It's 4:30AM on a Friday morning (2/17/12) and strangely enough I am wide awake (more or less). I'm still a little wobbly as I am when I wake up in the middle of the night to use the bathroom. I toyed with the idea of simply going back to bed but decided to stay up anyway. So here I am.
I am now in the fourteenth week of my Hepatitis C treatment. Administering the medicine has become pretty routine. I rarely miss a Victrelis dose. I had to double up on Wednesday this week on the Procrit and Neupogin injections because I missed the former on Tuesday. Taking two injections back-to-back was no fun. I need to be more cognizant of my injection schedule.
I had a transfusion a couple of weeks ago and it made a huge difference in my energy level. I was very anemic beforehand, pale and unable to do anything at all other than lie in bed. The transfusion process takes about five and one half hours for two units. I listen to my iPod throughout. There is nothing else to do. The hospital provides a television but I haven't yet felt the need to watch it. Maybe I will watch it the next time I get a transfusion (if that happens.)
The Procrit is supposed to address my red blood cell count and hence my anemia. But the dose I'm taking isn't doing that. My wife is working with my heptologist's office to increase my dose. I'm not sure where in the process that is. But I expect to get a higher dose by next week. I'm not sure if it will happen as a larger single injection of Procrit or two or more lower doses. I hope it's the former. The skin covering my body fat in my belly is already ravaged by all of the injections I take.
The side effects of the medication I take are becoming more "routine," so to speak. My energy level is about four to five hours. For example I can paint for about three to four hours before I begin to shake with weariness. I have learned to recognize this sign and stop and go to bed. One day I did not. I pushed myself to finish what I was doing. I wasn't able to do this anyway because my hands began to shake. By the time I got to bed my whole body was shaking so violently I could barely get the covers over me. This lasted for about an hour. I learned my lesson from that incident. As much as I hate it it, I am never going to ignore the warning sign of weariness again.
I still shake a little bit when I go to bed and I spike a mild fever. It's uncomfortable and frustrating. I am in pain with flu-like symptoms. I typically take four Ibuprofen pills to get this under control and they help somewhat. If I am in a lot of pain (like I was during that incident mentioned above) I will take a Vicodin. I don't like doing that. The Vicodin is a narcotic and keeps me up at night, unable to fall asleep despite my nighttime medication. But it sure does kill the pain for the most part. I refuse to take more than one however.
I am energetic in the morning. I am able to shave and shower, clean up the kitchen, etc. After my simple chores I typically paint. I think I actually have close to eight hours of energy before I run out of steam after about three hours of painting. Writing in this diary at what is now 5:00AM probably means I will spend the day in bed after doing my chores. We'll see. I'm not sure I am going to have the energy to paint, unfortunately.
I am now on the third color of my painting. I am pleased with the way the painting is coming along. Alas, I mixed it with too much water so it goes on too thinly. My wife showed me a technique for drying out the paint and thereby thickening it. I place a small amount of the paint on a plate and let it dry while mixing it. I can then use the paint from the plate before it becomes too dry. It's an onerous process but at least allows me to proceed.
I hate being sick. It's a painful imposition in my life and an embarrassment to me. My wife is supportive and reassuring. It will only be for a year, she says. So being in my fourteenth week of treatment means I only have another 34 weeks to go until I complete the 48 week program. I hope it doesn't get worse. I am thin and weak and sickly and I hate it all. I miss gym. My only hope is that I will actually be cured. At this point my cure percentage is 80% which is reason for optimism, I guess.
My psychological state is stable if you overlook the anger and frustration I have about the physical side effects. I have had no bipolar episodes and no psychotic breaks. I guess the Geodon is working well. I am depressed at times, however. This is also a side effect of the medication. The depressions are not serious (I'm not having thoughts of suicide) but persistent. I can generally handle them. But when I am sick in bed depression can creep up on me unexpectedly. This is not surprising, I guess. It can also manifest itself when I am idle. So I try to keep myself busy. At five in the morning this diary is fulfilling that task. I'm not idle and talking about my situation helps to divert my attention from depression.
Some promising financial help has arisen. I received $7000 in low-income assistance from a program the pharmacy has. This will go towards my Hepatitis co-pays but not the Procrit and Neupogin. Every bit helps, however. The cost of my latest prescription was a whopping $1200. This reflected my deductible for the year and should go down. I have also been accepted in the Patient Access Network (PAN). This program will also cover my Hepatitis C medication. I have left telephone messages with both the pharmacy and PAN to get more information about how each will work. The PAN membership card says that it is only for Hepatitis treatment. I'm hoping PAN will also cover Procrit and Neupogin since they are necessary for my treatment. I hope so.
My wife just woke up and turned on the coffee. There's nothing like the smell of fresh-brewed coffee in the morning. I'm drinking a cup. I don't care if it keeps me up; I can always take a nap later in the morning or early afternoon. While going to get a cup and chatting with my wife I was again taken by how beautiful our apartment is. I love it and although it is messy and needs a cleaning it feels like home. It took a while for that feeling to come over me but it's here now.
I'm running out of things to say. As usual, I have devoted the lion's share of this entry to my illness. It is annoyingly pervasive and dominates my life. I guess further entries will be the same. On the whole I can summarize by saying that the treatment saps my energy and makes me sick. But I am still psychologically sound except for small manageable depressions. I love my life and I keep chugging along.
I am now in the fourteenth week of my Hepatitis C treatment. Administering the medicine has become pretty routine. I rarely miss a Victrelis dose. I had to double up on Wednesday this week on the Procrit and Neupogin injections because I missed the former on Tuesday. Taking two injections back-to-back was no fun. I need to be more cognizant of my injection schedule.
I had a transfusion a couple of weeks ago and it made a huge difference in my energy level. I was very anemic beforehand, pale and unable to do anything at all other than lie in bed. The transfusion process takes about five and one half hours for two units. I listen to my iPod throughout. There is nothing else to do. The hospital provides a television but I haven't yet felt the need to watch it. Maybe I will watch it the next time I get a transfusion (if that happens.)
The Procrit is supposed to address my red blood cell count and hence my anemia. But the dose I'm taking isn't doing that. My wife is working with my heptologist's office to increase my dose. I'm not sure where in the process that is. But I expect to get a higher dose by next week. I'm not sure if it will happen as a larger single injection of Procrit or two or more lower doses. I hope it's the former. The skin covering my body fat in my belly is already ravaged by all of the injections I take.
The side effects of the medication I take are becoming more "routine," so to speak. My energy level is about four to five hours. For example I can paint for about three to four hours before I begin to shake with weariness. I have learned to recognize this sign and stop and go to bed. One day I did not. I pushed myself to finish what I was doing. I wasn't able to do this anyway because my hands began to shake. By the time I got to bed my whole body was shaking so violently I could barely get the covers over me. This lasted for about an hour. I learned my lesson from that incident. As much as I hate it it, I am never going to ignore the warning sign of weariness again.
I still shake a little bit when I go to bed and I spike a mild fever. It's uncomfortable and frustrating. I am in pain with flu-like symptoms. I typically take four Ibuprofen pills to get this under control and they help somewhat. If I am in a lot of pain (like I was during that incident mentioned above) I will take a Vicodin. I don't like doing that. The Vicodin is a narcotic and keeps me up at night, unable to fall asleep despite my nighttime medication. But it sure does kill the pain for the most part. I refuse to take more than one however.
I am energetic in the morning. I am able to shave and shower, clean up the kitchen, etc. After my simple chores I typically paint. I think I actually have close to eight hours of energy before I run out of steam after about three hours of painting. Writing in this diary at what is now 5:00AM probably means I will spend the day in bed after doing my chores. We'll see. I'm not sure I am going to have the energy to paint, unfortunately.
I am now on the third color of my painting. I am pleased with the way the painting is coming along. Alas, I mixed it with too much water so it goes on too thinly. My wife showed me a technique for drying out the paint and thereby thickening it. I place a small amount of the paint on a plate and let it dry while mixing it. I can then use the paint from the plate before it becomes too dry. It's an onerous process but at least allows me to proceed.
I hate being sick. It's a painful imposition in my life and an embarrassment to me. My wife is supportive and reassuring. It will only be for a year, she says. So being in my fourteenth week of treatment means I only have another 34 weeks to go until I complete the 48 week program. I hope it doesn't get worse. I am thin and weak and sickly and I hate it all. I miss gym. My only hope is that I will actually be cured. At this point my cure percentage is 80% which is reason for optimism, I guess.
My psychological state is stable if you overlook the anger and frustration I have about the physical side effects. I have had no bipolar episodes and no psychotic breaks. I guess the Geodon is working well. I am depressed at times, however. This is also a side effect of the medication. The depressions are not serious (I'm not having thoughts of suicide) but persistent. I can generally handle them. But when I am sick in bed depression can creep up on me unexpectedly. This is not surprising, I guess. It can also manifest itself when I am idle. So I try to keep myself busy. At five in the morning this diary is fulfilling that task. I'm not idle and talking about my situation helps to divert my attention from depression.
Some promising financial help has arisen. I received $7000 in low-income assistance from a program the pharmacy has. This will go towards my Hepatitis co-pays but not the Procrit and Neupogin. Every bit helps, however. The cost of my latest prescription was a whopping $1200. This reflected my deductible for the year and should go down. I have also been accepted in the Patient Access Network (PAN). This program will also cover my Hepatitis C medication. I have left telephone messages with both the pharmacy and PAN to get more information about how each will work. The PAN membership card says that it is only for Hepatitis treatment. I'm hoping PAN will also cover Procrit and Neupogin since they are necessary for my treatment. I hope so.
My wife just woke up and turned on the coffee. There's nothing like the smell of fresh-brewed coffee in the morning. I'm drinking a cup. I don't care if it keeps me up; I can always take a nap later in the morning or early afternoon. While going to get a cup and chatting with my wife I was again taken by how beautiful our apartment is. I love it and although it is messy and needs a cleaning it feels like home. It took a while for that feeling to come over me but it's here now.
I'm running out of things to say. As usual, I have devoted the lion's share of this entry to my illness. It is annoyingly pervasive and dominates my life. I guess further entries will be the same. On the whole I can summarize by saying that the treatment saps my energy and makes me sick. But I am still psychologically sound except for small manageable depressions. I love my life and I keep chugging along.
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