Aa
my HCV treatment story
I would like to apologize in advance for the long-winded post but I was thinking about doing this for a while. I am not a new guy here as I used to visit this site under alb572 nickname.
A conversation with someone earlier today made me come back to this forum. I thought I will do this right after my end of treatment but as I finished the treatment normal life and daily things took over my attention and I found plenty of excuses to postpone this post. I hope that by sharing the story of my treatment I will be able to at least provide a little encouragement to those who about to begin their journey or thinking about treatment in the near future.
When I was diagnosed with HCV in 2010 I was 28 years old, had a great job and lots of plans for future. I always felt like I was in control and my life was going where I wanted it to go. Once I got bad news that was not the case anymore. Once I heard the diagnosis I was totally devastated. The world I was living in has completely changed in one day. All of my grandiose plans for future fell apart and for the first time in my life I learned about depression first hand. Things that were so important to me before (career, top business school application, etc) became absolutely meaningless. Without further details I can tell that it was the lowest point in my life and I hope it will always be.
Now looking back I can say that this event and treatment also has changed me as a person and allowed me to see the things that are truly important (at least to me) in this life. The challenging part for me is to maintain that view once you done with the rough part and get back into the day-to-day routine of the world that tend to put so much emphasis on the pseudo important things.
After I finally overcame the shock from diagnosis and the state of misery I was in for almost a month I got on the kwest to learn as much about HCV as possible and to equip myself with knowledge. I do believe that in the case with HCV knowledge is power. I read on the topic for weeks and this forum was simply godsend. The amount of support and useful information on this site is just incredible. I quickly learned that Hep C was not a death sentence and that there are treatments out there. Once I knew that for me it was never a question whether to treat or not (I did know my liver health (stage1-2/grade1-2 at that time). Since there was a treatment with even decent chance of beating that thing I was determined to fight it. Of course, I was aware of the drug resistance and was considering all options available –waiting for the new drugs (although I always disliked this idea), clinical trials, Interferon/Riba treatment.
People who shared their stories of multiple treatments and 72+ weeks fights and their successes were inspiration for me. After doing research and using a many advises from forum guru’s I found a great hepatologist in the major teaching medical center I did all necessary tests including biopsy. After educating myself on all I could find about HCV and what to inspect from treatment I was ready to start my own journey.
Luck was also on my side. After waiting for 1.5 year from the time diagnosis I started treatment just months after the new protease inhibitors drugs (I used Telapravir aka Incivek) were approved by FDA and became available to patients. I went out to the medical center, got my 1-month supply of pills and bought all recommended supplies (from biotine mouth wash to high-fat food) that I might need throughout the treatment.
The evening after the first shot was rough but nothing that I wasn’t prepared for. I was so happy to have started the treatment that I was ready to tolerate a lot. It is funny that I still remember it but after I went through the “1st shot fever” episode which was not fun I went to bed and had the best sleep I had in years. Of course, the alarm did its duty and I woke up at 6 am the next morning with my pills in one hand and a jar of peanut butter in the other.
And then the days began to go by. I continued to work full time (40-50 hr a week) and maintained as normal lifestyle as possible. I ate well, took some walks (runs became a bit challenging after a while) and just did the best I could. I had many symptoms (hair falling out, painful bathroom episodes from Incivek, annoying skin rushes and mouth dryness) but was blessed to escape some of the other major ones. I never had issues sleeping (actually I slept better than ever), my blood work stayed in good shape (HGB never dipped below 12.6, the lowest WBC was 2.9) throughout the treatment. Most importantly I never lost fighting spirit and experienced any episodes of depression. I loved the fact that after about two decades of abuse my liver was getting needed break and that with every shot and every pill I am putting myself closer to beating that thing. What also was helped was understanding that after years of feeling that something was not right with my body I believed (did not know for sure ot that point) that I was kicking butt of the thing that caused me to feel like I was 50.
Treatment was not pleasant but it was more than just manageable for me. It also helped that I was undetected after 4 weeks. And I stayed that way throughout the whole treatment, which was only 24 weeks for me. Based on the way felt I could almost feel (I know some of you might think that it is total bs) that the virus was gone. By the end of the treatment I was so used to it that somwere in the 20sh week after coming from work on Friday and taking a “bullet” of Interferon and some “magic Riba pills”:) I went out to the dance club with my friends and stayed out until 3 a.m.
The treatment ended and things got back to normal soon—I took a vacation and celebrated the EOT in beautiful mountains of North Carolina. After the treatment all of the side effects went away fairly quickly (maybe 2 maybe 3 months—I don’t remember already) except for some of my hair that never returned to its owner:). I guess they did not like me anyways and I was losing them fast before treatment began.
Why am I writing this you might ask? I am not doing it to impress anyone or to show how easy I had it. I know that many things were on my side (age, gender, physical condition, genotype (1b), and low liver damage (S1/G1)). I also understand that many who are considering doing treatment are in different positions and that treatment effects everyone differently. The purpose of this post is to show that along with stories of tough and miserable treatments there are stories similar to mine. Like it was mentioned on this forum many-many times it is just that many of stories like mine never make it to this forum because people who don’t have a hard time with treatment tend to not post much here.
When I was deciding the best option on treating (or not) HCV along with other factors that I considered, it is the stories of success and “doable treatment” that helped me greatly. These accounts made me realize that I was making a right decision and encouraged me to put up the best fight I could. Hope that my story will do the same for someone else.
Merry Christmas and good luck with whatever battle you are fighting at this time.
A conversation with someone earlier today made me come back to this forum. I thought I will do this right after my end of treatment but as I finished the treatment normal life and daily things took over my attention and I found plenty of excuses to postpone this post. I hope that by sharing the story of my treatment I will be able to at least provide a little encouragement to those who about to begin their journey or thinking about treatment in the near future.
When I was diagnosed with HCV in 2010 I was 28 years old, had a great job and lots of plans for future. I always felt like I was in control and my life was going where I wanted it to go. Once I got bad news that was not the case anymore. Once I heard the diagnosis I was totally devastated. The world I was living in has completely changed in one day. All of my grandiose plans for future fell apart and for the first time in my life I learned about depression first hand. Things that were so important to me before (career, top business school application, etc) became absolutely meaningless. Without further details I can tell that it was the lowest point in my life and I hope it will always be.
Now looking back I can say that this event and treatment also has changed me as a person and allowed me to see the things that are truly important (at least to me) in this life. The challenging part for me is to maintain that view once you done with the rough part and get back into the day-to-day routine of the world that tend to put so much emphasis on the pseudo important things.
After I finally overcame the shock from diagnosis and the state of misery I was in for almost a month I got on the kwest to learn as much about HCV as possible and to equip myself with knowledge. I do believe that in the case with HCV knowledge is power. I read on the topic for weeks and this forum was simply godsend. The amount of support and useful information on this site is just incredible. I quickly learned that Hep C was not a death sentence and that there are treatments out there. Once I knew that for me it was never a question whether to treat or not (I did know my liver health (stage1-2/grade1-2 at that time). Since there was a treatment with even decent chance of beating that thing I was determined to fight it. Of course, I was aware of the drug resistance and was considering all options available –waiting for the new drugs (although I always disliked this idea), clinical trials, Interferon/Riba treatment.
People who shared their stories of multiple treatments and 72+ weeks fights and their successes were inspiration for me. After doing research and using a many advises from forum guru’s I found a great hepatologist in the major teaching medical center I did all necessary tests including biopsy. After educating myself on all I could find about HCV and what to inspect from treatment I was ready to start my own journey.
Luck was also on my side. After waiting for 1.5 year from the time diagnosis I started treatment just months after the new protease inhibitors drugs (I used Telapravir aka Incivek) were approved by FDA and became available to patients. I went out to the medical center, got my 1-month supply of pills and bought all recommended supplies (from biotine mouth wash to high-fat food) that I might need throughout the treatment.
The evening after the first shot was rough but nothing that I wasn’t prepared for. I was so happy to have started the treatment that I was ready to tolerate a lot. It is funny that I still remember it but after I went through the “1st shot fever” episode which was not fun I went to bed and had the best sleep I had in years. Of course, the alarm did its duty and I woke up at 6 am the next morning with my pills in one hand and a jar of peanut butter in the other.
And then the days began to go by. I continued to work full time (40-50 hr a week) and maintained as normal lifestyle as possible. I ate well, took some walks (runs became a bit challenging after a while) and just did the best I could. I had many symptoms (hair falling out, painful bathroom episodes from Incivek, annoying skin rushes and mouth dryness) but was blessed to escape some of the other major ones. I never had issues sleeping (actually I slept better than ever), my blood work stayed in good shape (HGB never dipped below 12.6, the lowest WBC was 2.9) throughout the treatment. Most importantly I never lost fighting spirit and experienced any episodes of depression. I loved the fact that after about two decades of abuse my liver was getting needed break and that with every shot and every pill I am putting myself closer to beating that thing. What also was helped was understanding that after years of feeling that something was not right with my body I believed (did not know for sure ot that point) that I was kicking butt of the thing that caused me to feel like I was 50.
Treatment was not pleasant but it was more than just manageable for me. It also helped that I was undetected after 4 weeks. And I stayed that way throughout the whole treatment, which was only 24 weeks for me. Based on the way felt I could almost feel (I know some of you might think that it is total bs) that the virus was gone. By the end of the treatment I was so used to it that somwere in the 20sh week after coming from work on Friday and taking a “bullet” of Interferon and some “magic Riba pills”:) I went out to the dance club with my friends and stayed out until 3 a.m.
The treatment ended and things got back to normal soon—I took a vacation and celebrated the EOT in beautiful mountains of North Carolina. After the treatment all of the side effects went away fairly quickly (maybe 2 maybe 3 months—I don’t remember already) except for some of my hair that never returned to its owner:). I guess they did not like me anyways and I was losing them fast before treatment began.
Why am I writing this you might ask? I am not doing it to impress anyone or to show how easy I had it. I know that many things were on my side (age, gender, physical condition, genotype (1b), and low liver damage (S1/G1)). I also understand that many who are considering doing treatment are in different positions and that treatment effects everyone differently. The purpose of this post is to show that along with stories of tough and miserable treatments there are stories similar to mine. Like it was mentioned on this forum many-many times it is just that many of stories like mine never make it to this forum because people who don’t have a hard time with treatment tend to not post much here.
When I was deciding the best option on treating (or not) HCV along with other factors that I considered, it is the stories of success and “doable treatment” that helped me greatly. These accounts made me realize that I was making a right decision and encouraged me to put up the best fight I could. Hope that my story will do the same for someone else.
Merry Christmas and good luck with whatever battle you are fighting at this time.
Thank you for the kind words. I really am glad that you beat it. I will try again when the time is right. Right now just living a liver friendly lifestyle. Thank goodness I've never been much of a drinker! :)
Please don't get discouraged. I am sure that those 6 months did not go unnoticed by your liver--it took a well-deserved brake.
I was reading the forum lately and it looks like with new and more effective drugs coming up and many better ones in the pipeline HCV and hardcore treatments will be the thing of the past in 10 years.
I am certain that you will put HCV out on your next run--just keep on fighting.
All the best and happy holidays.
I was reading the forum lately and it looks like with new and more effective drugs coming up and many better ones in the pipeline HCV and hardcore treatments will be the thing of the past in 10 years.
I am certain that you will put HCV out on your next run--just keep on fighting.
All the best and happy holidays.
Congratulations! It's amazing what the body can do. I hope that in March I can share our family's experience.
Sounds very similar to my story except that the dr. did not warn me that the first shot would make me sick and I never achieved und and stopped tx after torturing myself with interferon, victrelis & ribavirin for 6 months. Now I am back to normal and back where I started and $10,000 deeper in debt. I'm in no hurry to try an interferon based tx again. Glad you beat it but don't know why I failed except maybe genetics.
Congratulations! Your story is important. Thanks for taking the time to
share it.
Your initial reaction to the news is, I'm sure, very common. The most important thing that you did was educate yourself about the virus. It is important that those who have this virus feel some sense of control and take an active role in their healthcare.
I hope those who are just now finding out they have this virus learn from your experience. With the new treatments, it will be even easier for them.
(No need for peanut butter unless they really love it! :-)
Wishing you a bright and wonderful future with the knowledge that you took on a potentially life threatening virus and beat it! That speaks volumes about you.
Nan
share it.
Your initial reaction to the news is, I'm sure, very common. The most important thing that you did was educate yourself about the virus. It is important that those who have this virus feel some sense of control and take an active role in their healthcare.
I hope those who are just now finding out they have this virus learn from your experience. With the new treatments, it will be even easier for them.
(No need for peanut butter unless they really love it! :-)
Wishing you a bright and wonderful future with the knowledge that you took on a potentially life threatening virus and beat it! That speaks volumes about you.
Nan
Long winded? No
Thorough, inspirational, and encouraging? Yes
That was a wonderful and meaningful story to all that have done, will do, or are considering treatment. Thanks for sharing and enjoy life!
Thorough, inspirational, and encouraging? Yes
That was a wonderful and meaningful story to all that have done, will do, or are considering treatment. Thanks for sharing and enjoy life!
Great story, hopeful. Gives a lot of hope to people in a similar situation.
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