Aa
My story....
Wow, I am so glad I found this website it is really refreshing. I am a 30 year old male. I was diagnosed with Hep C. Here is a little background. I consider myself a young, healthy, in shape male who has always enjoyed life. My only issues before this was that I had "mild" hemophilia. When I say mild, I mean I lived a normal life growing up, playing contact sports, outdoors, basically whatever I wanted. Hemophilia only showed up when I had a major injury, which was rare. Anyway the fact of my age, is that during the 1980's not many people knew much about hemophilia. When I was injured as a child I received several blood transfusions, which as you know back then the blood was not tested.
I was very lucky as one of the young hemophiliacs in the 1980's who did not contract aids from bad blood transfusions. So over the years I grew and led a normal life. No one ever knew I had hemophilia unless I let them know. Anyway as I got older I continued playing sports. A year and a half ago I was playing pick up basketball. I tore my ACL in the process. Well I had to have surgery and in doing so I needed blood products. They came in with a weird look on their face stating that I had tested positive for Hep C. I was blown away, I was like what? How could that be, I was tested 3 times a year by my doctor since I was a kid. They informed me that just because I tested positive didnt mean I had it. They had to test further. So I wasnt freaked out yet, I assumed it was a mistake. Anyway I told know one because I was totally freaked. Anyway sure enough I tested positive. They said you cant tell how or when you got it. They said my odds are like 95% because I was a hemophiliac I got it in a bad transfusion and they never checked it as a kid and didnt know otherwise. Back then my liver count were normal.
Anyway so now what. I totally freaked. So they sent me to a specialist. By the way I told no one. I went and he said yes, you have the virus. I was soooo freaked. I had always associated Hep C with people with bad habits like druggies or drug users, etc. its not a pretty reputable disease. Plus I had felt so healthy all my life. In addition, I knew people died from it so it freaked me out. My doctor could not do a biopsy because of my hemophilia. So the only option was treatment and to take regular blood tests. My doctor said pretty much thats it. I said well when do I begin and he said now. He told me because I was young and because my stage wasnt advanced I had a good chance. Still, I told no one, I researched the internet not finding anything. I decided to take treatemnt. Well let me tell you my insurance balked and thank god my doctor found a special company that gives discounts on the meds. My injections and pills cost me like $75 a month after insurance.
I ordered the meds and they sat there for like a month. I was scared to start them and scared I guess to admit that I had it. So finally I came to grips with it. Still I told no one, my wife, family, etc. no one. So started taking the pills and injections. At first nothing. Now remember they give you a refresher course on what it will feel like as far as side affects. But they tell you that each person is different. Well I will tell you I damn near everyone in the book. Below is my list of side effects.
1. Hair loss - Luckily I already had thick hair. But yes, I had hair loss, not alot for people to notice. But i did. I got a haircut like once every 2 to 3 months. My hair was all over the bathroom and in the shower.etc,. your haor feels so dry and dead.
2. Dry Skin - OMG, you will go through like a pound of lotion. you get so dryed out so fast. Do not take hot showers. It makes it worse. Also direct exposure to hot sunlight etc. is bad. Like cutting the grass and the beach you get very dehydrated. almost to the point of illness. Dry eyes, dry mouth
3. Loss of appetite- I lost 20 pounds easy. I havent worked out in a year but people think I have been dieting etc. But nope, you just lose weight plain and simple.
4. Flu like symptoms - Worst part to me. Some days you get chills, lost of days you cant make it thru because you feel like your whole body is 400 lbs. All you want to do is go home and get under the covers and sleep. Its not fun. Chills as well.
5. Mood swings - Yea, you will bite peoples heads off, work, family, etc. It happens, this is where people notice a differece. You have a short fuse alot.
6. water loss- I drink like 400 glasses of water a day. You have to, it makes you feel better and counters the drying affect of the medicine. But, the bad thing is that you **** like a race horse and I mean all day and night, like all the time.
7. Blurred vision - Not so much, but at certain times your eyes do lose focus.
8. Sex drive - This sucks, you lose your sex drive, etc. and other things. Plus the fact the medicine is so strong you cant get pregnant due to major birth defects, so with that in your head, it totally freaks you out..lol.
Anyway my doctor did my treatment weird. I was go in once a month for blood work and keep taking my meds for 12 months. Anyway he would email me the results with details. At first, the 3 months i was still positive. The boom I was negative. Stayed that way till this week. Just finished treatment been negative for 9 months. It has been hell. Especially coming off the meds. Anyway finally told the wife and close family only. The dont understand either. Hell I have been on treatment and now finished and I still dont know what it all means.
They doctor said that I am negative but that I still have the virus if that makes since. I am supposed to come back in 3 and 6 months for more tests. He says hopefully I can stay negative for the rest of my life who knows. Oh yea, right when I found out I was trying to get life insurance, good luck with that. I got rejected with that and put on a waiver for high risk. hahah, so ask me questions or whatever. I can tell ya. I have many questions myself. Like what happens after this.......
I was very lucky as one of the young hemophiliacs in the 1980's who did not contract aids from bad blood transfusions. So over the years I grew and led a normal life. No one ever knew I had hemophilia unless I let them know. Anyway as I got older I continued playing sports. A year and a half ago I was playing pick up basketball. I tore my ACL in the process. Well I had to have surgery and in doing so I needed blood products. They came in with a weird look on their face stating that I had tested positive for Hep C. I was blown away, I was like what? How could that be, I was tested 3 times a year by my doctor since I was a kid. They informed me that just because I tested positive didnt mean I had it. They had to test further. So I wasnt freaked out yet, I assumed it was a mistake. Anyway I told know one because I was totally freaked. Anyway sure enough I tested positive. They said you cant tell how or when you got it. They said my odds are like 95% because I was a hemophiliac I got it in a bad transfusion and they never checked it as a kid and didnt know otherwise. Back then my liver count were normal.
Anyway so now what. I totally freaked. So they sent me to a specialist. By the way I told no one. I went and he said yes, you have the virus. I was soooo freaked. I had always associated Hep C with people with bad habits like druggies or drug users, etc. its not a pretty reputable disease. Plus I had felt so healthy all my life. In addition, I knew people died from it so it freaked me out. My doctor could not do a biopsy because of my hemophilia. So the only option was treatment and to take regular blood tests. My doctor said pretty much thats it. I said well when do I begin and he said now. He told me because I was young and because my stage wasnt advanced I had a good chance. Still, I told no one, I researched the internet not finding anything. I decided to take treatemnt. Well let me tell you my insurance balked and thank god my doctor found a special company that gives discounts on the meds. My injections and pills cost me like $75 a month after insurance.
I ordered the meds and they sat there for like a month. I was scared to start them and scared I guess to admit that I had it. So finally I came to grips with it. Still I told no one, my wife, family, etc. no one. So started taking the pills and injections. At first nothing. Now remember they give you a refresher course on what it will feel like as far as side affects. But they tell you that each person is different. Well I will tell you I damn near everyone in the book. Below is my list of side effects.
1. Hair loss - Luckily I already had thick hair. But yes, I had hair loss, not alot for people to notice. But i did. I got a haircut like once every 2 to 3 months. My hair was all over the bathroom and in the shower.etc,. your haor feels so dry and dead.
2. Dry Skin - OMG, you will go through like a pound of lotion. you get so dryed out so fast. Do not take hot showers. It makes it worse. Also direct exposure to hot sunlight etc. is bad. Like cutting the grass and the beach you get very dehydrated. almost to the point of illness. Dry eyes, dry mouth
3. Loss of appetite- I lost 20 pounds easy. I havent worked out in a year but people think I have been dieting etc. But nope, you just lose weight plain and simple.
4. Flu like symptoms - Worst part to me. Some days you get chills, lost of days you cant make it thru because you feel like your whole body is 400 lbs. All you want to do is go home and get under the covers and sleep. Its not fun. Chills as well.
5. Mood swings - Yea, you will bite peoples heads off, work, family, etc. It happens, this is where people notice a differece. You have a short fuse alot.
6. water loss- I drink like 400 glasses of water a day. You have to, it makes you feel better and counters the drying affect of the medicine. But, the bad thing is that you **** like a race horse and I mean all day and night, like all the time.
7. Blurred vision - Not so much, but at certain times your eyes do lose focus.
8. Sex drive - This sucks, you lose your sex drive, etc. and other things. Plus the fact the medicine is so strong you cant get pregnant due to major birth defects, so with that in your head, it totally freaks you out..lol.
Anyway my doctor did my treatment weird. I was go in once a month for blood work and keep taking my meds for 12 months. Anyway he would email me the results with details. At first, the 3 months i was still positive. The boom I was negative. Stayed that way till this week. Just finished treatment been negative for 9 months. It has been hell. Especially coming off the meds. Anyway finally told the wife and close family only. The dont understand either. Hell I have been on treatment and now finished and I still dont know what it all means.
They doctor said that I am negative but that I still have the virus if that makes since. I am supposed to come back in 3 and 6 months for more tests. He says hopefully I can stay negative for the rest of my life who knows. Oh yea, right when I found out I was trying to get life insurance, good luck with that. I got rejected with that and put on a waiver for high risk. hahah, so ask me questions or whatever. I can tell ya. I have many questions myself. Like what happens after this.......
When you say you have been "negative for 9 months" I believe that you mean for the last 9 months of your treatment. Your doc wants to test again at 3 months and 6 months after completion of treatment. This is because, if you are still negative 6 months after you quit taking the interferon and Ribavirin, this is considered Sustained Virological Response (SVR). Among people who are still negative 6 months after treatment relapse (return of the virological infection) is very rare.
It sounds like you have done the hard part. I'll keep my fingers crossed that your virus is still undetectable (UND) at 3 and 6 months post treatment! I hope congratulations will be in order in a few months. Go Crimson, Go Tide! :)
It sounds like you have done the hard part. I'll keep my fingers crossed that your virus is still undetectable (UND) at 3 and 6 months post treatment! I hope congratulations will be in order in a few months. Go Crimson, Go Tide! :)
Wow this is amazing to me that you could go through this without the support of your family because they did not know.... that had to be somewhat stressful for you...
That is awesome that you are negative...what geneotype are you? I am begining this journey and I am happy I have the support of my spouse and friends. I think I will need them through the tough times.
It sounds like you have a good Doctor and that you are having success getting rid of the virus. Life is good and you are on the path to a full recovery...... Just fyi, my husband tested this past week and he is negative...we have been together 11 years.
Good luck with everything
That is awesome that you are negative...what geneotype are you? I am begining this journey and I am happy I have the support of my spouse and friends. I think I will need them through the tough times.
It sounds like you have a good Doctor and that you are having success getting rid of the virus. Life is good and you are on the path to a full recovery...... Just fyi, my husband tested this past week and he is negative...we have been together 11 years.
Good luck with everything
Welcome to the club - nice to meet you.
What you're saying is that you're in UND status ---- hoping for SVR --- there is a list of common Hepatitis Acronyms listed to the right side here -----> and maybe scroll a little --- click on that link.
Read through the forum - get to know folks...
It's great to see someone with such a positive swing on things...
And yeah - we all have questions --- ask them...
Specifically --- what happens? Hmmmm who knows...
But --- you can ask specific questions... and we'll help where we can.
Much LUCK!
Meki
What you're saying is that you're in UND status ---- hoping for SVR --- there is a list of common Hepatitis Acronyms listed to the right side here -----> and maybe scroll a little --- click on that link.
Read through the forum - get to know folks...
It's great to see someone with such a positive swing on things...
And yeah - we all have questions --- ask them...
Specifically --- what happens? Hmmmm who knows...
But --- you can ask specific questions... and we'll help where we can.
Much LUCK!
Meki
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