Well, today I finally got back into the gym and I wanted to die. I did 1/2 of my usual cardio and about 1/3 of the weights I usually do. Nausea and body aches hit and so in calling it a night, I weighed myself and am down to 155lbs. Yikes! That's low! I know I've lost muscle mass and therefore, feel unattractive. I have this scrawny body with love handles and no muscles. Sexy! ;)
I've also noticed that virtually every meal I eat, I find a hair in it. Don't worry, it's mine. I don't wash my hair every day anymore to hopefully keep it for a while but hair loss is inevitable. From what I understand, after shot #2, hair stops growing and then several months after that it begins to fall out. My hair is still growing which is exciting. I'm still going to buzz it once it starts to really shed, though.
All in all, my sx (side effects) from this bloody hepatitis c treatment are manageable. Many people are much worse off than I am and I recognize that I am a very lucky person where this is concerned. Many people can barely get out of bed and just hurt every day, always tired, etc. Don't get me wrong, this is no picnic but it's doable. I'll be extremely happy when it's done and I know that as long as it doesn't kill me (which I'm refusing to let it kill me), it will make me stronger. When I am so tired that I want to go to bed at 7pm, I get up and walk around my little apartment. When I hurt (oh yes, those joints are still yelling at me), I get up and walk. There's not much I can do about the 'brain fog' though. Wondering what that is? I've always had a bad memory but my treatment for hepatitis c has helped me forget more things more frequently. Sometimes there's confusion or sometimes I forget something that happened yesterday. I asked my friend Tina if she'd seen the movie 'NINE' with Penelope Cruz and Nicole Kidman and she told me that she and I saw it the night before. Oops! Oh yeah! We did!! Or sometimes I'll forget where I'm going while I'm driving and just automatically drive to a familiar location like a zombie, thinking that that's my destination. Then I get there and wonder what I'm doing there and realize that it's the wrong destination. That's not as frequent as the forgetting things but still annoying when I take a detour to make a stop somewhere and then forget to stop (i.e. the post office to mail my Netflix).
And that brings us to, it's New Years Eve!!! I'm heading out with two friends tonight to a nightclub here in West Hollywood. No, I don't drink, but I still get tanked up on Sugar-free RedBull and dance until my body tells me I can't dance anymore. Haven't gone dancing in a while so this should be interesting. I hope I still have it!
Everyone please have a wonderful and safe New Year and I truly hope 2010 brings you all much health, love, and prosperity!
Adam
Thursday, December 31, 2009
Sunday, December 13, 2009
1st shot done
Friday at 10:30am PST was my first shot of interferon. I went to work and around 1pm I started to get a slight headache. By 2 I had chills and a slight fever. By 3 I was headed home to bed. It was one of the worst nights of my life.
The shot itself was easier than I anticipated. You swab the area with alcohol, let it dry, clip the needle into the syringe, pinch some fat on your stomach (I admit to having some) and then push the short needle into the gripped fat/skin. It goes in about 1.5" so it's not bad. You pull on the syringe a tiny bit to ensure no blood enters meaning you hit an artery and when all clear, you push the interferon into your body.
If you've ever been so hung over that all you can think of is that you want to die, and really mean it, that's where I was minus the fun alcohol-infused night before. I honestly wanted to die. I started thinking of everyone I'd be leaving behind and for a couple minutes thought I was in fact dying and I was amazingly prepared.
All night I had a fever, body aches, chills, joint pain, nausea, headache. I kept getting up to use the bathroom because I had had so much water throughout the day. It took everything I had to get to the bathroom but I pushed through.
My alarm went off at 7:15am because I need to take my ribas at 7:15am and 7:15pm (give or take a few minutes) and I woke up feeling on top of the world with an extra bounce in my step. By 1pm the headache and fever resurfaced which makes me wonder if it's the ribavirin giving me sides and not the interferon. I was exhausted from shopping for about an hour which is unusual as I'm typically quite active. Having gone to a holiday party tonight, I took my ribas at 7:15pm and by 10pm the headache and joint pain began. I sit at home, some joint pain and a slight headache, but alas, I will go to bed and see what tomorrow brings at 7:15am.
The shot itself was easier than I anticipated. You swab the area with alcohol, let it dry, clip the needle into the syringe, pinch some fat on your stomach (I admit to having some) and then push the short needle into the gripped fat/skin. It goes in about 1.5" so it's not bad. You pull on the syringe a tiny bit to ensure no blood enters meaning you hit an artery and when all clear, you push the interferon into your body.
If you've ever been so hung over that all you can think of is that you want to die, and really mean it, that's where I was minus the fun alcohol-infused night before. I honestly wanted to die. I started thinking of everyone I'd be leaving behind and for a couple minutes thought I was in fact dying and I was amazingly prepared.
All night I had a fever, body aches, chills, joint pain, nausea, headache. I kept getting up to use the bathroom because I had had so much water throughout the day. It took everything I had to get to the bathroom but I pushed through.
My alarm went off at 7:15am because I need to take my ribas at 7:15am and 7:15pm (give or take a few minutes) and I woke up feeling on top of the world with an extra bounce in my step. By 1pm the headache and fever resurfaced which makes me wonder if it's the ribavirin giving me sides and not the interferon. I was exhausted from shopping for about an hour which is unusual as I'm typically quite active. Having gone to a holiday party tonight, I took my ribas at 7:15pm and by 10pm the headache and joint pain began. I sit at home, some joint pain and a slight headache, but alas, I will go to bed and see what tomorrow brings at 7:15am.
Tuesday, December 8, 2009
Drugland
Well, after initially denying my interferon, my insurance company has agreed to pay for both medications. This is quite exciting as without my insurance, my interferon alone would be about $2400 per month plus the cost of my ribavirin. So, the 4 syringes are sitting in my refrigerator and on Friday AM, I meet with someone to show me how to self-administer.
Side effects typically take a day or so to appear and hopefully I'm in the lucky 12% to not experience sides because they're hellishly nasty. I've got a bunch of vacation days through my company that I need to take (before losing them in 2010) and so I'll take a couple days off while I see how my body reacts. It will be a good time for reading and to get that ever-growing Netflix queue down.
Come Friday I'll post a blog to say how the shot went and I'm sure I'll have some emotions running through me. Stay tuned!
Adam
Side effects typically take a day or so to appear and hopefully I'm in the lucky 12% to not experience sides because they're hellishly nasty. I've got a bunch of vacation days through my company that I need to take (before losing them in 2010) and so I'll take a couple days off while I see how my body reacts. It will be a good time for reading and to get that ever-growing Netflix queue down.
Come Friday I'll post a blog to say how the shot went and I'm sure I'll have some emotions running through me. Stay tuned!
Adam
Tuesday, November 17, 2009
East vs. West
EAST
Every Tuesday and Thursday at 2:30pm is acupuncture. I go to have my liver and immune system strengthened by having needles placed into key areas of my body. She knows I have been ready to start my western treatment and she is not too happy about it although she did say she would not interfere with it and would be happy to use acupuncture in conjunction with my western meds. Again today, she asked if I was certain I wanted to do this (western meds) because it will be toxic to my body and she is more about natural health (as a bottle of Robitussin sat on her desk). Clearly, she is hoping I choose not to do the interferon/ribavirin combo.
WEST
I met my new doc today who will be the one to prescribe and show me how to self-administer the interferon which I am being told will be pegylated interferon which will stay in my blood longer than interferon. He's very no-nonsense which I like and he asked about anything I may be doing to stay healthy and, as most westernerns would, he scoffed at the idea of acupuncture. He agreed it was very good for pain but knows of no cases where it has assisted in the treatment of hepatitis c and he feels as though I should stop and save my money.
He asked if I was ready to begin treatment and, taking a deep breath, I said Yes, I was ready (knowing it'd be the worst 48 weeks of my entire life, but in the grand scheme of things, what is 48 weeks of my life?). He then told me that in about two years, a protease inhibitor will have been approved and released which will increase my chances of beating this nasty virus from 52% to approximately 85%. Do I wait the two years and learn to live with the dragon (the hep term for the virus) or do I slay it now to be done with it? Side effects would be the same but the journey of it would be far more reassuring. Cirrhosis is very unlikely to set in within two years and liver cancer has about the same chance of developing. I could put myself through hell treatment now and hope it works and maybe have to do it all over again in two years dealing with the same side effects OR I could wait the two years and hope my body remains healthy until the protease inhibitor is released.
Being young (again, his words, not mine) and otherwise healthy and fit, but having the most difficult genotype, he is ready to support me in either decision. He drew more blood and I am to call him within the next two weeks for those numbers and with my decision.
Every Tuesday and Thursday at 2:30pm is acupuncture. I go to have my liver and immune system strengthened by having needles placed into key areas of my body. She knows I have been ready to start my western treatment and she is not too happy about it although she did say she would not interfere with it and would be happy to use acupuncture in conjunction with my western meds. Again today, she asked if I was certain I wanted to do this (western meds) because it will be toxic to my body and she is more about natural health (as a bottle of Robitussin sat on her desk). Clearly, she is hoping I choose not to do the interferon/ribavirin combo.
WEST
I met my new doc today who will be the one to prescribe and show me how to self-administer the interferon which I am being told will be pegylated interferon which will stay in my blood longer than interferon. He's very no-nonsense which I like and he asked about anything I may be doing to stay healthy and, as most westernerns would, he scoffed at the idea of acupuncture. He agreed it was very good for pain but knows of no cases where it has assisted in the treatment of hepatitis c and he feels as though I should stop and save my money.
He asked if I was ready to begin treatment and, taking a deep breath, I said Yes, I was ready (knowing it'd be the worst 48 weeks of my entire life, but in the grand scheme of things, what is 48 weeks of my life?). He then told me that in about two years, a protease inhibitor will have been approved and released which will increase my chances of beating this nasty virus from 52% to approximately 85%. Do I wait the two years and learn to live with the dragon (the hep term for the virus) or do I slay it now to be done with it? Side effects would be the same but the journey of it would be far more reassuring. Cirrhosis is very unlikely to set in within two years and liver cancer has about the same chance of developing. I could put myself through hell treatment now and hope it works and maybe have to do it all over again in two years dealing with the same side effects OR I could wait the two years and hope my body remains healthy until the protease inhibitor is released.
Being young (again, his words, not mine) and otherwise healthy and fit, but having the most difficult genotype, he is ready to support me in either decision. He drew more blood and I am to call him within the next two weeks for those numbers and with my decision.
Thursday, November 12, 2009
Liver Biopsy Results
After 16 days of waiting, the results came today to show that I do not have cirrhosis of the liver nor do I have liver cancer. Whew! I've been referred to a hepatologist and I see him on Tuesday of next week.
The next step is seeing this new doc, have him go over all of my test results, and decide with me on treatment. 99.999% sure it will be Interferon & Ribaviran combo for 48 weeks. It's a tough treatment but the idea of being hep c free is most inspiring.
I realize that although having this nasty virus sucks, I am so fortunate to have the doctors that I do. My friends on the UK forum that I participate in have to wait weeks before they can see a specialist. I make same day appointments with my doc and this specialist appointment is 5 days away and that's only because he only works in that office on Tuesday so I had to wait until he was there. It's something I would have taken for granted.
As far as the eastern practices I've incorporated, acupuncture went well today and still doing my research on a Reiki Master to teach me self-reiki. Meditation has been extremely helpful in calming the nerves and finding inner-peace.
I hope this finds everyone well.
Adam
The next step is seeing this new doc, have him go over all of my test results, and decide with me on treatment. 99.999% sure it will be Interferon & Ribaviran combo for 48 weeks. It's a tough treatment but the idea of being hep c free is most inspiring.
I realize that although having this nasty virus sucks, I am so fortunate to have the doctors that I do. My friends on the UK forum that I participate in have to wait weeks before they can see a specialist. I make same day appointments with my doc and this specialist appointment is 5 days away and that's only because he only works in that office on Tuesday so I had to wait until he was there. It's something I would have taken for granted.
As far as the eastern practices I've incorporated, acupuncture went well today and still doing my research on a Reiki Master to teach me self-reiki. Meditation has been extremely helpful in calming the nerves and finding inner-peace.
I hope this finds everyone well.
Adam
Tuesday, November 10, 2009
Temper, temper
So, I seem to be mad at the world these days. People go around as the world turns and I'm dealing with a dragon (FYI, dragon is hepper terminology for the virus) and these people are going about their business. Bitter, party of 1 right here. Or, they are grumpy or complaining about the stupidest things and I just want to say "You think you've got it tough right now? Let me tell you what I'm dealing with." But then I realize that that would be like throwing a pity-party and that's not what I want. I am trying to stay positive and receive positive energy from everyone. It's just that when people complain about things I consider trivial, I just want to punch them.
Severe irritability is a side effect of hepatitis c (and also of the treatment) but I didn't feel this way until AFTER I was diagnosed so I'm certain it's just a part of the grievance process. Apparently there are 5 stages and they are the same as losing someone because in essence, you're losing yourself to a virus that wants to kill you. Want to know what they are? They will come in handy when you're dealing with anything severe:
1. denial and isolation (oh yes, isolation)
2. anger (oh yeah, no stranger to that)
3. bargaining (like I'm looking to buy a new Aston Martin on my salary)
4. depression (well yeah)
5. acceptance (I thought I hit this but now I'm not certain)
Today is Tuesday and this week so far has been mostly anger. A little depression but not as much as the anger. Those goddamn sons of bitches complaining about trivial things! =D
Dr. Kang (my acupuncturist) treated not only my liver and immune system today, but also some other points for my anger. Metaphysically speaking, the liver and anger go hand in hand. Dr. Kang informed me of that as well as someone on a forum I belong to. No wonder I want to punch so many people!
Severe irritability is a side effect of hepatitis c (and also of the treatment) but I didn't feel this way until AFTER I was diagnosed so I'm certain it's just a part of the grievance process. Apparently there are 5 stages and they are the same as losing someone because in essence, you're losing yourself to a virus that wants to kill you. Want to know what they are? They will come in handy when you're dealing with anything severe:
1. denial and isolation (oh yes, isolation)
2. anger (oh yeah, no stranger to that)
3. bargaining (like I'm looking to buy a new Aston Martin on my salary)
4. depression (well yeah)
5. acceptance (I thought I hit this but now I'm not certain)
Today is Tuesday and this week so far has been mostly anger. A little depression but not as much as the anger. Those goddamn sons of bitches complaining about trivial things! =D
Dr. Kang (my acupuncturist) treated not only my liver and immune system today, but also some other points for my anger. Metaphysically speaking, the liver and anger go hand in hand. Dr. Kang informed me of that as well as someone on a forum I belong to. No wonder I want to punch so many people!
Sunday, November 8, 2009
About me
So, let's see. You know I have hepatitis c and don't know where I got it from. My genotype is 1a which is the most common in the US and also the most difficult one to treat. Difficult in that after my 48 weeks of hell treatment, I have a 52% chance of eradicating the virus. Why bother? I'll tell you:
The virus replicates within us. The longer one has it, the higher the chance for cirrhosis of the liver and liver cancer. The virus is measured in replications. 8 million replications is really bad. 0 is what we want. I have 140,000 which is better than in the millions. The difficulty in the genotype is not in my favor. My replications is in my favor along with being relatively young (hey, that's my doc speaking, not me) and not overweight although a friend or two would argue that I have a muffin top. Regardless, I'm in a good position to beat it. I have health insurance through my job and I have an awesome doctor. And since my diagnosis I have stopped drinking (seeing as how my liver is under attack, any drinking/drugs are a terrible thing for my body) and I have continued to exercise regularly as this helps when it comes time to treat.
Why would anyone choose not to go for treatment? Here's why. Have you ever had the flu? I'm not talking a bad cold that people get all babyish about. I mean a real flu. Fever, body aches, joint aches, fatigue, chills, etc. If you've had one, take EVERY negative thing about it and add to it: nausea, loss of appetite, some hair loss, jaundice (body and whites of eyes turn yellowish), brain fog, severe irritability, headache, confusion, difficulty concentrating, insomnia, itching in places where the skin is fine, depression, diarrhea, etc. It's not pleasant. So, in deciding to treat it, there are a lot of options to weigh. I live alone which is going to be a problem when I begin treatment. If I need something I can't send someone to get it. If I'm feeling sick, I have to get up myself to get whatever will make me feel better.
To treat or not to treat is a huge decision for those of us with this crazy virus. Some people, like myself, have opted to incorporate eastern medicine (I prefer that over 'alternative medicine') to help ease the side effects. I have been going to acupuncture for one month and will continue to go. I also will be learning reiki to administer self-reiki.
So what is this treatment? I'm waiting for my liver biopsy to come back to confirm the treatment for me, but if it comes back as my doc and I suspect then I am doing the Interferon and Ribavirin combo. Interferon is a shot I will give myself once a week and the Ribavirin is 2-4 pills per day. The day I take the Interferon I will be fine and the side effects usually start the next day. There are a very small number of people who complete treatment with zero side effects and they sure are lucky. I'm hoping to be in that percentage.
The virus replicates within us. The longer one has it, the higher the chance for cirrhosis of the liver and liver cancer. The virus is measured in replications. 8 million replications is really bad. 0 is what we want. I have 140,000 which is better than in the millions. The difficulty in the genotype is not in my favor. My replications is in my favor along with being relatively young (hey, that's my doc speaking, not me) and not overweight although a friend or two would argue that I have a muffin top. Regardless, I'm in a good position to beat it. I have health insurance through my job and I have an awesome doctor. And since my diagnosis I have stopped drinking (seeing as how my liver is under attack, any drinking/drugs are a terrible thing for my body) and I have continued to exercise regularly as this helps when it comes time to treat.
Why would anyone choose not to go for treatment? Here's why. Have you ever had the flu? I'm not talking a bad cold that people get all babyish about. I mean a real flu. Fever, body aches, joint aches, fatigue, chills, etc. If you've had one, take EVERY negative thing about it and add to it: nausea, loss of appetite, some hair loss, jaundice (body and whites of eyes turn yellowish), brain fog, severe irritability, headache, confusion, difficulty concentrating, insomnia, itching in places where the skin is fine, depression, diarrhea, etc. It's not pleasant. So, in deciding to treat it, there are a lot of options to weigh. I live alone which is going to be a problem when I begin treatment. If I need something I can't send someone to get it. If I'm feeling sick, I have to get up myself to get whatever will make me feel better.
To treat or not to treat is a huge decision for those of us with this crazy virus. Some people, like myself, have opted to incorporate eastern medicine (I prefer that over 'alternative medicine') to help ease the side effects. I have been going to acupuncture for one month and will continue to go. I also will be learning reiki to administer self-reiki.
So what is this treatment? I'm waiting for my liver biopsy to come back to confirm the treatment for me, but if it comes back as my doc and I suspect then I am doing the Interferon and Ribavirin combo. Interferon is a shot I will give myself once a week and the Ribavirin is 2-4 pills per day. The day I take the Interferon I will be fine and the side effects usually start the next day. There are a very small number of people who complete treatment with zero side effects and they sure are lucky. I'm hoping to be in that percentage.
What thought first comes to mind?
When I say hepatitis c, what comes to mind? It sounds pretty bad, right? Some people will think you ate food handled by a chef who didn't wash his hands after using the restroom. Some people will think it's an STD. Some people have no idea as you've never needed to know.
Well, whether you want to believe this or not, you DO need to know because millions of people worldwide have hepatitis c and most people do not even know it.
Hepatitis is an inflammation of the liver. There are several types of hepatitis but I am focusing on hepatitis c. Within the land of hepatitis c there are subcategories called genotypes. Here in the United States, genotype 1a is the most common. What does this mean? It means that your liver is under attack by this tricky virus that hides and changes to withstand medicines. Many people live 20+ years with hepatitis c and don't know they have it because there are not always symptoms. No symptoms does not mean there is no damage happening in your body. Left untreated, hepatitis c can lead to cirrhosis of the liver and or liver cancer. There are more infections of hepatitis c than HIV and yet so little education is done.
How is it spread? It is spread via blood. Blood to blood contamination. If you've had a blood transfusion in the '80's, you're at risk. If you've ever used IV drugs (and shared a needle) even just once, you're at risk. If you've had a surgery in a country where sterilization is not a priority, you're at risk. Have a tattoo or piercing? At risk. If you've ever been to a dentist, you're at risk. A dentist even here in the US where we have strict sterilization laws, it happens. I am 31 years old, I have never had a blood transfusion, I have never used IV drugs, I have never had a surgery in another country. Yet I have hep c. Where did I get it? I don't know. Many people don't know. It could have been a visit to a dentist. It could have been an oral surgery I had. A piercing from 6 years ago or a tattoo from 13 years ago. I may never know how I got it.
The next time you are at your doctor, ask to get tested. Even if you have a series of STD tests to make sure you are healthy, hep c is not included as less than 2% of people known infected contracted it from a partner. It's extremely difficult to contract sexually unless there is blood involved. If your doctor says you needn't worry, let them know that a friend of yours who is extremely low risk found out he had hep c and doesn't know where he got it from and you just want piece of mind.
Well, whether you want to believe this or not, you DO need to know because millions of people worldwide have hepatitis c and most people do not even know it.
Hepatitis is an inflammation of the liver. There are several types of hepatitis but I am focusing on hepatitis c. Within the land of hepatitis c there are subcategories called genotypes. Here in the United States, genotype 1a is the most common. What does this mean? It means that your liver is under attack by this tricky virus that hides and changes to withstand medicines. Many people live 20+ years with hepatitis c and don't know they have it because there are not always symptoms. No symptoms does not mean there is no damage happening in your body. Left untreated, hepatitis c can lead to cirrhosis of the liver and or liver cancer. There are more infections of hepatitis c than HIV and yet so little education is done.
How is it spread? It is spread via blood. Blood to blood contamination. If you've had a blood transfusion in the '80's, you're at risk. If you've ever used IV drugs (and shared a needle) even just once, you're at risk. If you've had a surgery in a country where sterilization is not a priority, you're at risk. Have a tattoo or piercing? At risk. If you've ever been to a dentist, you're at risk. A dentist even here in the US where we have strict sterilization laws, it happens. I am 31 years old, I have never had a blood transfusion, I have never used IV drugs, I have never had a surgery in another country. Yet I have hep c. Where did I get it? I don't know. Many people don't know. It could have been a visit to a dentist. It could have been an oral surgery I had. A piercing from 6 years ago or a tattoo from 13 years ago. I may never know how I got it.
The next time you are at your doctor, ask to get tested. Even if you have a series of STD tests to make sure you are healthy, hep c is not included as less than 2% of people known infected contracted it from a partner. It's extremely difficult to contract sexually unless there is blood involved. If your doctor says you needn't worry, let them know that a friend of yours who is extremely low risk found out he had hep c and doesn't know where he got it from and you just want piece of mind.
Subscribe to:
Posts (Atom)