It's 7:00 in the morning and I am dead tired. I can barely type and my motivation for making this entry is very low indeed. Nevertheless I want to chronicle my experiences during the treatment of my Hepatitis C treatment.
It is Sunday and I am now entering into week three of what will probably be 48 weeks of treatment. I have already completed week one and two of the treatment. It did not occur to me to write about these until this morning. But I can catch up anyway.
The treatment has hitherto consisted of a weekly injection of Interferon (PegIntron) and daily doses of Ribavirin. I take the Ribavirin twice a day: once in the morning and once in the evening. The injection I take Sunday evenings. A new drug, Victrelis, will be introduced into the mix on or after week four (I'm not yet sure). I'll be taking those capsules three times a day every eight hours.
Timing is everything with the Victrelis. It must be taken in a rigid time frame and with a meal or light snack. This doesn't fit in well with my lifestyle. I've decided to take it at 6:00PM when I usually sit down to dinner. I'll set the alarm to wake me at 2:00AM when I'll take the second dose. I haven't quite figured out what I'm going to do about a light snack at that hour yet but something will come to me I guess. I'll take the third and final daily dose at 10:00AM which works out well with my schedule.
All of these drugs, the PegIntron, Ribavirin and Victrelis list the same basic side effects. Fatigue, nausea and irritability. I'm feeling fatigue but that could also be due to the HCV itself or because I smoke like a chimney. I've also had a persistent cold which hasn't helped. But, again, maybe the cold is also due to general fatigue and smoking. I don't know.
So far I have not felt nauseous which is a blessing. But I am still waiting to see what happens. It's too early in the treatment to experience all of the side effects. I certainly hope that I don't find myself throwing up all the time, especially dinner. I need the 500 calories I usually consume at dinner to make my psychiatric medication work. Losing my dinner shortly after eating it would also affect the usefulness of the Victrelis. I'll need some willpower during those times.
My wife is an absolute angel. She has taken on the burden of seeing to it that I take my medication and she keeps almost daily notes of what's going on in my life. She reads the dense drug descriptions and makes notes of things I need to be aware of. I must confess I am very lackadaisical when it comes to learning about the drugs I am taking. She also monitors my moods carefully and checks in regularly to see where my head is at.
And knowing where my head is at is very important. I am beginning to feel irritable. Last night I played through a scenario in my mind in which I confronted the ground's manager here. The woman is an absolute mean-spirited witch and I imagined myself screaming at her in a rage about the impending installation of our satellite dish. The fantasy was so intense it left me shaking and uncommunicative. My wife noticed this and asked me what was on my mind. I gruffly brushed her off despite her loving intentions. She took this in stride and sat with me quietly while I tried to unwind by listening to music.
This has been the only manifestation of my irritability so far. I have not directed it towards my wife yet but I'm sure that will ultimately happen. I just hope I'm not hateful. I don't want to hurt her. Despite her awareness that this is a side effect of the drugs I take a person can feel rage directed towards them. I love her and I don't want to hurt her.
I've spoken about fatigue, nausea and irritability. But foremost in my mind are the side effects of PegIntron that are not listed in the written material that accompanies it. Before I delve into these there's a strange little story that goes along with administration of PegIntron.
The drug is delivered in a pen-like device. The pen is filled with the drug and a circular dial at one end is used to select the dose. My dose is the maximum dial setting (typically). The pens are kept refrigerated. A pen is taken out and allowed to reach room temperature which usually takes about 1/2 hour. There's then a procedure for mixing the drug in the pen which must be followed precisely. It involves pressing very hard on the pen in order to mix the drug. Only after this is done can the dosing dial be snapped out and dialed to the correct dose. Then the needle is attached and the injection is made.
We screwed this up this first week. Apparently one must press really hard on the pen in order to mix the drug thoroughly. The dial won't operate if this is not done. My wife, who has assumed responsibility for preparation of the pen, did not know this and thus did not press hard enough. Neither of us were able to get the damn dial to work afterwards. We tried a pliers and a screwdriver to get the dosing dial to pop out. We finally concluded that there was something wrong with the pen and discarded it. We took out another pen from the refrigerator and tried to get that to work. I guess it was just luck that the pen was pressed down hard enough to barely get the dosing dial out. I made the injection but I fear it was only half of the Interferon the pen contained.
After this debacle my wife called the on-duty nurse at Merck (the manufacturer of the pens) the following day to report the difficulty with the pens. The nurse patiently walked her through the process and it was then we discovered the mistake we had made. We had not pushed hard enough on the pen to mix the drug within. After this my wife also quizzed the nurse about side effects. The nurse repeated what we already knew about fatigue, nausea, irritability and in the case of Interferon, depression. My wife mentioned that I was bipolar (but omitted the information about my psychosis and panic/anxiety disorders, thank God). The nurse cheerfully mentioned that I should watch out for depression and the likelihood of suicide which, "Can lead to death." In the end we signed up for some sort of educational program and promised to call the on-duty nurse the following Sunday to walk us through the process of using the pen. We did this and the injection last Sunday went smoothly.
The physical side-effects of the Interferon were horrific. My heptalogist had recommended that I take the injection shortly before bedtime along with two Advils to ameliorate its side effects. I'm not sure about the efficacy of the Advil but I can sure see why one would want to take the injection before bedtime. I took it at around 6:30PM. I was doubled up with pain and nausea. I cannot imagine how two Advil could have possibly helped. I decided to go to bed shortly thereafter and woke up at three the following morning. Obviously this won't do. From now on I'm taking the shot at around 10:00PM because I usually go to sleep at 10:30 or 11:00. I'm going to liquefy one or two Vicodin tablets and take them at 9:00PM beforehand to address the pain. I hope this regimen works. I'll find out tonight.
Psychologically I experienced a bit more than depression. The Interferon made me unusually emotional. I found myself crying twice the following day for no discernible reason. I'm not sure I felt depressed. But I did spend the following Tuesday in bed watching daytime TV. Granted I was recovering from a cold but more may have been at play then, perhaps depression.
Of course I am also at risk for aggravation of my particular mental disorders. So far I have not felt anything that suggests that I'm going off my rocker. Or rather no one else has noticed. I won't notice myself. Although I do have the beginning of a fantasy.
I see myself laying out razor blades in the shape of a cross on the glass that covers our dining room table. I see myself wondering where in the cross the blood should drip. I hear my beautiful synthesizer music in the background. I hear a pulsing bass rhythm that underlies the floating music of the synthesizer and vocals. This vision is beginning to become clearer in my mind. It is beckoning to me. I begin to see it ever more clearly and feel the emotion to follow it becoming more powerful. I know it is the start of a psychotic break but that intellectual explanation is disagreeable. I want to go there already. My contract with myself to avoid such things seems silly to me now. I have never been able to explain the beauty of these visions to others. Instead they get their bowels in knot. Buzz kills.
No manic episodes on the other hand.
I guess I survived week one and two. Week three starts today.
It is Sunday and I am now entering into week three of what will probably be 48 weeks of treatment. I have already completed week one and two of the treatment. It did not occur to me to write about these until this morning. But I can catch up anyway.
The treatment has hitherto consisted of a weekly injection of Interferon (PegIntron) and daily doses of Ribavirin. I take the Ribavirin twice a day: once in the morning and once in the evening. The injection I take Sunday evenings. A new drug, Victrelis, will be introduced into the mix on or after week four (I'm not yet sure). I'll be taking those capsules three times a day every eight hours.
Timing is everything with the Victrelis. It must be taken in a rigid time frame and with a meal or light snack. This doesn't fit in well with my lifestyle. I've decided to take it at 6:00PM when I usually sit down to dinner. I'll set the alarm to wake me at 2:00AM when I'll take the second dose. I haven't quite figured out what I'm going to do about a light snack at that hour yet but something will come to me I guess. I'll take the third and final daily dose at 10:00AM which works out well with my schedule.
All of these drugs, the PegIntron, Ribavirin and Victrelis list the same basic side effects. Fatigue, nausea and irritability. I'm feeling fatigue but that could also be due to the HCV itself or because I smoke like a chimney. I've also had a persistent cold which hasn't helped. But, again, maybe the cold is also due to general fatigue and smoking. I don't know.
So far I have not felt nauseous which is a blessing. But I am still waiting to see what happens. It's too early in the treatment to experience all of the side effects. I certainly hope that I don't find myself throwing up all the time, especially dinner. I need the 500 calories I usually consume at dinner to make my psychiatric medication work. Losing my dinner shortly after eating it would also affect the usefulness of the Victrelis. I'll need some willpower during those times.
My wife is an absolute angel. She has taken on the burden of seeing to it that I take my medication and she keeps almost daily notes of what's going on in my life. She reads the dense drug descriptions and makes notes of things I need to be aware of. I must confess I am very lackadaisical when it comes to learning about the drugs I am taking. She also monitors my moods carefully and checks in regularly to see where my head is at.
And knowing where my head is at is very important. I am beginning to feel irritable. Last night I played through a scenario in my mind in which I confronted the ground's manager here. The woman is an absolute mean-spirited witch and I imagined myself screaming at her in a rage about the impending installation of our satellite dish. The fantasy was so intense it left me shaking and uncommunicative. My wife noticed this and asked me what was on my mind. I gruffly brushed her off despite her loving intentions. She took this in stride and sat with me quietly while I tried to unwind by listening to music.
This has been the only manifestation of my irritability so far. I have not directed it towards my wife yet but I'm sure that will ultimately happen. I just hope I'm not hateful. I don't want to hurt her. Despite her awareness that this is a side effect of the drugs I take a person can feel rage directed towards them. I love her and I don't want to hurt her.
I've spoken about fatigue, nausea and irritability. But foremost in my mind are the side effects of PegIntron that are not listed in the written material that accompanies it. Before I delve into these there's a strange little story that goes along with administration of PegIntron.
The drug is delivered in a pen-like device. The pen is filled with the drug and a circular dial at one end is used to select the dose. My dose is the maximum dial setting (typically). The pens are kept refrigerated. A pen is taken out and allowed to reach room temperature which usually takes about 1/2 hour. There's then a procedure for mixing the drug in the pen which must be followed precisely. It involves pressing very hard on the pen in order to mix the drug. Only after this is done can the dosing dial be snapped out and dialed to the correct dose. Then the needle is attached and the injection is made.
We screwed this up this first week. Apparently one must press really hard on the pen in order to mix the drug thoroughly. The dial won't operate if this is not done. My wife, who has assumed responsibility for preparation of the pen, did not know this and thus did not press hard enough. Neither of us were able to get the damn dial to work afterwards. We tried a pliers and a screwdriver to get the dosing dial to pop out. We finally concluded that there was something wrong with the pen and discarded it. We took out another pen from the refrigerator and tried to get that to work. I guess it was just luck that the pen was pressed down hard enough to barely get the dosing dial out. I made the injection but I fear it was only half of the Interferon the pen contained.
After this debacle my wife called the on-duty nurse at Merck (the manufacturer of the pens) the following day to report the difficulty with the pens. The nurse patiently walked her through the process and it was then we discovered the mistake we had made. We had not pushed hard enough on the pen to mix the drug within. After this my wife also quizzed the nurse about side effects. The nurse repeated what we already knew about fatigue, nausea, irritability and in the case of Interferon, depression. My wife mentioned that I was bipolar (but omitted the information about my psychosis and panic/anxiety disorders, thank God). The nurse cheerfully mentioned that I should watch out for depression and the likelihood of suicide which, "Can lead to death." In the end we signed up for some sort of educational program and promised to call the on-duty nurse the following Sunday to walk us through the process of using the pen. We did this and the injection last Sunday went smoothly.
The physical side-effects of the Interferon were horrific. My heptalogist had recommended that I take the injection shortly before bedtime along with two Advils to ameliorate its side effects. I'm not sure about the efficacy of the Advil but I can sure see why one would want to take the injection before bedtime. I took it at around 6:30PM. I was doubled up with pain and nausea. I cannot imagine how two Advil could have possibly helped. I decided to go to bed shortly thereafter and woke up at three the following morning. Obviously this won't do. From now on I'm taking the shot at around 10:00PM because I usually go to sleep at 10:30 or 11:00. I'm going to liquefy one or two Vicodin tablets and take them at 9:00PM beforehand to address the pain. I hope this regimen works. I'll find out tonight.
Psychologically I experienced a bit more than depression. The Interferon made me unusually emotional. I found myself crying twice the following day for no discernible reason. I'm not sure I felt depressed. But I did spend the following Tuesday in bed watching daytime TV. Granted I was recovering from a cold but more may have been at play then, perhaps depression.
Of course I am also at risk for aggravation of my particular mental disorders. So far I have not felt anything that suggests that I'm going off my rocker. Or rather no one else has noticed. I won't notice myself. Although I do have the beginning of a fantasy.
I see myself laying out razor blades in the shape of a cross on the glass that covers our dining room table. I see myself wondering where in the cross the blood should drip. I hear my beautiful synthesizer music in the background. I hear a pulsing bass rhythm that underlies the floating music of the synthesizer and vocals. This vision is beginning to become clearer in my mind. It is beckoning to me. I begin to see it ever more clearly and feel the emotion to follow it becoming more powerful. I know it is the start of a psychotic break but that intellectual explanation is disagreeable. I want to go there already. My contract with myself to avoid such things seems silly to me now. I have never been able to explain the beauty of these visions to others. Instead they get their bowels in knot. Buzz kills.
No manic episodes on the other hand.
I guess I survived week one and two. Week three starts today.
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