My name is Anna. I live in western Sydney. I am 62 years old. I work in a legal firm.
I started injecting drugs in about 1969. At first it was amphetamines, then anything I could crush up and inject. I've injected mescaline and LSD, tranquilisers and speed. In my stupidity, I thought that if you couldn't shoot up a drug it wasn't worth doing. I was living in Canada at the time.
When I came back to Australia, it wasn't very long before I found my drug of choice - heroin. I first went onto a Methadone program in 1975, but Methadone was always considered a backup for withdrawal symptoms for times of unavailability (for whatever reason) of heroin.
I spent the next 19 years as a junkie. I had a co-dependent man who was extremely violent, and he made me do the most horrendous things to obtain junk. Finally, in 1994, I had had enough. I did not want to be a middle aged heroin addict. I decided to leave my man and go to Sydney. This turned out to be very fortuitous. I believe that to quit any addiction, you need to get away, make new friends, find a new drug-free lover and run from your junkie environment.
I moved from Melbourne to Sydney in 1994. I was quite ill for a couple of months but still found a job and attempted to shake off my junkie mentality. I had a little help with Codral Forte, and I drank quite a bit of alcohol.
In 1994 I was diagnosed with psoriasis. I went to a doctor who suggested I take Methotrexate to control my psoriasis. Methotrexate can have a detrimental affect on the liver and its use needs to be supervised. I had a blood test which showed I had hep C. I wasn't concerned at that stage. I didn't take the diagnosis seriously. I continued to live my life "to the fullest". In time, the junkie mentality faded. I was still drinking nearly every day.
I continued to take Methotrexate unsupervised for a long time. In 2003 I found a GP I liked and discovered that I had hypertension which required blood pressure medication. I had regular blood tests. My liver functions were rising. I looked into hep C treatment. In 2006 I went to a gastroenterologist and received advice about treatment. I didn't like the sound of it. I was afraid of the liver biopsy.
In 2007 I stopped drinking completely and discontinued taking Methotrexate. My liver functions were still rising and my GP said I should seriously consider Interferon treatment. I went to a Sydney Hospital where I had an ultrasound, a CT scan and a biopsy. My fear of having a biopsy was completely unfounded as the procedure was painless.
With a positive attitude, I started the interferon/ribavirin treatment in January 2008. I had heard and read some pretty negative things about it, but was adamant that the drugs would not affect me and that I would be able to fly through the 48 weeks of treatment.
Unfortunately, that was not to be the case. Within six weeks after starting treatment I was anemic. As a consequence, I was prescribed "Epo" to boost my red blood cells which I had to inject twice per week. The “Epo” did give me a little more energy.
Prior to the treatment I was a strong advocate for exercise. I walked five days a week for an hour during my lunch period. Sometimes, when I was feeling weak, I had to force myself to exercise. Then the horror of the treatment really began. One Friday evening, seven weeks or so into the treatment after walking during lunch that day, I started to develop cramps in my feet and lower legs. They were excruciating, and I was hopping around the bathroom screaming with pain. The cramps that night lasted about five minutes. I did try and walk again but the same thing happened. I discontinued exercise of any description.
The cramps got worse and worse. I'd be at my keyboard at work and my hands would cramp. Also several times at work, I would drop to my knees crying in agony. I informed the hospital and was told this was an unusual side effect. I was instructed to drink plenty of water and also to drink Gatorade and tonic water. None of these helped, and I suffered a great deal. Every day I would get cramps in my feet, lower legs, the inside of my thighs and hands with no relief in sight. Eventually, the hospital gave me a prescription for 300mg quinine sulphate. I took one tablet daily. They did ease the cramps but made my hands shake and my heart flutter. One night, even though I was taking the quinine, I had cramps in my legs for nine hours straight. It was a terrible night and the memory of it will stay with me forever.
I also had severe pain in my left shoulder and upper back. My GP sent me to a physiotherapist but it didn't help. I was convinced it was tendonitis from my years of typing. I purchased several creams and lotions for this condition but they offered only temporary relief. Once again, the hospital had no answer for this. Another unusual side effect I was told, but wait, there's more . . .
The right side of my face started to swell,, also my right ankle. The swelling in my ankle made it difficult to do anything. Sometimes in the evening, after a day of walking around, my whole body would ache. It was particularly bad in the mornings. I could feel my eyes were swollen when I woke up. The hospital had no answers for me regarding the swelling. My GP told me to take time off work and elevate my leg, which I did, to no effect. Eventually, my GP told me that one of my blood pressure medications, Felodur, could be causing the swelling. I stopped taking them and the swelling went down. The hospital said that Interferon had nothing to do with this problem though I had been taking Felodur for years and had never had an adverse reaction before.
I was prescribed Panadeine Forte for pain. Unfortunately, codeine makes me itch. I couldn't take the tablets as I'd scratch my psoriasis and make it worse. The treatment also had a severely detrimental effect on my psoriasis though not at first, but as I got into the treatment, I got psoriasis in places where I had never had it before. I knew that Interferon would affect psoriasis. It broke out all over my back and I would be unbelievably itchy 24 hours a day. I tried everything to ease the itching. The hospital gave me antihistamines but they were of little help.
After 24 weeks I stopped the treatment. It wasn't working. I still have hep C.
Now my psoriasis is the worst it's ever been. My shoulder has stopped aching and I no longer get cramps. My right leg still hurts when I exercise. It has taken four months for me to recover, but I feel that I will never be as well as I was before the treatment.
Having said all of the above, I do not wish to put anyone off trying to get rid of their hep C with interferon/ribavirin. I should have stopped drinking years earlier and tried the treatment. I'm sure I would have had more success than I did.
I was willing to go to week 48 if I was responding to treatment.
Friday, April 9, 2010
Inspirational Quote by Edward Everett Hale
I am only one, but I am one. I cannot do everything, but I will not let what I cannot do interfere with what I can do.
~Thank you Correen~
~Thank you Correen~
Thursday, April 8, 2010
Geno 1's CAN clear! by Carolyn
Carolyn Diagnosed age 42 grade 1 stage 2 VL 6,170,000 Genotye 1a. Did treatment for 48 weeks. Difficult but a positive support system was major factor. Just today in fact, my 1 year EOT results came back. I am still clear. I'm going to go ahead and call it cured. Geno 1's CAN clear!
Wednesday, April 7, 2010
Beautiful Flower In A Broken Pot by Donna
Our house was directly across the street from the clinic entrance of Johns Hopkins Hospital in Baltimore. We lived downstairs and rented the upstairs rooms to out patients at the clinic.
One summer evening as I was fixing supper, there was a knock at the door. I opened it to see a truly awful looking man. "Why, he's hardly taller than my 8-year-old," I thought as I stared at the stooped, shriveled body. But the appalling thing was his face, lopsided from swelling, red and raw.
Yet his voice was pleasant as he said, "Good evening. I've come to see if you've a room for just one night. I came for a treatment this morning from the eastern shore, and there's no bus 'til morning."
He told me he'd been hunting for a room since noon but with no success, no one seemed to have a room. "I guess it's my face ... I know it looks terrible, but my doctor says with a few more treatments ..."
For a moment I hesitated, but his next words convinced me: "I could sleep in this rocking chair on the porch. My bus leaves early in the morning."
I told him we would find him a bed, but to rest on the porch. I went inside and finished getting supper. When we were ready, I asked the old man if he would join us. "No, thank you. I have plenty." And he held up a brown paper bag.
When I had finished the dishes, I went out on the porch to talk with him a few minutes. It didn't take a long time to see that this old man had an oversized heart crowded into that tiny body. He told me he fished for a living to support his daughter, her 5 children, and her husband, who was hopelessly crippled from a back injury.
He didn't tell it by way of complaint; in fact, every other sentence was preface with a thanks to God for a blessing. He was grateful that no pain accompanied his disease, which was apparently a form of skin cancer. He thanked God for giving him the strength to keep going.
At bedtime, we put a camp cot in the children's room for him. When I got up in the morning, the bed linens were neatly folded and the little man was out on the porch.
He refused breakfast, but just before he left for his bus, haltingly, as if asking a great favor, he said, "Could I please come back and stay the next time I have a treatment? I won't put you out a bit. I can sleep fine in a chair." He paused a moment and then added, "Your children made me feel at home. Grownups are bothered by my face, but children don't seem to mind.."
I told him he was welcome to come again.
And, on his next trip, he arrived a little after 7 in the morning. As a gift, he brought a big fish and a quart of the largest oysters I had ever seen! He said he had shucked them that morning before he left so that they'd be nice and fresh. I knew his bus left at 4:00 a.m. and I wondered what time he had to get up in order to do this for us.
In the years he came to stay overnight with us, there was never a time that he did not bring us fish or oysters or vegetables from his garden.
Other times we received packages in the mail, always by special delivery; fish and oysters packed in a box of fresh young spinach or kale, every leaf carefully washed. Knowing that he must walk 3 miles to mail these, and knowing how little money he had made the gifts doubly precious.
When I received these little remembrances, I often thought of a comment our next-door neighbor made after he left that first morning.
"Did you keep that awful looking man last night? I turned him away! You can lose roomers by putting up such people!"
Maybe we did lose roomers once or twice. But, oh!, if only they could have known him, perhaps their illnesses would have been easier to bear.
I know our family always will be grateful to have known him; from him we learned what it was to accept the bad without complaint and the good with gratitude to God.
Recently I was visiting a friend, who has a greenhouse, as she showed me her flowers, we came to the most beautiful one of all, a golden chrysanthemum, bursting with blooms. But to my great surprise, it was growing in an old dented, rusty bucket. I thought to myself, "If this were my plant, I'd put it in the loveliest container I had!"
My friend changed my mind. "I ran short of pots," she explained, "and knowing how beautiful this one would be, I thought it wouldn't mind starting out in this old pail. It's just for a little while, till I can put it out in the garden."
She must have wondered why I laughed so delightedly, but I was imagining just such a scene in heaven.
"Here's an especially beautiful one," God might have said when he came to the soul of the sweet old fisherman. "He won't mind starting in this small body."
All this happened long ago - and now, in God's garden, how tall this lovely soul must stand.
The LORD does not look at the things man looks at. Man looks at the outward appearance, but the LORD looks at the heart." (1 Samuel 16:7b)
Friends are very special. They make you smile and encourage you to succeed. They lend an ear and they share a word of praise. Show your friends how much you care. Pass this on, and brighten someone's day.
Nothing will happen if you do not decide to pass it along. The only thing that will happen if you DO pass it on is that someone might smile (because of you).
PLEASE, HAVE A WONDERFUL DAY!
One summer evening as I was fixing supper, there was a knock at the door. I opened it to see a truly awful looking man. "Why, he's hardly taller than my 8-year-old," I thought as I stared at the stooped, shriveled body. But the appalling thing was his face, lopsided from swelling, red and raw.
Yet his voice was pleasant as he said, "Good evening. I've come to see if you've a room for just one night. I came for a treatment this morning from the eastern shore, and there's no bus 'til morning."
He told me he'd been hunting for a room since noon but with no success, no one seemed to have a room. "I guess it's my face ... I know it looks terrible, but my doctor says with a few more treatments ..."
For a moment I hesitated, but his next words convinced me: "I could sleep in this rocking chair on the porch. My bus leaves early in the morning."
I told him we would find him a bed, but to rest on the porch. I went inside and finished getting supper. When we were ready, I asked the old man if he would join us. "No, thank you. I have plenty." And he held up a brown paper bag.
When I had finished the dishes, I went out on the porch to talk with him a few minutes. It didn't take a long time to see that this old man had an oversized heart crowded into that tiny body. He told me he fished for a living to support his daughter, her 5 children, and her husband, who was hopelessly crippled from a back injury.
He didn't tell it by way of complaint; in fact, every other sentence was preface with a thanks to God for a blessing. He was grateful that no pain accompanied his disease, which was apparently a form of skin cancer. He thanked God for giving him the strength to keep going.
At bedtime, we put a camp cot in the children's room for him. When I got up in the morning, the bed linens were neatly folded and the little man was out on the porch.
He refused breakfast, but just before he left for his bus, haltingly, as if asking a great favor, he said, "Could I please come back and stay the next time I have a treatment? I won't put you out a bit. I can sleep fine in a chair." He paused a moment and then added, "Your children made me feel at home. Grownups are bothered by my face, but children don't seem to mind.."
I told him he was welcome to come again.
And, on his next trip, he arrived a little after 7 in the morning. As a gift, he brought a big fish and a quart of the largest oysters I had ever seen! He said he had shucked them that morning before he left so that they'd be nice and fresh. I knew his bus left at 4:00 a.m. and I wondered what time he had to get up in order to do this for us.
In the years he came to stay overnight with us, there was never a time that he did not bring us fish or oysters or vegetables from his garden.
Other times we received packages in the mail, always by special delivery; fish and oysters packed in a box of fresh young spinach or kale, every leaf carefully washed. Knowing that he must walk 3 miles to mail these, and knowing how little money he had made the gifts doubly precious.
When I received these little remembrances, I often thought of a comment our next-door neighbor made after he left that first morning.
"Did you keep that awful looking man last night? I turned him away! You can lose roomers by putting up such people!"
Maybe we did lose roomers once or twice. But, oh!, if only they could have known him, perhaps their illnesses would have been easier to bear.
I know our family always will be grateful to have known him; from him we learned what it was to accept the bad without complaint and the good with gratitude to God.
Recently I was visiting a friend, who has a greenhouse, as she showed me her flowers, we came to the most beautiful one of all, a golden chrysanthemum, bursting with blooms. But to my great surprise, it was growing in an old dented, rusty bucket. I thought to myself, "If this were my plant, I'd put it in the loveliest container I had!"
My friend changed my mind. "I ran short of pots," she explained, "and knowing how beautiful this one would be, I thought it wouldn't mind starting out in this old pail. It's just for a little while, till I can put it out in the garden."
She must have wondered why I laughed so delightedly, but I was imagining just such a scene in heaven.
"Here's an especially beautiful one," God might have said when he came to the soul of the sweet old fisherman. "He won't mind starting in this small body."
All this happened long ago - and now, in God's garden, how tall this lovely soul must stand.
The LORD does not look at the things man looks at. Man looks at the outward appearance, but the LORD looks at the heart." (1 Samuel 16:7b)
Friends are very special. They make you smile and encourage you to succeed. They lend an ear and they share a word of praise. Show your friends how much you care. Pass this on, and brighten someone's day.
Nothing will happen if you do not decide to pass it along. The only thing that will happen if you DO pass it on is that someone might smile (because of you).
PLEASE, HAVE A WONDERFUL DAY!
Tuesday, April 6, 2010
Melinda's Story
Hi I am 36 years old and live in Virginia. I found out I was hep c positive in Jan 2001. I had been having problems with my liver enzymes being elevated up to 169 for the alt's and 122 for the ast's. I suffer from chronic pain and fatigue. Doctors can't seem to make up their minds if I have fibromyalgia. I also suffer from sjogrens syndrome. I have already had one salivary gland and lymph node removed in my neck. Very painful surgery. They thought it was a mass. Came back with chronic inflammation and infections. I had my liver biopsy and was very sad when I got the results. I have cirrhosis. I am only 36 and have cirrhosis.
I have finally gotten my scripts for peginterferon and ribavirin. I will be on the maximum doses of both. I am scared and don't where my life is going right now. I am applying for pharmaceutical assistance because I have no money or insurance. I have been out of work for a year now and applying for SSDI. I think you have to be dead to get this. I want to go to work so bad but I get sick to often now to keep a job and it is not fair to my employer if I am sick all the time.
I am going to fight a good fight though and do all I can to fight this virus. I suffer bouts of depression though and hope it will not get me down when on tx. I will let all my friends know if my virus becomes undetectable. Until then I wish everyone luck that carries this dreadful disease. Take care Melinda
I have finally gotten my scripts for peginterferon and ribavirin. I will be on the maximum doses of both. I am scared and don't where my life is going right now. I am applying for pharmaceutical assistance because I have no money or insurance. I have been out of work for a year now and applying for SSDI. I think you have to be dead to get this. I want to go to work so bad but I get sick to often now to keep a job and it is not fair to my employer if I am sick all the time.
I am going to fight a good fight though and do all I can to fight this virus. I suffer bouts of depression though and hope it will not get me down when on tx. I will let all my friends know if my virus becomes undetectable. Until then I wish everyone luck that carries this dreadful disease. Take care Melinda
Dondondoodle's Hep C Story
I’d like to take this opportunity to introduce myself. My name is Don, aka Dondondoodle. I am 49 years old, a father of three wonderful sons. My boys are Steven (18), Jonathan (11), and Elijah (2). I am married to the most wonderful woman in the world, Latoia. We live in Suwanee GA, a small town just north of Atlanta. My wife, kids, and family mean everything in the world to me. We are a family of “love and happiness”. This is the theme of our house and the way that we try to live our day to day lives: with love and happiness.
One morning, three years ago, my family and I received some news that changed our world. My wife and I both had doctor appointments with different doctors. As I pulled into the parking lot for my appointment I received a phone call from my wife with wonderful news that we had a baby one the way. I cried with excitement as I sat in the parking lot. I pulled myself together and went in to see my doctor for a follow up appointment. I was called back to the exam room, where I sat for almost an hour. Finally the doctor came in, sat next to me and told me that she had received the blood test results and that she had bad news. She told me that I had Hepatitis C. I did not know what C was. I had heard of A and B, but not of C. I explained to the doctor that I had been in a major motorcycle accident back in 1981. I had received 27 blood transfusions throughout 15 major surgeries. She explained to me that hepatitis was a blood-to-blood transmitted virus and that the transfusions were more than likely the reason that I had contracted it. Over the next few minutes I was told that I would die from this disease. I left the office and started driving to work. Crying and wondering how I was going to tell my wife. I arrived at work and sat in the parking lot and cried and cried and cried. What had started off as one of the most wonderful days of my life dramatically turned into one of the worst. As I sat in the parking lot at my job I started getting mad. How could God do this to me? What was he, some kind of a jokester? I pulled myself together as much as I could and completed my days work.
Later that evening, as I tried to be happy about my wife’s news, I finally mustered up the strength to tell her about my disease. To my surprise, she seemed to handle it very well. She said that we needed to get a second opinion and to start doing some research. We got on the computer to find lots and lots of information. The next morning I made an appointment with a gastroenterologist. During that visit I learned that having this disease was not a death sentence and that treatments were available. Shame on my primary care doctor. I fired her later that day.
Over the next number of weeks, I had many tests done. Blood tests, an MRI, ultrasound, and a biopsy of my liver. I had learned that I was genotype 1a, that I had advance stages of cirrhosis of the liver, and that I had indications of having liver cancer. The worrying really kicked in. I had also learned that I would be doing treatments and that they were not going to be easy. They would last for 72 weeks instead of the standard 48 to increase my chances of staying clear. Even with that, the odds were not what I was hoping for.
When all of this originally started, I owned and operated two businesses. A furniture manufacturing facility and a furniture and art gallery. I employed 29 people. My doctor told me that stress was not good for me while on treatments. He gave me three months to delegate anything that caused stress before he would let me start treatments. I closed my businesses and started a job at The Home Depot. Although the hours were rough, the insurance had great coverage. As it came close to being time for me to start treatment I talked to the store management, to let them know what was going on and that I was concerned about my hours while on treatment. The store manager was very understanding and told me that The Home Depot had my back and would support me all the way.
I started treatment in September of 2007. I was on Pegasys (180 mg doses) and 1200 mg doses of Ribavirin. The first shot was rough. Within an hour, I had chills worse than I had ever had. Within 2 hours I started getting very sick at my stomach. I went to sleep until the next morning. From the next day on, it wasn’t so bad. I felt like I had a bad flu until the 5th week. After then it seemed to have settled down even more to where it was only giving me the flu-type symptoms for a few days after each shot.
On December 16th my third son, Elijah was born! I was in the room when he came out. I cut the cord. My wife had given birth to a healthy 6 lb, 13 oz beautiful boy.
By the end of the third month of treatment, I was called into the office at work. To my surprise, I was being fired. I had clocked in late for work 4 times that month. Even though I had been late lest than 15 minutes each time and it was on the days after my weekly shot, I had gone against the company policy. They seemed not to care at all and I was fired for the first time in my life. The reason given was ‘failure to follow company policy’. It was a week after my son was born and just a few days before Christmas.
I took the long drive home, dreading, again, breaking the bad news to my wife. Again to my surprise, she was more understanding than I would have ever imagined a wife could be. She told me not to worry, that we could make some changes in our lifestyle and everything would be ok. I was to become a stay at home dad and she would make the money. She really made me feel good by telling me that she thought it would be for the best and that it would save us money by not having to pay childcare and the boys would have more time to spend with their dad. Wow! What a woman. I have been truly blessed.
My wife shortly started back to work from maternity leave. Some days before she would leave for work, she would make a palette in the living room floor and my baby boy and I would spend the day together, lying together, watching “Yo Gabba Gabba”. What a cool show! Anytime I ever felt bad, I would look at my son and he would make me smile and make it all worth while. He seems to be a blessing, sent by God to get me through my sickness.
Over the next 13 months, I suffered from not only the regular side effects of the treatments but also the mild case of psoriasis covering over 90 percent of my body caused by the treatments. My dermatologist had put me on Enbrel and then Humara treatments as well to control the psoriasis. 4 times during my treatments I ended up in the emergency room with my blood levels so low that I had to be emitted to the hospital. Every time the hospital doctors would try to take me off of my hepatitis treatments. I refused. I was determined to make it to the end. On the 70th week I was suffering severely from side effect of not only the hepatitis treatments but the Humara treatments as well. My blood counts were lower than they had ever been. The Humira treatments had caused severe gastrointestinal problems and I was so sick that I could not even drink two sips of water to take my pills with out everything either coming up or running out. My hepatitis doctor at that point said that I had had enough. To stop taking the ribavirin and to stop the Humira shots and to just take my last two pegasys shots.
The virus had become non-detectable after week two of my treatments and I had stayed clear the whole time. I was excited that it was all over with and that I had made it. Within a week I started feeling better than I had remembered ever feeling in a long time. At week two I started not feeling so well. I was back at the doctor to check and see how my blood levels were doing. I mentioned that I was not feeling as well as I did the week before and I asked my doctor to please have my viral load checked while he was having other blood tests done.
Sure enough, the virus was back. I was so upset, mad, and worried. The madness and worrying consumed me. I had to have some relief from the worry. I could not shake it. I prayed for God to give me peace. One day it came to me that there was nothing else that I could do. I had done everything humanly possible. I decided at that point to turn it all over to God. I could not handle the worrying anymore. I prayed that God would take the worry away from me. During my prayers, I realized that God was going to be with me through whatever it was that he was going to do. I had always known that someday I would be going to heaven. I had given my heart to the lord many years before. I told the lord that I was ok with whatever he had in store. I had come to peace with it in my heart and I was free from the worry. I wish that I had done this from the start. It would have made things much easier.
In October, I had two heart attacks, a week apart from each other. I had two arteries that were severely blocked. I now have two stints behind my heart. I am eating healthier than I ever have. I stopped smoking after 37 years. I walked more than I ever have. I am thankful to have been left to live. It truly must not have been my time.
Today is January 23, 2010. I will be starting treatments again on the 27th. I am excited to finally be attempting this again. I will be doing Pegatron this time. I am convinced that it is going to work this time around. I am claiming this victory in the name of God before the battle even starts. I want to get on with my life and I hope to be able to return to work someday.
I find it very rewarding to be helping others with their journey with this terrible disease. I feel that I have much to offer. I have been very blessed with a loving, caring family and I hope that I can pass some of the love around.
We are here to love one another. So let’s do!
Dondondoodle
One morning, three years ago, my family and I received some news that changed our world. My wife and I both had doctor appointments with different doctors. As I pulled into the parking lot for my appointment I received a phone call from my wife with wonderful news that we had a baby one the way. I cried with excitement as I sat in the parking lot. I pulled myself together and went in to see my doctor for a follow up appointment. I was called back to the exam room, where I sat for almost an hour. Finally the doctor came in, sat next to me and told me that she had received the blood test results and that she had bad news. She told me that I had Hepatitis C. I did not know what C was. I had heard of A and B, but not of C. I explained to the doctor that I had been in a major motorcycle accident back in 1981. I had received 27 blood transfusions throughout 15 major surgeries. She explained to me that hepatitis was a blood-to-blood transmitted virus and that the transfusions were more than likely the reason that I had contracted it. Over the next few minutes I was told that I would die from this disease. I left the office and started driving to work. Crying and wondering how I was going to tell my wife. I arrived at work and sat in the parking lot and cried and cried and cried. What had started off as one of the most wonderful days of my life dramatically turned into one of the worst. As I sat in the parking lot at my job I started getting mad. How could God do this to me? What was he, some kind of a jokester? I pulled myself together as much as I could and completed my days work.
Later that evening, as I tried to be happy about my wife’s news, I finally mustered up the strength to tell her about my disease. To my surprise, she seemed to handle it very well. She said that we needed to get a second opinion and to start doing some research. We got on the computer to find lots and lots of information. The next morning I made an appointment with a gastroenterologist. During that visit I learned that having this disease was not a death sentence and that treatments were available. Shame on my primary care doctor. I fired her later that day.
Over the next number of weeks, I had many tests done. Blood tests, an MRI, ultrasound, and a biopsy of my liver. I had learned that I was genotype 1a, that I had advance stages of cirrhosis of the liver, and that I had indications of having liver cancer. The worrying really kicked in. I had also learned that I would be doing treatments and that they were not going to be easy. They would last for 72 weeks instead of the standard 48 to increase my chances of staying clear. Even with that, the odds were not what I was hoping for.
When all of this originally started, I owned and operated two businesses. A furniture manufacturing facility and a furniture and art gallery. I employed 29 people. My doctor told me that stress was not good for me while on treatments. He gave me three months to delegate anything that caused stress before he would let me start treatments. I closed my businesses and started a job at The Home Depot. Although the hours were rough, the insurance had great coverage. As it came close to being time for me to start treatment I talked to the store management, to let them know what was going on and that I was concerned about my hours while on treatment. The store manager was very understanding and told me that The Home Depot had my back and would support me all the way.
I started treatment in September of 2007. I was on Pegasys (180 mg doses) and 1200 mg doses of Ribavirin. The first shot was rough. Within an hour, I had chills worse than I had ever had. Within 2 hours I started getting very sick at my stomach. I went to sleep until the next morning. From the next day on, it wasn’t so bad. I felt like I had a bad flu until the 5th week. After then it seemed to have settled down even more to where it was only giving me the flu-type symptoms for a few days after each shot.
On December 16th my third son, Elijah was born! I was in the room when he came out. I cut the cord. My wife had given birth to a healthy 6 lb, 13 oz beautiful boy.
By the end of the third month of treatment, I was called into the office at work. To my surprise, I was being fired. I had clocked in late for work 4 times that month. Even though I had been late lest than 15 minutes each time and it was on the days after my weekly shot, I had gone against the company policy. They seemed not to care at all and I was fired for the first time in my life. The reason given was ‘failure to follow company policy’. It was a week after my son was born and just a few days before Christmas.
I took the long drive home, dreading, again, breaking the bad news to my wife. Again to my surprise, she was more understanding than I would have ever imagined a wife could be. She told me not to worry, that we could make some changes in our lifestyle and everything would be ok. I was to become a stay at home dad and she would make the money. She really made me feel good by telling me that she thought it would be for the best and that it would save us money by not having to pay childcare and the boys would have more time to spend with their dad. Wow! What a woman. I have been truly blessed.
My wife shortly started back to work from maternity leave. Some days before she would leave for work, she would make a palette in the living room floor and my baby boy and I would spend the day together, lying together, watching “Yo Gabba Gabba”. What a cool show! Anytime I ever felt bad, I would look at my son and he would make me smile and make it all worth while. He seems to be a blessing, sent by God to get me through my sickness.
Over the next 13 months, I suffered from not only the regular side effects of the treatments but also the mild case of psoriasis covering over 90 percent of my body caused by the treatments. My dermatologist had put me on Enbrel and then Humara treatments as well to control the psoriasis. 4 times during my treatments I ended up in the emergency room with my blood levels so low that I had to be emitted to the hospital. Every time the hospital doctors would try to take me off of my hepatitis treatments. I refused. I was determined to make it to the end. On the 70th week I was suffering severely from side effect of not only the hepatitis treatments but the Humara treatments as well. My blood counts were lower than they had ever been. The Humira treatments had caused severe gastrointestinal problems and I was so sick that I could not even drink two sips of water to take my pills with out everything either coming up or running out. My hepatitis doctor at that point said that I had had enough. To stop taking the ribavirin and to stop the Humira shots and to just take my last two pegasys shots.
The virus had become non-detectable after week two of my treatments and I had stayed clear the whole time. I was excited that it was all over with and that I had made it. Within a week I started feeling better than I had remembered ever feeling in a long time. At week two I started not feeling so well. I was back at the doctor to check and see how my blood levels were doing. I mentioned that I was not feeling as well as I did the week before and I asked my doctor to please have my viral load checked while he was having other blood tests done.
Sure enough, the virus was back. I was so upset, mad, and worried. The madness and worrying consumed me. I had to have some relief from the worry. I could not shake it. I prayed for God to give me peace. One day it came to me that there was nothing else that I could do. I had done everything humanly possible. I decided at that point to turn it all over to God. I could not handle the worrying anymore. I prayed that God would take the worry away from me. During my prayers, I realized that God was going to be with me through whatever it was that he was going to do. I had always known that someday I would be going to heaven. I had given my heart to the lord many years before. I told the lord that I was ok with whatever he had in store. I had come to peace with it in my heart and I was free from the worry. I wish that I had done this from the start. It would have made things much easier.
In October, I had two heart attacks, a week apart from each other. I had two arteries that were severely blocked. I now have two stints behind my heart. I am eating healthier than I ever have. I stopped smoking after 37 years. I walked more than I ever have. I am thankful to have been left to live. It truly must not have been my time.
Today is January 23, 2010. I will be starting treatments again on the 27th. I am excited to finally be attempting this again. I will be doing Pegatron this time. I am convinced that it is going to work this time around. I am claiming this victory in the name of God before the battle even starts. I want to get on with my life and I hope to be able to return to work someday.
I find it very rewarding to be helping others with their journey with this terrible disease. I feel that I have much to offer. I have been very blessed with a loving, caring family and I hope that I can pass some of the love around.
We are here to love one another. So let’s do!
Dondondoodle
Monday, April 5, 2010
Get Tested - Brooklyn Eagle Article
Everyone Should Be Tested for ‘Hidden Disease’ of Hepatitis C
by Brooklyn Eagle (edit@brooklyneagle.net), published online 09-23-2009
By Betty Vega
There are an estimated 200 million people worldwide infected with HCV — ”making it one of the greatest public health threats faced in this century, and perhaps one of the greatest threats to be faced in the next century. Approximately five million people across the country are infected with Hepatitis C. It is five times more prevalent than AIDS and approximately 10,000 people die annually as a result of HCV. 65% of those infected with Hepatitis C are between 30 and 49 years old.
Hepatitis C is often called a “hidden disease” or “silent epidemic” because those infected with HCV are often unaware for 10-30 years after exposure. The symptoms of HCV are easy to misdiagnose and often resemble the flu or a variety of other conditions. When symptoms are present they can include extreme fatigue, nausea, liver pain, and depression.
Hepatitis C is a blood-borne virus that predominantly infects the cells of the liver. This causes inflammation of and sometimes significant damage to the liver, thus affecting its ability to perform essential functions. There are several ways one can contract the virus. Having had a blood transfusion prior to 1992, being born to a mother with hepatitis C or needing a C-section; having sex with an infected person (if blood is present); being tattooed or pierced with unspecialized tools that were used on an infected person; getting stuck accidentally with a needle used on an infected person; sharing an infected person’s razor, hairbrush, comb or toothbrush; sharing drug needles with an infected person and manicures or pedicures.
This is where the need for education and awareness arises. Through standard blood workup procedures, hepatitis C will not show up. Unfortunately even with elevated liver enzymes, doctors don’t equate that with hepatitis C. For the most part, physicians don’t know nearly enough about the virus. People should see a gastroenterologist or better yet, a hepatologist, who will have more knowledge about diagnosis for hepatitis C. The only way to determine if you have this virus is by having a hepatitis C test, exclusively.
Without treatment, approximately 20% of those untreated will develop cirrhosis, (fibrosis occurs when extensive scar tissue develops), liver cancer, or will need liver transplantation (when liver no longer can function) or face death.
I went through years of annual blood workups displaying elevated liver enzymes and was told it meant nothing. Could be from taking other meds or being overweight; never going forward with any other testing. I met a new primary care physician in 2002 who, after seeing my blood results, told me to get this other test I had never heard about. So I went to the lab, got tested for hepatitis C and got the phone call at work. I was positive.
My reactions were mixed; mostly shock. I did, however, follow her directions and saw a hepatologist who treated me for a year and a half. The news was wonderful. I had cleared this virus. It was four years September 13th. I’m one of the lucky ones. This year I lost a couple of friends who were never treated for the virus. They became quite ill and eventually their livers gave out. It doesn’t have to be that way. I’ll never know how I got it or exactly how long ago. At this point it doesn’t matter. Getting tested is the only thing that matters. It’s life or death.
Betty Vega, a hepatitis C survivor, is support group facilitator for the disease at Long Island College Hospital. She can be reached at BettyV444@aol.com for more information.
by Brooklyn Eagle (edit@brooklyneagle.net), published online 09-23-2009
By Betty Vega
There are an estimated 200 million people worldwide infected with HCV — ”making it one of the greatest public health threats faced in this century, and perhaps one of the greatest threats to be faced in the next century. Approximately five million people across the country are infected with Hepatitis C. It is five times more prevalent than AIDS and approximately 10,000 people die annually as a result of HCV. 65% of those infected with Hepatitis C are between 30 and 49 years old.
Hepatitis C is often called a “hidden disease” or “silent epidemic” because those infected with HCV are often unaware for 10-30 years after exposure. The symptoms of HCV are easy to misdiagnose and often resemble the flu or a variety of other conditions. When symptoms are present they can include extreme fatigue, nausea, liver pain, and depression.
Hepatitis C is a blood-borne virus that predominantly infects the cells of the liver. This causes inflammation of and sometimes significant damage to the liver, thus affecting its ability to perform essential functions. There are several ways one can contract the virus. Having had a blood transfusion prior to 1992, being born to a mother with hepatitis C or needing a C-section; having sex with an infected person (if blood is present); being tattooed or pierced with unspecialized tools that were used on an infected person; getting stuck accidentally with a needle used on an infected person; sharing an infected person’s razor, hairbrush, comb or toothbrush; sharing drug needles with an infected person and manicures or pedicures.
This is where the need for education and awareness arises. Through standard blood workup procedures, hepatitis C will not show up. Unfortunately even with elevated liver enzymes, doctors don’t equate that with hepatitis C. For the most part, physicians don’t know nearly enough about the virus. People should see a gastroenterologist or better yet, a hepatologist, who will have more knowledge about diagnosis for hepatitis C. The only way to determine if you have this virus is by having a hepatitis C test, exclusively.
Without treatment, approximately 20% of those untreated will develop cirrhosis, (fibrosis occurs when extensive scar tissue develops), liver cancer, or will need liver transplantation (when liver no longer can function) or face death.
I went through years of annual blood workups displaying elevated liver enzymes and was told it meant nothing. Could be from taking other meds or being overweight; never going forward with any other testing. I met a new primary care physician in 2002 who, after seeing my blood results, told me to get this other test I had never heard about. So I went to the lab, got tested for hepatitis C and got the phone call at work. I was positive.
My reactions were mixed; mostly shock. I did, however, follow her directions and saw a hepatologist who treated me for a year and a half. The news was wonderful. I had cleared this virus. It was four years September 13th. I’m one of the lucky ones. This year I lost a couple of friends who were never treated for the virus. They became quite ill and eventually their livers gave out. It doesn’t have to be that way. I’ll never know how I got it or exactly how long ago. At this point it doesn’t matter. Getting tested is the only thing that matters. It’s life or death.
Betty Vega, a hepatitis C survivor, is support group facilitator for the disease at Long Island College Hospital. She can be reached at BettyV444@aol.com for more information.
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