In February 2001 I started taking Accutane, an oral medication for my adult acne. I’m 37 and have more zits on my face now then I did as a teenager! The medicine was great and it cleared up my acne. But after a month’s dosage and a blood test, my dermatologist noticed that my liver enzymes were above normal. She recommended that I stop the Accutane and follow up with my family doctor with a blood test to see what was up.
Ring. Ring. Ring…..I hit my speaker phone button on, "Hello?"
"Hi, Katie, it’s Dr. Robbins from Family Practice." She sounded so serious as she continued. "I’m sure coming to the hospital to hear this wouldn’t be any easier so I wanted to call you with your blood test results. You have Hepatitis C."
My stomach turned, "What does that mean?"
"You need to see a liver specialist. I recommend Dr. Bruce Bacon over at St. Louis University Hospital. Hepatitis, by basic definition, means an "inflammation" of the liver. There are different types and different ways you can contract them."
I started crying thinking to myself, "Haven’t I endured enough?? I survived an auto accident that left me paralyzed from the chest down. I’m living with one kidney. I endured a ten year battle against a major corporation and now THIS???"
My doctor’s sincere voice brought me back to reality and the problem at hand. "Katie, Hepatitis C can be a manageable disease. People live long full lives in spite of it. Go see Dr. Bacon and keep me posted."
The following Saturday, I attended rehearsal with the DisAbility Project. (www.disabilityproject.com). I shared my news with my fellow actors with and without disabilities and received warm and wonderful hugs. Then one of the troupe members said, "I have Hep C too." We started crying and the two of us agreed to meet for lunch later that week.
I went to see Dr. Bacon and his assistant Sarah. I found out that Dr. Bacon has worked with Naomi Judd, the country singer. Yep- she has Hep C too!
I asked Dr. Bacon, "How did this happen?"
"Well, Hepatitis C is passed blood to blood. Have you or do you use needles for injections of kind?" He asked in a gentle way.
"Hey doc, I partied in college but the only needles used in conjunction with this body have been through legal medical care."
"OK. Have you ever had a blood transfusion?"
"Yes, after my auto accident." I responded
"When was that?"
"February 11, 1990."
"That’s probably it then. Blood used in the US was not tested for hepatitis before 1992."
"Wow." My jaw dropped open. "So what you’re saying is; People, who have had any blood replacement prior to 1992, should be tested for Hepatitis C."
"Yes. Hepatitis C is going to be a national epidemic in the coming years."
"OK. What are my options?"
Dr. Bacon informed me that there was a new treatment using the traditional interferon that boosts the immune system in conjunction with a pill, Rebitol. This new combination has been shown to have fewer side effects, though he said I might experience a dry mouth, diminished appetite, insomnia, irritation on the tongue and the inside of mouth and hair loss.
I looked at him with eyes that wanted to cry. But I knew if I started crying then and there, I wouldn’t be able to stop. "Is the medicine worth it?" I managed to say.
"There is a fifty-fifty cure rate." He said with a smile on his face.
"Well, then let’s give it a try!"
In September, my husband, Steve and I went to a training class at the hospital, with about thirty other people who had Hep C and their family members. Steve needed to give me my shots. It was no big deal to him because he had given his dog, Katie insulin shots in the past. (I swear that’s the name of his dog that he had before he met me!) In November, I started the interferon shots once a week on Monday nights and 800 milligrams of rebitol a day. By the way, this medicine costs $2,000 a month. Someone is making a lot of money off of a lot of sick people.
The holidays came and I had such a sore mouth and throat that it hurt to swallow air. I had my Christmas dinner before me and all I could do was nibble. The food looked wonderful, but when I put it in my mouth it was hard to swallow.
The New Year came and I spent it in bed, hoping that I could beat this disease!
My appetite was almost gone, so I called Dr. Bacon’s nurse and she called in a script of medication that could stimulate my taste buds and get me eating again. After a 24 hour dosage, I awoke the next day with a small desire to eat, but was still very weak.
The next morning was a blur. I remember eating a bowl of cereal then lying back down. Then, I heard sirens and my bedroom was soon full of paramedics, policemen, and firemen. I was loaded onto a stretcher and taken to the St. Louis University hospital emergency room. I was extremely dehydrated and had a bladder infection.
I was put on IV fluids and admitted to the hospital. The next day, a staff doctor from Dr. Bacon’s office consulted with me because Dr. Bacon was out of town. I looked at him and said "Any medicine that puts me in the hospital is medicine I don’t want to take." He agreed.
I woke up the second day and was ready to be discharged. Hospitals are great for emergencies, but home is where I would get better! After a few weeks of recuperation, I met up with my thespian friend with Hep C. As it turns out, she tried the medicine too and her body rejected it as well. Oh well, misery loves company.
So what do I do now?
- Keep a positive attitude.
- Seek support. I’m pretty ticked off about all this. Thank God for my husband, therapist, family and friends.
- There are new drugs in the future that do not use interferon as a base. I’m game.
- I have a nutritionist. People with Hep C need a lot of protein! Their liver needs it.
- Acupuncture helps my immune system and balances my body’s energy.
- I take an eyedropper full of milk thistle each day. It’s said that it can help boost the liver enzymes and my doctor isn’t opposed to it, in fact many doctors in the office take it as well.
- I only use what medications/supplements are absolutely necessary. The fewer products I put into my body, the less my liver has to process.
- I don’t drink alcohol and try to pump up the water intake.
- I write and share my experiences with others.
I often think "Why do bad things happen? Why me?" There are many reasons, I’m sure. But while we are figuring our reasons don’t forget to:
Live, Love, and Laugh………..all though a good cry can do wonders!
Katie Rodriguez Banister works with audiences to embrace diversity
through motivational speaking and disability education.