing whatever work that he could find.  With me now on long term leave and an income of only 60% of my normal salary, we were rapidly sinking.  So, he went to Florida to find work, and two months later my son and I moved to Florida with him.  Meanwhile I am trying at home to recover, sell a house, pack to move, and raise a four year old.

After being in Florida for about three months, I decided that I felt well enough to find a job.  I found a job in a hospital medical records department and a wonderful lady who was willing to teach me a new career in coding medical records. I learned fast and loved it.  Things were going great.  The more I learned the hungrier for advancement that I became.  I moved on up to the point of heading my own department of Utiliztion Review and Coding. I LOVED IT!  Then I got pregnant.

"I think you should probably have an abortion", the gynecologist said.  Due to the risk to the fetuses, that's right, fetuses, twins!!!  An abortion???  I think not!  Off we go to an infectious disease specialist, thank God. He reassured both my doctor and me that the twins could receive injections for the Hepatitis, and should be just fine.  I found an excellent pediatrician, before the twins were born, who prepared everything in advance. When my C-Section was scheduled, the vaccine was made available. My boys were born with only mild neonatal jaundice and a day or two of low blood sugar levels.  They received their injections right after birth and then again two more times.

We had to "wait and see" if it was going to work.  Please Dear God, not these sweet babies too,pleaseeeeeeeee.............The day finally came to draw blood and see if the treatment had worked.  We all waited, not so patiently, for the results.  The doctor called and said everything was fine, the treatment had worked and the boys would be fine!!! HALLELUJAH!  Thank you Lord that these little guys don't have to go through this too!

Time went by swiftly, I was feeling great, the boys, all three, were doing great and growing like weeds. My husband had learned a new trade in air conditioniong and loved his work too.  When the twins were four years old, I started having those horrible symptoms again.  Oh no, I thought, not now, everything has been going great!  But yes, a flare-up again.  This time I stayed at home, in bed, and pampered myself as much as a mother of three could.

I felt much better after about two weeks and returned to work full time.  But, something else had happened.  Although I still loved my job and the work that I was doing, it was taking me away from home far too much.  The boys were now four and 11, where had the time gone?  How much quality time did I have left for them?  I went to work at 7 am and usually didn't get home until 6 or 7 pm, and was on call in the evening, on weekends, and holidays. I had really gotten to know and cherish those little guys while I was home for those two weeks; was this job worth risking my health and children for?  NOPE!

We couldn't afford to live in Florida if I wasn't working, so, after six years we decided to move back to Ohio near our families. The differences now were that we had both been retrained in different fields and could find jobs in the area.  I stayed home with the kids for about four months, then found a job auditing medical records, and eventually a job at my old hospital as a coder.  It was perfect, at first, I was doing something that I loved without the responsibilities of supervision,and working a normal schedule.

People went on vacation, had babies, got sick, quit, and the work load started to get heavier and heavier. New equipment to learn, new software to learn, new people to help train, new time constraints on work loads, the advent of "productivity levels", management changes, new supervisors, new directors, new vice presidents, every day, something new and STRESSFUL!  Still I plugged on trying to do the best that I could do, while getting more and more involved in community activities that the boys were in such as Little League Baseball and the Athletic Boosters, our church Youth Leader, Choir, Christmas programs, etc..Why was I always so darned tired?  I just could never seem to get enough rest.  Things at work were getting more and more frustrating every day.  I couldn't quit work, so I had to give up my involvement in community projects just so I could have a few hours to try to regroup and rest.

I gave up all involvement in everything outside of work and home.  But, the damage was already done.  Work became more unbearable, probably because I was feeling so bad physically.  The abdominl pain, nausea, and now back pain in the right upper quadrant of my back, and the ever present fatigue were growing much much worse.  I couldn't concentrate for very long, and God knows the work that I was doing required strict concentration, as the hospitals reimbursement depended on the accuracy of what I was doing!

I was very dissatisfied with my physician, he was nothing like the doctor that I had before moving to Florida, who incidentally, died at a young age of Lung Cancer while we were in Florida.  This guy was going no where fast!  He could care less if I was getting worse.  Loose weight, exercise, take a pill and come back in a month or so.  He rarely checked my liver enzymes and finally agreed to send me to a liver specialist after I drove him crazy about it!  The specialist drew his pints of blood for testing and told me that I failed for Interferon therapy.  What the hell did that mean?  Guess I just go off somewhere now and suffer until I die.  Maybe I'm just a nutcase??  I am so sick of fighting this!

I changed doctors!  Finally, someone who is at least compassionate and caring enough to at least check my enzymes.  Guess what?  They were way way up! Surprise surprise!  I could barely stay awake for more than a couple of hours in the morning without having a nap. I was having constant right upper quadrant abdominal and back pain, frequent nausea, can't concentrate for very long periods, depressed, fatigued beyond description, fat and miserable. "let's take you off work for a while and see what happens"..........(that was 4 years ago).

Still in pain, nauseated, fatigued, fat, depressed, and miserable, I was sent back to the liver specialist in May 1998.

This time a liver biopsy, again! Oh boy, my favorite past time, having a needle jabbed through my rib cage to pull out a little tiny piece of my liver!  He finally calls 6 days later with the results: I now have "Steatosis" or "Fatty Liver", the "fix" lose weight!  I'm trying I'm trying!  He says the pain is from the capsule of the liver stretching and losing weight will help. Makes sense I suppose.  But someone please tell me where to find the energy to exercise?Someone please tell me how to lower my cholesterol and triglycerides when I am already and have been for some time, following a low fat diet?  Someone please tell me when the fatigue and pain go away?  Someone please tell me that I'm not crazy!

Through researching different areas that I've found on the internet, I know that I'm not alone. I think our doctors have a lot yet to learn, when it comes to how and what their patients with Hepatitis are feeling and going through. Pain, fatigue, and nausea are very real.  I had these same symptoms prior to being overweight.  These same symptoms have most definitely worsened over time.  After all, I'm not 26 any more.  Am I a nut case?  Nah! Are my signs and symptoms real? YOU BETCHA! My liver enzymes remain elevated, my ultrasound shows an enlarged liver, my biopsy is "so so", guess I'm not quite so nuts after all! I am trying to keep a positive outlook.  Only I know exactly how I feel!!  I am taking charge here!

I have a kind and compassionate and intelligent primary care physician. I have a competent liver specialist. I fought, through an attorney, for social security and workman's compensation. WHAT A BATTLE THIS IS FOLKS!! AND I finally won my social security disability in March 1999. But, it was based on deperession, and NOT Hepatitis! Do I get depressed?  Sure do, but it's mostly from not being able to do things and enjoy life like I used to be able to do.

My approval in March for Social Security was dampened a great deal by a tremendous personal tragedy. My only sibling, my baby brother, age 40, passed away from Liver Cancer due to Hepatitis B. The irony here is that I've known for 18 years that I have this killer; my brother was only diagnosed in February 1999! A week after being told that he had Hepatitis B, he was diagnosed with Liver Cancer and Cirrhosis! We were told that nothing could be done, but could not accept that. I called all over the United States to find help for him, and finally found someone to take him at the excellent Starzle Liver Center at the University of Pittsburgh. He wasn't given much hope, but they at least attempted to help him. He had chemoembolization of one of the larger liver tumors on a Tuesday, came home on Wednesday, and passed away on Friday. He was diagnosed and passed away within 4 weeks; leaving so many things unsaid and undone. He left behind 2 young children in addition to his wife and my parents. Why did this happen to him? That's a question I will always be asking! He had no warning, and hadn't been sick for very long, only a couple of weeks, and thought he had the flu! I'm told that the pain of our loss will get easier to deal with over time, God I pray that it does!

I know that there are others out there who know what I'm going through, even if most of our physicians don't completely comprehend it.  I don't expect a miracle cure, but I do expect research to continue and a cure to be found some day. I also expect my physicians to respect me as a competent intelligent human being and not just a way to make a buck. Please search for the "right" Physician! After all only you yourself really know your body; don't be brushed off by an annoyed and overworked doctor. FIGHT BACK!!


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