Continue with Support Groups.....even after treatment

Hi, BettyV.

I’m sorry this has taken so long. I still have trouble concentrating with too many things going on around me. We are in close quarters in this small R.V. with my husband watching news every minute and I have no place to go for quiet. Anyway, I will try to write something for you tonight.

December 12th 1984 I was involved in a car accident which caused extensive damage to both legs. For three days they didn’t know if I would live or not. I was in intensive care three months and in the hospital a total of four months, which would have been longer, had I not begged my doctors to let me go home. My hospital stay involved many surgeries and blood transfusions but I survived. My recovery included two years of surgeries on my legs and learning to walk again.

Once recovered, I would donate my blood occasionally to help others. I received a letter from the blood bank stating that I have the antibodies for hepatitis c and can no longer donate my blood. I phoned the blood bank and argued with the poor lady who answered the phone. It was my understanding that if you have the antibodies for something that you had it at one time but your body has cleared it. Therefore, you no longer have it, only the antibodies. The poor lady was frustrated and I was upset that I could no longer donate blood. I finally agreed to never donate blood again but did not see any reason why I should see a doctor.

My children grew up and left home. I landed a very good job at Federal Express and worked there six years before my husband’s plant was sold. He made the decision to try to stay with the same company and applied for a position in Wisconsin. We lived there almost three years before that plant was sold. We relocated to Augusta, Ga. where my husband worked across the river in S.C. It was during this ten year period in Georgia that I finally learned what hepatitis c is and how important it is to see a doctor.

My general practice doctor referred me to a gastroenterologist who ran the test and confirmed that I had hepatitis c. I had no symptoms except some mild fatigue and my liver had no damage so we determined to do nothing except watch my condition until it was determined that damage was being done. I went in for blood tests every six months and was confident that my dr. and I had made the correct decision.

My husband decided to retire and we made the decision to go back to TN., back to the house we had been renting out all this time and I was referred to another doctor for my hepatitis c by my new general practice doctor. I ordered my records to be forwarded to the new doctor and went for my first visit. I had been sitting in the examining room for the usual fifteen or twenty minutes when the doctor came in, slammed my file on the table and literally yelled, “I don’t understand why anyone would refuse treatment for hepatitis c.” My previous doctor had written a note in my file that I had refused treatment. I was livid. All the tests were done again and another liver biopsy was ordered. I still had no liver damage, my copies were low and I agreed to go into treatment.

At the time I began treatment, I still had no symptoms other than mild fatigue and I was determined that this treatment would not interfere in my daily life. I had joined an online support group and had heard all the horror stories. I went spastic with my first shot because I drew blood and thought I had hit a vein. Thank God for that support group. I probably would have gone to the emergency room. I was set for the chills and flue like symptoms that I had been warned about but my reaction was mild. Each week I was more fatigued. I eventually found myself in bed most of the time. The metallic taste in my mouth and loss of appetite started early in treatment and I found that simply walking across the floor wore me out. I scheduled my doctor appointments for after noon so that I would have time to get ready because each step in getting ready wore me out. My personality changed from a mild mannered understanding patient person to a short tempered person who didn’t want to be around anyone. I was a miserable person who hated herself. My treatment took over every aspect of me and my life. In spite of all this, my doctor was happy with my lab results each month and I cleared the virus in 12 weeks. But 48 weeks is a long time and continuing treatment became harder as time went on. My husband would always be there to nudge me on.
I can say that God was also there with me. I was bored with TV. Didn’t have any interest in reading or anything else. I don’t know how it came about, but I wrote a poem about fighting the dragon. Then, I wrote another one. The words came into my mind and I felt I had to write them down. I had written several poems about dragon fighting when I met another poet online. He was very kind and asked to read my poems when I became brave enough to tell him I had written any. I held my breath as I sent them to him and I thought he was just being kind when he told me he liked them and that I needed to share them with others. I decided to test them out on my husband first and was surprised at his reaction. My poetry, written during treatment was published in December 2008.

I completed treatment two years ago. Even though I had a rough time of it, my experience was mild compared to that of others. Close to the end of treatment I began to have aches in both of my elbows. Now I have tennis elbow in both elbows. I still have bouts with brain fog occasionally, my short term memory is gone and there are times that I’m too tired to do things. In short, sometimes I still feel like I’m in treatment. I think it’s important to continue the support groups even after treatment is finished and successful because we do not get back to normal after stopping the drugs. Not over night anyway.

Vicki's Story