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
Tuesday, April 6, 2010
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
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