There is a great deal of evidence that creative visualization can influence the actual physical and mental performance of people in the real world. Studies have been done on academic test performance and athletic performance to use two examples and the evidence has indicated that if one group spends a specific amount of time visualizing successfully completing a task and another group spends the same amount of time practicing the task, the two groups have similar results upon undertaking the task. There is also evidence that the same sort of creative visualization influences recovery rates and treatment outcomes in disease situations.
It was with that in mind that I created my own visualization when I started HEP C treatment in the RG7128, RO5024048 clinical trial. I imagined that the polymerase inhibitor RG7128 was an armored division of fast moving powerful tanks that struck quickly and with lethal force at the HEP C virus. The interferon and Ribavirin were the methodical infantry units that followed the tanks and mopped up the remaining resistance from viruses that were either entrenched or bypassed by the fast moving armor. I visualized that image often throughout the clinical trial. After being tossed out of the clinical trial because of a viral breakthrough, my visualization metaphor changed. My tanks had run out of gas and were now abandoned by the side of the road.
After transitioning into Standard of Care therapy I still used a military image when I thought about my battle with the HEP C virus, but now it had switched to an image of slogging trench warfare with my infantry (interferon and Ribavirin) in hand-to-hand combat with the virus. It was going to be a 12 month struggle but they were attacking an already weakened foe and had strength of numbers and better supplies on their side. I used this image for several months and sure enough, after 14 weeks the numbers came back negative indicating my infantry were winning.
Then there was the possible viral breakthrough in December after six months of treatment and the subsequent return to being virally negative in January. The metaphor was fairly tattered by then but I tried to hold to it. As the months of treatment ground on and I eventually went on disability, the only military image that seemed to fit was the battle of Stalingrad; except I didn’t know which side I was on. Holding on till the end of treatment was the only concern. This carries on the military metaphor quite well actually. At the end of a long tour of duty on the front lines, the primary concern a soldier has is surviving until it is over.
At the end of treatment, the viral load was undetectable and the viral activity was negative so we can assume that the visualization was either successful and contributed to the treatment or at least did not inhibit the effectiveness of the treatment. I would recommend the technique to anyone undergoing any kind of treatment for disease. There is no need to use a military image, whatever is vivid and emotionally engaging will work. It is no doubt easier to maintain the metaphor for shorter treatments than longer ones, but anything that can help healing is worth pursuing. Just hope your metaphor doesn’t run out of gas on the side of the road. There is nothing sadder imaginarily speaking than watching your elite troops quit the battlefield.
Showing posts with label starting outpatient treatment. Show all posts
Showing posts with label starting outpatient treatment. Show all posts
Tuesday, August 16, 2011
Monday, July 12, 2010
A Good Word For Big Pharma
Huge multi-national pharmaceutical companies, aka Big Pharma, tend to have a bad reputation among many of the people who study health care issues or are in need of exotic drugs to treat diseases. These companies are often portrayed as greedy, rapacious, and insensitive and that’s just how they are described in polite company. While I understand where the opinions of these folks come from, from the point of view of a Hepatitis C sufferer, my opinion is a bit different.
I am somewhat familiar with the issues of drug research. Several folks I know are gene-splicers involved in medical research working at companies as large as Genentech down to small, privately held startup level concerns. My wife has a science background (MS level) and has worked for research companies and I have a lifelong interest in scientific issues and some familiarity with the protocols and problems of medical research. I admit I have tended to be on the side of the folks with low opinions of Big Pharma in the past, due in no small part to the insider stories I have heard over the years. This has changed since I was diagnosed with Hepatitis C and changed even more so since I entered treatment.
There are two reasons for the change. The first is that private sector drug companies are the drivers for research into new ways to treat Hep C. The taxpayer-funded National Institutes of Health (NIH) does not exactly throw money at Hep C. For instance, while there are estimated to be 4,000,000 people in the USA infected with Hepatitis C compared to a bit over 1,000,000 infected with HIV, the NIH spends only about $20 per patient on Hep C research versus roughly $2,750 per patient for HIV. They have also been known to siphon off bits of that pathetically low amount and send it to other research areas. On the other hand, recognizing that 4,000,000 people is a large market for their products, the major drug companies are funding a wide and ever-increasing range of studies to discover new and more effective treatments for Hepatitis C. This is an example of how the profit motive can result in far more benefits for disease sufferers than waiting around for government funded research projects to begin to address the issues.
The other reason is the benefits that I and other people undergoing Hepatitis C treatment have received from the drug companies researching and selling the drugs to treat the disease. When I moved from treatment on the RO5024048 study to out-patient standard of care treatment, there was a gap between the time when I left the study to the time when my treatment and prescription authorizations cleared the insurance company bureaucracy. The people at Roche provided some samples of both Ribavirin and interferon that allowed me to continue treatment without missing any doses as the paperwork cleared. I don’t know whether the samples “fell off the truck” or are routinely provided so that the people at the Hepatology Center can deal with just such issues as mine, but they were a godsend. Likewise when my prescription for procrit fell through the cracks at the specialty pharmacy for a week and it looked like I might have to drastically cut my Ribavirin dose until it arrived, a sample of procrit was also provided by a drug company to give me the chance to address my red blood count issues more quickly and keep me on the maximum dose of Ribavirin.
Big Pharma also has programs to assist uninsured and underinsured patients to receive the treatment they need. There are programs directly from the companies themselves as well as foundation programs funded in part by drug companies that provide treatment almost entirely for free for low-income patients. One of the people in my support group had their entire treatment paid for this way. The only time they had to pay was if a part of the treatment was done outside of the California Pacific Medical Center.
While Big Pharma is far from perfect, they are the folks that those of us infected with Hep C have to look towards for improvements in treatment. Until the public profile of the disease is raised and the government actually begins to dedicate serious money to research, it is the private sector that will drive the research into new treatments. We 4,000,000 potential customers are all saying, you get something that is highly effective and we will push the insurance companies to get it to us and to cover it.
I am somewhat familiar with the issues of drug research. Several folks I know are gene-splicers involved in medical research working at companies as large as Genentech down to small, privately held startup level concerns. My wife has a science background (MS level) and has worked for research companies and I have a lifelong interest in scientific issues and some familiarity with the protocols and problems of medical research. I admit I have tended to be on the side of the folks with low opinions of Big Pharma in the past, due in no small part to the insider stories I have heard over the years. This has changed since I was diagnosed with Hepatitis C and changed even more so since I entered treatment.
There are two reasons for the change. The first is that private sector drug companies are the drivers for research into new ways to treat Hep C. The taxpayer-funded National Institutes of Health (NIH) does not exactly throw money at Hep C. For instance, while there are estimated to be 4,000,000 people in the USA infected with Hepatitis C compared to a bit over 1,000,000 infected with HIV, the NIH spends only about $20 per patient on Hep C research versus roughly $2,750 per patient for HIV. They have also been known to siphon off bits of that pathetically low amount and send it to other research areas. On the other hand, recognizing that 4,000,000 people is a large market for their products, the major drug companies are funding a wide and ever-increasing range of studies to discover new and more effective treatments for Hepatitis C. This is an example of how the profit motive can result in far more benefits for disease sufferers than waiting around for government funded research projects to begin to address the issues.
The other reason is the benefits that I and other people undergoing Hepatitis C treatment have received from the drug companies researching and selling the drugs to treat the disease. When I moved from treatment on the RO5024048 study to out-patient standard of care treatment, there was a gap between the time when I left the study to the time when my treatment and prescription authorizations cleared the insurance company bureaucracy. The people at Roche provided some samples of both Ribavirin and interferon that allowed me to continue treatment without missing any doses as the paperwork cleared. I don’t know whether the samples “fell off the truck” or are routinely provided so that the people at the Hepatology Center can deal with just such issues as mine, but they were a godsend. Likewise when my prescription for procrit fell through the cracks at the specialty pharmacy for a week and it looked like I might have to drastically cut my Ribavirin dose until it arrived, a sample of procrit was also provided by a drug company to give me the chance to address my red blood count issues more quickly and keep me on the maximum dose of Ribavirin.
Big Pharma also has programs to assist uninsured and underinsured patients to receive the treatment they need. There are programs directly from the companies themselves as well as foundation programs funded in part by drug companies that provide treatment almost entirely for free for low-income patients. One of the people in my support group had their entire treatment paid for this way. The only time they had to pay was if a part of the treatment was done outside of the California Pacific Medical Center.
While Big Pharma is far from perfect, they are the folks that those of us infected with Hep C have to look towards for improvements in treatment. Until the public profile of the disease is raised and the government actually begins to dedicate serious money to research, it is the private sector that will drive the research into new treatments. We 4,000,000 potential customers are all saying, you get something that is highly effective and we will push the insurance companies to get it to us and to cover it.
Saturday, July 10, 2010
Treatment Update - 5 weeks along in Standard Therapy
My latest viral load test results came back and I have a viral load of just a hair over 5,000 I.U./ml. That is a 3.76 log reduction from the 12,900,00 I registered at the beginning of treatment 29 weeks ago. It also shows a trend in the right direction following the viral breakthrough. My numbers from week 24 going forward are 17,000; 40,000; 10,000 and now 5,000. While the 5,000 number is not yet a truly significant reduction from the peak of my breakthrough viral load, it is getting awfully close.
Two other numbers are showing some change as well. My hemoglobin has dropped to 8.2 from the 11.4 it had climbed to after they reduced my Ribavirin dose to 1000 mg. during the final 6 weeks I was in the research study. My neutrophil count has dropped to 500 in the five weeks since they reinstituted a full dose of interferon. The response to these test results by my hepatologist illustrates clearly the difference in being treated outside of a research study. As I discussed in this post, the researchers running the study need to control, as thoroughly as they possibly can, the drugs that are utilized in the study. One of the primary goals of studies like this, after they determine the drug is effective against the virus, is to determine the side effects and potential dangers of the drug. They know the side effects of the standard of care and by adding only the new drug to the treatment, they can see if it amplifies or minimizes or introduces completely new side effects to the standard treatment. So when presented with test results that show that the research subject has anemia or low neutrophil counts they adjust the doses of the standard of care drugs or the research drugs to determine whether this is what is causing the problems. Unfortunately this can result, as in my case, in reducing the effectiveness of the treatment.
Now that I am being treated outside the research study in the standard of care therapy, they have a panoply of treatments they can use to address the problems and keep me on the full doses of the anti-viral drugs. In my case, the hemoglobin count went down fairly quickly and they put me on folic acid to attempt to build up my red blood cells. When that did not have much effect after about 10 days of taking it and my hemoglobin continued to fall, they prescribed procrit, a drug that directly stimulates red blood cell production. It is a drug that has to be injected once a week under the skin, like the interferon. In doing this for the first time, I tried to inject it into a pinched-up roll of fat on the right side of my belly area and discovered that the skin in that part of my body is like rubber. After trying three times to push the needle through this highly resilient and puncture-resistant patch of skin, I gave up and tried my left side. On that side it went right in and the injection was no problem. I’m thinking of offering the skin on the right side of my spare tire as a new material for bicycle tires. Spare tire tires; alligator skin tires; super skin tires; there has to be some money in selling skin outside the skin industry.
They are also attacking the low neutrophil count by prescribing neupogen another injectable drug that stimulates white blood cell production. I am currently in the process of urgent insurance authorization for that drug and should start using it next week. My wife thinks all this is turning me into a pincushion, as I will now be injecting three different drugs every week. I am also taking levothyroxine to stabilize my thyroid function. The change in thyroid function is also a side effect of the interferon. Luckily, this drug is in pill form and I take it once a day. The three drugs mentioned here are all being taken to enable me to continue taking full doses of interferon and Ribavirin to combat the Hepatitis C virus.
So the drug roster being taken either weekly or daily to fight the Hep C or the side effects of the drugs is:
Pegylated Interferon
Ribavirin
Procrit
Neupogen
Levothyroxine
Celexa
Trazadone
Tramadol
Ativan
The final numbers are not in yet as my nurse AR is working to find the cheapest drugs with the lowest copays but so far it works out to be a bit over $375 per month in copayments. This may go up or down some but if it holds at that number it is about $4500 for the duration of the treatment, assuming no additional drugs are needed.
Considering the only drugs I ever really took up until this time were the occasional course of antibiotics; painkillers after surgery or some muscle relaxants after throwing my back out, this level of involvement with the pharmaceutical industry is a whole new world…
Two other numbers are showing some change as well. My hemoglobin has dropped to 8.2 from the 11.4 it had climbed to after they reduced my Ribavirin dose to 1000 mg. during the final 6 weeks I was in the research study. My neutrophil count has dropped to 500 in the five weeks since they reinstituted a full dose of interferon. The response to these test results by my hepatologist illustrates clearly the difference in being treated outside of a research study. As I discussed in this post, the researchers running the study need to control, as thoroughly as they possibly can, the drugs that are utilized in the study. One of the primary goals of studies like this, after they determine the drug is effective against the virus, is to determine the side effects and potential dangers of the drug. They know the side effects of the standard of care and by adding only the new drug to the treatment, they can see if it amplifies or minimizes or introduces completely new side effects to the standard treatment. So when presented with test results that show that the research subject has anemia or low neutrophil counts they adjust the doses of the standard of care drugs or the research drugs to determine whether this is what is causing the problems. Unfortunately this can result, as in my case, in reducing the effectiveness of the treatment.
Now that I am being treated outside the research study in the standard of care therapy, they have a panoply of treatments they can use to address the problems and keep me on the full doses of the anti-viral drugs. In my case, the hemoglobin count went down fairly quickly and they put me on folic acid to attempt to build up my red blood cells. When that did not have much effect after about 10 days of taking it and my hemoglobin continued to fall, they prescribed procrit, a drug that directly stimulates red blood cell production. It is a drug that has to be injected once a week under the skin, like the interferon. In doing this for the first time, I tried to inject it into a pinched-up roll of fat on the right side of my belly area and discovered that the skin in that part of my body is like rubber. After trying three times to push the needle through this highly resilient and puncture-resistant patch of skin, I gave up and tried my left side. On that side it went right in and the injection was no problem. I’m thinking of offering the skin on the right side of my spare tire as a new material for bicycle tires. Spare tire tires; alligator skin tires; super skin tires; there has to be some money in selling skin outside the skin industry.
They are also attacking the low neutrophil count by prescribing neupogen another injectable drug that stimulates white blood cell production. I am currently in the process of urgent insurance authorization for that drug and should start using it next week. My wife thinks all this is turning me into a pincushion, as I will now be injecting three different drugs every week. I am also taking levothyroxine to stabilize my thyroid function. The change in thyroid function is also a side effect of the interferon. Luckily, this drug is in pill form and I take it once a day. The three drugs mentioned here are all being taken to enable me to continue taking full doses of interferon and Ribavirin to combat the Hepatitis C virus.
So the drug roster being taken either weekly or daily to fight the Hep C or the side effects of the drugs is:
Pegylated Interferon
Ribavirin
Procrit
Neupogen
Levothyroxine
Celexa
Trazadone
Tramadol
Ativan
The final numbers are not in yet as my nurse AR is working to find the cheapest drugs with the lowest copays but so far it works out to be a bit over $375 per month in copayments. This may go up or down some but if it holds at that number it is about $4500 for the duration of the treatment, assuming no additional drugs are needed.
Considering the only drugs I ever really took up until this time were the occasional course of antibiotics; painkillers after surgery or some muscle relaxants after throwing my back out, this level of involvement with the pharmaceutical industry is a whole new world…
Monday, June 28, 2010
Why Did I Continue Treatment…
Somebody asked the other day about what the thought process was that resulted in the decision to continue treatment in the face of a viral breakthrough roughly 6 months after the RO5024048 study began. It’s a good question and thinking about the answer made me thoroughly examine why I did decide to go on. After all, why not take a break after 6 months of side effects and wait for new drugs to come online?
It started with the positive initial results I had in the study. My viral load dropped from 13,000,000 to 4,000 (about a log 3.5 drop) in the first week of the study. That’s a pretty impressive result from 7 days of treatment and I was at 195 after 4 weeks of the study. Since I did not become undetectable (less than 15 which is the limit of the test’s detection) at week 4, I was did not have a Rapid Viral Response (RVR) but rather an Early Viral Response or EVR. An RVR means that in the general statistics of Hep C treatment you have about a 60% chance of clearing the virus (also known as a sustained viral response or SVR). An EVR puts you in the 40% range. While these are the cold hard statistics garnered throughout the history of Hep C treatment, the early results for the experimental drug RO5024048, which I believe I was taking, indicate the possibility of a 70% clearing rate. I was undetectable after my 6th week viral load test which means I reached that stage sometime between the 28th and 42nd day of treatment. For all I know my viral load dropped to undetectable the day after my 4th week test putting me tantalizingly close to the RVR cutoff. Sure it’s whistling past the graveyard to think that, but let me carry some illusions through this process.
Both I am my doctors are fairly well convinced that the viral breakthrough was the result of the dose adjustments in my interferon that were mandated by the research protocols. Treatment outside the study under the Standard of Care for Hep C gives me the opportunity to undergo the course of treatment at the full doses of interferon and Ribavirin. This gives the treatment the best chance of working for me.
I was at an undetectable viral load for somewhere around 18 weeks. During this time, my liver enzymes returned to normal and all my liver tests returned results in the normal range. They tell me that this means the inflammation in my liver has subsided and it has had at least a small window of time to begin a bit of healing. My liver disease was between a stage one and two and giving it time to heal will give me a much longer timeframe for the progress of the damage. If continuing treatment returns me to an undetectable level for another 20 plus weeks, this just can’t be a bad thing for my liver.
All things considered, I tolerate the treatment well. I have side effects and some are worse than others, but compared to the treatment issues that many other patients have it is pretty reasonable. I am continuing to work, albeit at a reduced level of hours. I able to keep what food I eat down through the occasional wave of nausea. The flu-like symptoms follow a reasonably predictable cycle and do not overwhelm me. Insomnia is an ongoing issue, but when it gets particularly intrusive, I have drugs that allow me to sleep without a sedative hangover. The most insidious effect the treatment had on me was the gradual onset of depression. However the deployment of antidepressant medication has made that a manageable issue as well. So if I can tolerate the treatment, why not continue to be aggressive in attacking the virus.
My employment situation is good. Both my boss and the Executive Director of the organization are firmly in my corner and are willing to work with me to create a situation which gives me the best chance to do my job and gives the organization some actual benefit from my continuing to work. There is no guarantee that this level of support will continue indefinitely. Either of the individuals might move on or retire and their replacements might not be as supportive.
My benefits are good. My employer pays for my health plan and the plan I have allows access to the CPMC Hepatology Center which has first-rate doctors and is on the leading edge in both treatment and research. I still have accumulated sick time I can use (though every time I look the number seems to have shrunk a lot more quickly than I thought it would) and my organization allows other employees to donate sick time to me. Luckily, I haven’t alienated everyone in the organization yet and several people (who seem to be frighteningly healthy) have offered to donate time to me. Again, this is the sort of thing you can’t count on being there forever, so why not take advantage of it while I can.
I have a pretty grim view of the financial future of the USA. What with huge deficits and unfunded liabilities; high unemployment, several more years of the housing mess in front of us, the treasury printing trillions of new dollars, the states being for all practical purposes bankrupt, etc, etc, etc, I figure I should go for the treatment while I can afford to do it.
Finally, I have the full support of my wife. She has been absolutely unflinching in her support throughout this process. After we talked about all the reasons for and against continuing, she supported the decision to go ahead and continues to believe along with me, that we are going to beat this virus. After all, it’s not even really alive. It’s just a protein coat with some RNA, damn it and if we can’t even beat something that doesn’t even meet the complete definition of being actually alive, what chance do we have…
It started with the positive initial results I had in the study. My viral load dropped from 13,000,000 to 4,000 (about a log 3.5 drop) in the first week of the study. That’s a pretty impressive result from 7 days of treatment and I was at 195 after 4 weeks of the study. Since I did not become undetectable (less than 15 which is the limit of the test’s detection) at week 4, I was did not have a Rapid Viral Response (RVR) but rather an Early Viral Response or EVR. An RVR means that in the general statistics of Hep C treatment you have about a 60% chance of clearing the virus (also known as a sustained viral response or SVR). An EVR puts you in the 40% range. While these are the cold hard statistics garnered throughout the history of Hep C treatment, the early results for the experimental drug RO5024048, which I believe I was taking, indicate the possibility of a 70% clearing rate. I was undetectable after my 6th week viral load test which means I reached that stage sometime between the 28th and 42nd day of treatment. For all I know my viral load dropped to undetectable the day after my 4th week test putting me tantalizingly close to the RVR cutoff. Sure it’s whistling past the graveyard to think that, but let me carry some illusions through this process.
Both I am my doctors are fairly well convinced that the viral breakthrough was the result of the dose adjustments in my interferon that were mandated by the research protocols. Treatment outside the study under the Standard of Care for Hep C gives me the opportunity to undergo the course of treatment at the full doses of interferon and Ribavirin. This gives the treatment the best chance of working for me.
I was at an undetectable viral load for somewhere around 18 weeks. During this time, my liver enzymes returned to normal and all my liver tests returned results in the normal range. They tell me that this means the inflammation in my liver has subsided and it has had at least a small window of time to begin a bit of healing. My liver disease was between a stage one and two and giving it time to heal will give me a much longer timeframe for the progress of the damage. If continuing treatment returns me to an undetectable level for another 20 plus weeks, this just can’t be a bad thing for my liver.
All things considered, I tolerate the treatment well. I have side effects and some are worse than others, but compared to the treatment issues that many other patients have it is pretty reasonable. I am continuing to work, albeit at a reduced level of hours. I able to keep what food I eat down through the occasional wave of nausea. The flu-like symptoms follow a reasonably predictable cycle and do not overwhelm me. Insomnia is an ongoing issue, but when it gets particularly intrusive, I have drugs that allow me to sleep without a sedative hangover. The most insidious effect the treatment had on me was the gradual onset of depression. However the deployment of antidepressant medication has made that a manageable issue as well. So if I can tolerate the treatment, why not continue to be aggressive in attacking the virus.
My employment situation is good. Both my boss and the Executive Director of the organization are firmly in my corner and are willing to work with me to create a situation which gives me the best chance to do my job and gives the organization some actual benefit from my continuing to work. There is no guarantee that this level of support will continue indefinitely. Either of the individuals might move on or retire and their replacements might not be as supportive.
My benefits are good. My employer pays for my health plan and the plan I have allows access to the CPMC Hepatology Center which has first-rate doctors and is on the leading edge in both treatment and research. I still have accumulated sick time I can use (though every time I look the number seems to have shrunk a lot more quickly than I thought it would) and my organization allows other employees to donate sick time to me. Luckily, I haven’t alienated everyone in the organization yet and several people (who seem to be frighteningly healthy) have offered to donate time to me. Again, this is the sort of thing you can’t count on being there forever, so why not take advantage of it while I can.
I have a pretty grim view of the financial future of the USA. What with huge deficits and unfunded liabilities; high unemployment, several more years of the housing mess in front of us, the treasury printing trillions of new dollars, the states being for all practical purposes bankrupt, etc, etc, etc, I figure I should go for the treatment while I can afford to do it.
Finally, I have the full support of my wife. She has been absolutely unflinching in her support throughout this process. After we talked about all the reasons for and against continuing, she supported the decision to go ahead and continues to believe along with me, that we are going to beat this virus. After all, it’s not even really alive. It’s just a protein coat with some RNA, damn it and if we can’t even beat something that doesn’t even meet the complete definition of being actually alive, what chance do we have…
Friday, June 25, 2010
The Cost of Stress
The results of the first viral load test since I began treatment outside the study came back yesterday and my viral load numbers are trending back down. This is enormously good news. The first test indicating the viral breakthrough showed a viral load of 17,000. The retest number was a touch above 40,000. Now, one month after the initial breakthrough and two weeks after resuming full doses of interferon, the number has dropped to 10,000. This offers confirming evidence for the theory that the breakthrough resulted from the series of reduced and interrupted doses over the final few months of my participation in the study and not because the Hepatitis C virus had begun to develop resistance to interferon. This also adds weight to the belief that it is indeed worthwhile to continue treatment and potentially clear the virus.
Tracing the path of stress during the past month leading up to this result has been a learning experience of the first order. The initial news of the breakthrough brought a tremendous jolt of adrenaline and anxiety. I was convinced the breakthrough had everything to do with the interferon dosing changes due to my low neutrophil counts and was intent on continuing treatment in some form. The uncertainty of whether or not the study doctors and my doctors would agree and what this would mean for ongoing relations with the researchers resulted in a solid seven days of anxiety. The agreement and support of the doctors involved was an all-too-brief relief as the stress shifted to getting rapid treatment and prescription authorizations from the health insurance company and attempting to secure bridge doses of interferon and ribavirin that would allow no further dose interruptions until the prescriptions were filled. Having accomplished that, the stress shifted to finding the best suppliers for the prescriptions which would result in the lowest possible co-payments so as to make ongoing treatment affordable. Finally, the wait for the first round of tests indicating whether the renewal of full-dose interferon treatment would knock the viral load back down continued the grind.
The first 10 days were actually a period of relatively high-energy as news was received, reactions were dealt with, research was done, meetings were planned for, calls were made and decisions were arrived at. The next 10 days were a marathon of waiting for authorizations, arranging prescriptions and deliveries and generally feeling my physical and mental energy drain away. The final days were a series of forced marches through each day. It became hard to sleep and harder to stay awake. I woke up tired, had to take several catnaps a day at my job to be able to keep any mental focus at all and when not at work found myself falling asleep after any activity that required mental effort.
The relief of seeing the new viral load numbers bestowed the great gift of sleeping through the night for the first time in weeks; and sleeping through the following day, and continuing to doze off throughout the day today. Who knows, a few more days of 16 hours of sleep and I might be able to watch the knock-out round of the World Cup with the attention it deserves.
Tracing the path of stress during the past month leading up to this result has been a learning experience of the first order. The initial news of the breakthrough brought a tremendous jolt of adrenaline and anxiety. I was convinced the breakthrough had everything to do with the interferon dosing changes due to my low neutrophil counts and was intent on continuing treatment in some form. The uncertainty of whether or not the study doctors and my doctors would agree and what this would mean for ongoing relations with the researchers resulted in a solid seven days of anxiety. The agreement and support of the doctors involved was an all-too-brief relief as the stress shifted to getting rapid treatment and prescription authorizations from the health insurance company and attempting to secure bridge doses of interferon and ribavirin that would allow no further dose interruptions until the prescriptions were filled. Having accomplished that, the stress shifted to finding the best suppliers for the prescriptions which would result in the lowest possible co-payments so as to make ongoing treatment affordable. Finally, the wait for the first round of tests indicating whether the renewal of full-dose interferon treatment would knock the viral load back down continued the grind.
The first 10 days were actually a period of relatively high-energy as news was received, reactions were dealt with, research was done, meetings were planned for, calls were made and decisions were arrived at. The next 10 days were a marathon of waiting for authorizations, arranging prescriptions and deliveries and generally feeling my physical and mental energy drain away. The final days were a series of forced marches through each day. It became hard to sleep and harder to stay awake. I woke up tired, had to take several catnaps a day at my job to be able to keep any mental focus at all and when not at work found myself falling asleep after any activity that required mental effort.
The relief of seeing the new viral load numbers bestowed the great gift of sleeping through the night for the first time in weeks; and sleeping through the following day, and continuing to doze off throughout the day today. Who knows, a few more days of 16 hours of sleep and I might be able to watch the knock-out round of the World Cup with the attention it deserves.
Thursday, June 17, 2010
The Rest of the Story…
What really happened when I formally left the study was, needless to say, much less histrionic, though it had its own brand of drama.
I got a call from AVB in the morning announcing the lab results were back, I had a confirmed viral breakthrough and I had to stop taking the meds belonging to the research study. She was working on getting some medical samples from the Roche representative that would bridge me over until my insurance authorizations went through and my prescriptions for Pegasys and Ribavirin were filled. She told me that when she had some news she would contact me and then I could bring my old meds in and get the bridge meds from her.
Sure enough the call came through at 3:00 p.m. that same day while I was in an event planning meeting. She had arranged the bridge meds and could I get to the hepatology research center no later than 4:30 to pick them up and drop off the old stuff. I was without transportation, but promised to do my best. I excused myself from the meeting by telling everyone I had to go pick up drugs and started walking quickly the 1 ½ miles to my home.
As anyone in San Francisco who relies on the Municipal Railroad system, or MUNI as it is infamously known, schedules are something that are mostly honored in their breach. I walked the distance home along a MUNI route without seeing a bus during the entire 40 minutes. I grabbed my meds, diary, sharps container and fanny pack jumped in my trusty pickup and headed back toward the research center. I went back over the same route and still did not see a bus by the time I had to turn off on other streets.
When I got to the center, I met AVB and she collected my old meds and other materials. I actually got to keep my Roche Logowear. She explained that she had samples of Ribavirin and Pegasys that should tide me over until the insurance authorizations cleared and that she was on her way to Dr. B’s office (who had stayed late to be available) to get the necessary documents signed. She returned with the meds and with the gentleman who would be the nurse coordination for my treatment with Dr. B. She introduced us; he gave me his contact info and he told me he would be in touch with a day or two to follow up on the authorization status. He gave me some lab test request sheets and a preliminary schedule of when I needed to get lab tests done. The he shook my hand and, wished me good luck and said he would contact me soon.
AVB then went over the kit of materials that is given to outpatient treatment subjects and showed me how to use the preloaded syringes that the Pegasys came in. No more vials to fill syringes from, Yay!
At that point she wished me good luck, said that she was still available as well if I had questions or needed to go over any of my previous history on the study. She choked up a bit. I choked up a bit. I thanked her for all the efforts she had made on my behalf, she said don’t worry about that now, just work on having a successful treatment. We shook hands and she put her arm on my shoulder and walked me down the hall to say good-bye.
And that’s the Rest Of The Story…(apologies to Paul Harvey)
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