Dealing with Hepatitis C By Edna Merle
I have Hepatitis C. My genotype is 3 a. I was informed of this in prison. After diagnostics, where officials decide where you will spend your time, I was sent to Washington State Prison in Davisboro, Georgia. It is called Washington because that is the name of the county where the prison is located. When I’ve told people about that prison they think I was in Washington, D.C., and thus a career criminal. I am not.
Hep C, as it is referred to, is a disease that affects the liver and causes eventual scarring that can lead to cirrhosis and death if not stopped in time. In 1996 I was officially diagnosed and told what not to do: drink alcohol, take drugs, smoke cigarettes. But the worst thing the doc said was definitely not take Tylenol and other over-the-counter medicines. I did my research and discovered a few more bad things that can affect Hep C. The main one is sodium benzoate, a preservative in soft drinks and other foods. And salt. Yes, salt. Salt removes all the water around the cells of the liver causing them to dry up and die. The liver cells should be recovering and preparing for the next day of antagonists. The water keeps the cells moist and happy. Salt could be the worst antagonist of the Hep C virus because it is in almost everything we eat and drink. It’s very subtle and hides itself. Salt is sometimes even undetected by taste. Watch out for salt if you have Hep C.
While I was in prison I had two liver biopsies that determined my liver is as healthy as a baby’s. I was told “you won’t die from this disease. It’ll be something else that takes you out.” What will that be? I asked the doctor. She didn’t know what would be the cause of my demise. She simply said, “It won’t be hepatitis that kills you.” What a relief.
I am one of the lucky ones. In prison I knew a lady who had two life sentences without parole. She had been a prostitute. One of her customers was a guy who hired a taxi. They got in the back seat and the guy leaned over the seat and demanded all the driver’s money. The driver was foreign and new to this country. His English wasn’t too good. The driver didn’t have a chance when the guy in the back pulled out a screwdriver as thin as an ice pick and stabbed him in the back of his brain.
His fingerprints were on the weapon. He had the cash in his pocket. He was caught. Wanda was there so she was a co-conspirator. He got the death penalty. She got life times two, without parole.
Wanda had Hep C. She and I worked together and I liked her. She seemed genuine, a good girl. I had told her that I had Hep C and she told me that she’d had it since before she’d been locked up. She told me she had the disease for years. But when she started to become real sick with inflammation of her legs and abdomen, nausea and feeling exhausted all the time, she said it was too late for her because by the time the prison doctors admitted to her that she had Hep C, the disease was too far gone. When she asked them why they didn’t tell her in the beginning as soon as they knew, their reply was that since she had two life sentences without parole it was in the better interest of society that she not be treated. Nor would a liver transplant ever be permitted. So, she developed cirrhosis. Finally, Wanda couldn’t work anymore. I’d see her from time to time wandering around outside of her building. I’d take her arm and ask where she was going. She would say she was running to the store to get something for dinner or some cigarettes but she would be going in the wrong direction. It was plain that the ammonia, which had built up in her system because her liver wasn’t working any more, had gone to her brain. It can make you say wild things, even hallucinate. She started hemorrhaging and bled internally because her blood vessels were exploding; the blood would be thrown up or come out the other end. Her roommates were terrified of catching the disease and were grossed out by not only blood but other body fluids as well. No one that lived near wanted to touch Wanda to help or even comfort her, except one person. You’ll be surprised to discover that person was Big Bird. She offered to be Wanda’s roommate so she could take care of her. The prison officials agreed that Big Bird could live with Wanda. So she moved into Wanda’s room. And they say she really did do a wonderful job caring for her. Big Bird did everything for Wanda. She helped her bathe, clothed her and cleaned up all her bodily disturbances from the disease, kept their room inspection ready and so on. Amazing, that was the Big Bird I knew when I wanted her for my roommate. But then that was before Big Bird quit taking her own medication.
Wanda let me know who to contact for help with Hep C in prison. I am grateful for her advice because I could have ended up like her.
Wanda knew she was dying and told me about a visit she’d had from an angel. One night it appeared on the wall of her room. Her roommates were surprised when they found Wanda smiling as if she were in perfect health. She seemed to be talking with someone, although no one was there. Wanda came to church and told this story. We were amazed because prior to this Wanda had been out of her mind with the toxins in her brain. Then, after her vision, she suddenly became lucid just like the old Wanda we all knew and loved. We thought she was back. Two days later she died in the hospital.
As I was leaving prison the doctor told me my next liver biopsy would be due in 2010. After my release in 2009 I went to the liver doctor and told him everything I knew. I fully expected to be prescribed Interferon therapy, an injection taken once a week for six months that, when used in combination with other drugs, is supposed to cure hepatitis. The doctor took blood, lots of blood. He told me we’d wait for those results before deciding on a plan. I told him I wanted to start Humira for treatment of the scalp psoriasis that I had developed. He said I needed to take that up with my other doctor, but that it shouldn’t interfere with the Hep C.
I was feeling very bad one day and proceeded to get worse. I stayed home from work and went to my regular internist. I thought I had strep throat and the flu. The strep culture was negative and I didn’t have a fever. I just felt really bad. A couple of days later I received a phone call from my doctor who said I needed to see the liver doctor ASAP because my liver enzymes were up to 122 – 200 range, which is extremely high for me since for years it had been in the 40’s range. I suspected I needed Interferon Therapy immediately if I didn’t want to get cirrhosis. I made the appointment and was seen in another couple of days. They weren’t surprised or alarmed like I was. They told me I could wait to do the treatment because my last Fibrosure test, a blood test that determines the state of your liver, showed no scaring or inflammation.
They assured me that the scaring can take many years to develop and that I was overreacting. We determined that because the Humira slows down the immune response the liver takes even longer to recover from its daily onslaught, which results in higher enzymes.
The Humira has gotten rid of 80% of the scalp psoriasis. Now my hair looks really healthy. I don’t have to use the smelly dog shampoo that I used to apply every night. Now I only need it maybe once or twice a month. What a huge difference this has been for me, not to mention a great time saver.
Now I just have to deal with the decision on when to start the Hep C treatment with Interferon. Once this is done, I’ll never have to worry about the Hep C again. It will be cleared from my blood once and for all. I’m thinking of waiting until the first of next year. Then I’ll have gotten my yearly salary adjustment and hopefully other things will have conspired so that I can afford to stay home for six months on disability and get through the treatment without going bankrupt. I’m hoping to win the lottery or at least a small portion of it so I can afford the treatment before I get too old. But I wouldn’t have made it this far without the guidance of a former prostitute who had visions of a guardian angel.
Thank you, Wanda. I hope you and your angel are happy.
Posted on July 9, 2011, in Fibrosure Test, Hepatitis Central, Uncategorized and tagged Cirrhosis, Conditions and Diseases, Fibrosure, Firbrosure Test, Health, Hepatitis, Hepatitis C, Hepatitis Central, Humira, Interferon, Liver, Soft drink, Washington State Prison. Bookmark the permalink. 17 Comments.
What a great story, Edna. You write so well because you lay your heart and soul out there! Thank you for sharing your stories. You are an inspiration. Keep on writing!
This forum is a brighter place thanks to your posts. Thanks!
Yup, that’ll do it. You have my aperpication.
You are going to live a long life so you can keep your promise of forever and a day. Thank you, Edna.
And, to the moon and back.
Please keep writing these posts. They help tons.
Thank you, I’m working on it.
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Hey. thank you for opening up my eyes. You inspired me. i have hep c and i figure probably have had it for 30 yrs , geno 3 stage 2-3 . went through tx on & off 4 times for the last 1 1/2 yrs. Sick as hell. my viral load us still at 10 million. Now i see the only thing i probably did to interfer with tx from actually kicking this out of my blood is drinking Monavie everyday. Drs all told me Monavie was ok to drink. As of today i will stop. Not even the Liver Drs. told me sodium benzoate could be why my reds and whites and platletes were so dangerously low they had to stop me 4 times. now i have to wait a few months to see if there is more damage to my liver – if viral load will go down some or if i need to do tx for the 5th time. i will do what ever i have to do to live healthy and live long.
Cindy, sorry it has taken me so long to respond. I’ve been on interferon therapy for the last 13 weeks and have been feeling really bad. On my good days I try to do laundry and clean house. After that there’s not much energy for even typing! Anyway, at this stage the virus is virtually undetectable. A great thing for me. However, my white blood count is falling fast. My insurance company denied to pay for the drug Neupogen and it’s $500.00 per shot without insurance or even more with another brand! I must now stay away from public places where I might pick up a “bug”. That’s OK with me because I’m not looking very well these days. The scalp psoriasis I had developed in prison that I had treated with Humira for the last year ( I had to stop the Humira before I could start the interferon) had devastated my head once again. The plaques are all around the sides of my forehead and ears and are visable. I’ve also lost a lot of hair around the plaque psoriasis so it looks EXTRA ugly! I’ve learned a great deal during this process that I’d be happy to share with you on a more personal level if you’d like to email me as per my contact page.
There are new drugs forthcoming so hold on! As long as you take good care of yourself and watch what you ingest, you should be able to hold out for a treatment that will work for you.
God bless and thank you for writing and sharing some of your story. Please tell us what’s happening now, if you’d like.
Your liver helps your body digest food, store energy and remove poisons. Hepatitis is a swelling of the liver that makes it stop working well. It can lead to scarring, called cirrhosis, or to cancer..
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