Recapping the journey ...
The following is a column I penned for the Jan. 3 edition of The (Maryville, TN) Daily Times, where I serve as managing editor.
“I found out I had Hep C way back in 1996 ... Didn't even know what it was! I experimented with drugs with my husband back in the ’70s, but only a few times. ... Guess that's all it might have took though!”
Suzy, via e-mail to a Hepatitis C awareness Web site
Suzy’s right. Experimenting with intravenous drugs a few times is all it would take.
According to various information sources, it would also only take snorting cocaine with friends using a common $20 bill, or getting an amateur tattoo, or being given virus-tainted blood products. If that’s you, then you might want to consider talking to your primary physician about checking your liver enzymes for Hepatitis C, a blood-borne virus spread by contact with the blood of an infected person.
As for me, I fell into all of those categories; however, like Suzy, I had never heard of Hepatitis C ... that is, until a little more than four years ago.
A few weeks before going on a medical mission trip to Guatemala in fall 2000, I had an annual checkup that revealed for the third year in a row my liver enzymes were slightly elevated. In previous years, the conversation in the doctor’s office went somewhat like this:
“Have you been under a lot of stress?” he might ask.
“I work at a newspaper; I live under stress,” I would likely respond, chuckling.
This time, though, my doctor said, “We need to chase this down. This is bugging me.”
The blood work was repeated a few weeks later, the results were the same and the decision was made to schedule an ultrasound. The problem: I was leaving for Guatemala in a little over a week and the ultrasound could not be scheduled before then. So, I decided to have it done the day after I returned from the mission trip.
Distractions and darkness
Spiritually, I went through a period of distraction and darkness and worked to combat it through prayer. I found myself listening to God as never before, even while mowing; for instance, there was this notation in my day planner on Oct. 23:
“Truth: I’m healthy until determined otherwise.
When I returned to Knoxville, I followed her advice, and she was correct. Thus was the beginning of a long medical journey, and believing that medicine is a gift from God, it also began a new phase in my spiritual journey.
If you were to look at my day planner from 2000, you would note what I eventually call “truths” received through prayer, such as in this Nov. 30 entry:
“God did not reveal this to me to shorten my life, but to lengthen it – by an hour, a day, a week, a year, or years.
“My life will be done when God’s plan for me is finished. ‘He who began a good work in me will be faithful to complete.’
“I can do all things through Christ who is my strength.”
That was just over four years ago.
At first, I was on an emotional roller coaster that was only controlled through education and the spiritual discipline of prayer. I picked up a copy of “Living With Hepatitis C: A Survivor’s Guide,” by Gregory T. Everson and Hedy Weinberg (Hatherleigh Press, Long Island, N.Y.) —an invaluable education tool. Tests revealed I was infected with virus genotype 1a/1b, which is the most common genotype in North America and is least affected by the current treatment.
When I was first diagnosed, the only treatment option involved three Interferon shots per week, combined with Ribavirin, for as much as 12 months. The side-effects were so bad for some people that they would discontinue treatment without ever revisiting the doctor. Combine that with the poor response rate (about 34 percent) and I thought, “Why put my family through that pain for such low odds? Even if it is successful, no one can tell me whether the virus will return.” Plus, I was just beginning the ministry candidacy process in the United Methodist Church and decided that it would be a great setback to become bogged down in such a treatment.
When news of the Pegylated Interferon/Ribavirin combined therapy surfaced as a possibility in 2001, I was excited. I was still a little bothered by the still low response rate (48 percent), but it was better than the previous therapy. However, there was a great deal of missing pieces to the puzzle. For instance, I wondered how many of those who became virus free after the extended treatment remained virus free? No one could say for sure; the treatment was too young.
So, since that time I have waited, prayed and educated myself. (Incidentally, I have learned that while education is good you can overload yourself, so I limit myself to checking progress reports a few times a year.)
More research funds needed
The U.S. Centers for Disease Control and Prevention estimates 2.7 million people are chronically infected with Hepatitis C. Authors Weinberg and Everson note that funding for Hepatitis C research at the National Institutes of Health increased from $39.7 million in 1999 to $49 million in 2000. That’s no drop in the bucket, but they also cite a report that estimates those infected with the virus “consume at least $15 billion per year for all their medical care.” Researchers say that total could reach $26 billion per year by 2021.
Even if you discount the emotional suffering and death from virus-related diseases, it would make sense to increase the funding purely from a bottom-line perspective — but those who hold the purse strings are not convinced. The Hepatitis C Epidemic Control and Prevention Act (SB1143) would appropriate $90 million to “establish, promote, and support a comprehensive prevention, research, and medical management referral program for Hepatitis C virus infection.” The bill was introduced in May 2003 and one has to wonder why it continues to languish in the Senate.
This past year was a turning point for me in that it appears that the virus is replicating at a greater rate; however, it tends to run in peaks and valleys and it is difficult to determine at what point you are measuring the viral load at the time of the test. In September, when the second of two blood tests was conducted, I did my usual routine of checking the latest studies and discovered a Reuters wire service report headlined, “Prognosis ‘excellent’ in Hepatitis C patients with sustained response to Interferon.” It went on to say that while the study had its limitations, those who undergo the drug therapy and maintain undetectable virus levels six months after the treatment have an excellent long-term prognosis in terms of relapse and liver disease. Even with its limitations (largely due to limited documentation on long-term follow-up of patients), that report answered one of my key questions.
That was just one of many factors that fell into place this past fall, leading me to the decision to enter into treatment, which begins Jan. 9. After three months of the PEG-Intron/Ribavirin combination, we may know whether I am a responder. If I respond, it will likely be extended to a total of 48 weeks. In my spirit, I feel the time is now; if I were to delay any longer, it could be too late and I might be left wondering, “What if I had done the treatment …”
There is much more that could be said about this journey, but I’ll leave all of that to my blog, “Gathering Wool,” which can be found from a link at my church Web site, www.themeadow.org
Despite the odds, my outlook is positive; I do myself no harm in taking such an attitude and likely do myself a quite a bit of good.
After all, there is this truth: “I can do all things through Christ who is my strength.”
Frank “Buzz” Trexler is managing editor at The Daily Times. You can e-mail him at frank.trexler@thedailytimes.com
“I found out I had Hep C way back in 1996 ... Didn't even know what it was! I experimented with drugs with my husband back in the ’70s, but only a few times. ... Guess that's all it might have took though!”
Suzy, via e-mail to a Hepatitis C awareness Web site
Suzy’s right. Experimenting with intravenous drugs a few times is all it would take.
According to various information sources, it would also only take snorting cocaine with friends using a common $20 bill, or getting an amateur tattoo, or being given virus-tainted blood products. If that’s you, then you might want to consider talking to your primary physician about checking your liver enzymes for Hepatitis C, a blood-borne virus spread by contact with the blood of an infected person.
As for me, I fell into all of those categories; however, like Suzy, I had never heard of Hepatitis C ... that is, until a little more than four years ago.
A few weeks before going on a medical mission trip to Guatemala in fall 2000, I had an annual checkup that revealed for the third year in a row my liver enzymes were slightly elevated. In previous years, the conversation in the doctor’s office went somewhat like this:
“Have you been under a lot of stress?” he might ask.
“I work at a newspaper; I live under stress,” I would likely respond, chuckling.
This time, though, my doctor said, “We need to chase this down. This is bugging me.”
The blood work was repeated a few weeks later, the results were the same and the decision was made to schedule an ultrasound. The problem: I was leaving for Guatemala in a little over a week and the ultrasound could not be scheduled before then. So, I decided to have it done the day after I returned from the mission trip.
Distractions and darkness
Spiritually, I went through a period of distraction and darkness and worked to combat it through prayer. I found myself listening to God as never before, even while mowing; for instance, there was this notation in my day planner on Oct. 23:
“Truth: I’m healthy until determined otherwise.
“Life is fragile.
“You have to trust God with the unknown: Sickness, health, the Afterlife.
“There is an extra-ordinariness to life. ...
“Lord, I trust you; help me in those areas I don’t trust you.”
I hung onto those thoughts as well as the following Scriptures:
“For God did not give us a spirit of timidity (fear), but a spirit of power, of love, and of self-discipline.” (2 Timothy 1:7)
“Keep your lives free from the love of money and be content with what you have, because God said, ‘Never will I leave you; never will I forsake you.’” (Hebrews 13:5)
I was in that state of mind on Saturday, Oct. 28, when I headed for Antigua, Guatemala, with about 30 medical professionals, most of whom eventually became aware of my liver enzyme situation and pending ultrasound. Still, I was unprepared for what would happen.
About midweek, I was feeling a little puny and made my way to the hospital where we were working. I was sitting in a dining area when an anesthesiologist from the medical team approached me.
“I heard you say you don’t drink,” she said. “Do you mind me asking why?”
I told her I was a chronic alcoholic and had not drank in years, also explaining the past drug use.
“Me too,” she said, then offered this: “I also heard you mention that your liver enzymes are up … I think you have Hepatitis C.”
I was immediately taken aback and asked, “What makes you say that?”
“Well, your color’s not good and I notice you sweat a lot.”
I explained that the Guatemalan water may had gotten to me and considered the possibility that the perspiration thing was genetic. She was unfazed and went on to suggest I get checked for the antibodies that would be present if I had been exposed.
Correct diagnosisWhen I returned to Knoxville, I followed her advice, and she was correct. Thus was the beginning of a long medical journey, and believing that medicine is a gift from God, it also began a new phase in my spiritual journey.
If you were to look at my day planner from 2000, you would note what I eventually call “truths” received through prayer, such as in this Nov. 30 entry:
“God did not reveal this to me to shorten my life, but to lengthen it – by an hour, a day, a week, a year, or years.
“My life will be done when God’s plan for me is finished. ‘He who began a good work in me will be faithful to complete.’
“I can do all things through Christ who is my strength.”
That was just over four years ago.
At first, I was on an emotional roller coaster that was only controlled through education and the spiritual discipline of prayer. I picked up a copy of “Living With Hepatitis C: A Survivor’s Guide,” by Gregory T. Everson and Hedy Weinberg (Hatherleigh Press, Long Island, N.Y.) —an invaluable education tool. Tests revealed I was infected with virus genotype 1a/1b, which is the most common genotype in North America and is least affected by the current treatment.
When I was first diagnosed, the only treatment option involved three Interferon shots per week, combined with Ribavirin, for as much as 12 months. The side-effects were so bad for some people that they would discontinue treatment without ever revisiting the doctor. Combine that with the poor response rate (about 34 percent) and I thought, “Why put my family through that pain for such low odds? Even if it is successful, no one can tell me whether the virus will return.” Plus, I was just beginning the ministry candidacy process in the United Methodist Church and decided that it would be a great setback to become bogged down in such a treatment.
When news of the Pegylated Interferon/Ribavirin combined therapy surfaced as a possibility in 2001, I was excited. I was still a little bothered by the still low response rate (48 percent), but it was better than the previous therapy. However, there was a great deal of missing pieces to the puzzle. For instance, I wondered how many of those who became virus free after the extended treatment remained virus free? No one could say for sure; the treatment was too young.
So, since that time I have waited, prayed and educated myself. (Incidentally, I have learned that while education is good you can overload yourself, so I limit myself to checking progress reports a few times a year.)
More research funds needed
The U.S. Centers for Disease Control and Prevention estimates 2.7 million people are chronically infected with Hepatitis C. Authors Weinberg and Everson note that funding for Hepatitis C research at the National Institutes of Health increased from $39.7 million in 1999 to $49 million in 2000. That’s no drop in the bucket, but they also cite a report that estimates those infected with the virus “consume at least $15 billion per year for all their medical care.” Researchers say that total could reach $26 billion per year by 2021.
Even if you discount the emotional suffering and death from virus-related diseases, it would make sense to increase the funding purely from a bottom-line perspective — but those who hold the purse strings are not convinced. The Hepatitis C Epidemic Control and Prevention Act (SB1143) would appropriate $90 million to “establish, promote, and support a comprehensive prevention, research, and medical management referral program for Hepatitis C virus infection.” The bill was introduced in May 2003 and one has to wonder why it continues to languish in the Senate.
This past year was a turning point for me in that it appears that the virus is replicating at a greater rate; however, it tends to run in peaks and valleys and it is difficult to determine at what point you are measuring the viral load at the time of the test. In September, when the second of two blood tests was conducted, I did my usual routine of checking the latest studies and discovered a Reuters wire service report headlined, “Prognosis ‘excellent’ in Hepatitis C patients with sustained response to Interferon.” It went on to say that while the study had its limitations, those who undergo the drug therapy and maintain undetectable virus levels six months after the treatment have an excellent long-term prognosis in terms of relapse and liver disease. Even with its limitations (largely due to limited documentation on long-term follow-up of patients), that report answered one of my key questions.
That was just one of many factors that fell into place this past fall, leading me to the decision to enter into treatment, which begins Jan. 9. After three months of the PEG-Intron/Ribavirin combination, we may know whether I am a responder. If I respond, it will likely be extended to a total of 48 weeks. In my spirit, I feel the time is now; if I were to delay any longer, it could be too late and I might be left wondering, “What if I had done the treatment …”
There is much more that could be said about this journey, but I’ll leave all of that to my blog, “Gathering Wool,” which can be found from a link at my church Web site, www.themeadow.org
Despite the odds, my outlook is positive; I do myself no harm in taking such an attitude and likely do myself a quite a bit of good.
After all, there is this truth: “I can do all things through Christ who is my strength.”
Frank “Buzz” Trexler is managing editor at The Daily Times. You can e-mail him at frank.trexler@thedailytimes.com
posted by Pastor Buzz at 1:14 AM
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