I am a 57-year-old white American male infected with Hepatitis C. I am involved in a controlled medical research study by Roche Pharmaceuticals of an experimental Polymerase Inhibitor (RO5024048 also known as RG7128) drug therapy for the virus. This document is the story of my illness and the experience of treatment. My lovely and pretty damn wonderful wife will be contributing her take on the experience as well.

Monday, August 22, 2011

Leaving the Support Group

As discussed previously in this post, support groups are an excellent program for HEP C sufferers. They provide a safe and secure environment to talk about the disease. They are a useful pool of knowledge about the side effects, the strategies for coping with them and, of course they provide a wealth of information about treatment. The sheer relief of finding people who have had similar trials, successes, and failures is worth attending in itself. All that being said, I stopped going to my support group in January of 2011.

Some of the reasons are the same as the ones described in this post, some are more personal. The overall tone of the group began to seem as though it was a group therapy session for folks with social interaction deficits rather than a support group dedicated to dealing with HEP C. The amount of time spent discussing the relationships and personal difficulties of the people in the group began to outweigh the time spent discussing the effects of HEP C on their lives and the sharing of knowledge about facing and treating the disease. While this kind of discussion was clearly important to those who initiated it, it seemed to me to be a case of too much information and too much bitching. It never bothers me when someone bitches about the difficulties the disease or its treatment creates in their lives, it does not seem relevant to here repeated complaints about their fathers, mothers, brothers and others in their lives. This may very well be an example of my being selfish and not caring enough about my fellow HEP C sufferers. I fully admit this. But I would rather spend the time talking about the disease, the treatments, the knowledge others have about these things and the general state of the HEP C community, research and public awareness of the disease. All of these concerns can be personal and can intersect with the personal lives of the folks with the disease; I just don’t want to hear about their landlord having a problem with their cat.

It came to a head when I realized that I had to take an Ativan before going to the meetings in order to get through them without becoming anxious and upset. It seemed that the requirement to be tranquilized to go the meeting was probably a sign that they had outlasted their usefulness. I still remain in contact with a few of the people in the group, but the dynamics of the actual bi-weekly meetings just became more than I could stand.

I still believe that support groups are a great resource. If you have one in your area you should definitely check it out. The chances are that it will be a great source of emotional support and information. Everyone with HEP C deserves all the support they can get and a support group is a great place to seek it. Perhaps those of us who are surly loners just can’t handle all that good feeling. Ah well…

Sunday, August 21, 2011

A Shout Out to Gregg Allman

The television was tuned to one of those deep cable cultural stations which was running a German film from the thirties when they went to commercial. The ad started out with a voice over from Gregg Allman mentioning the Allman Brothers Museum in Macon, Georgia. Then it morphed in a completely different direction. In a full-face statement, he announced that in 1999 he had been diagnosed with Hepatitis C. He said that on his doctor’s advice he eventually acknowledged the reality of the disease and sought help. He said that he was glad he did and that doing so allowed him to not just have memories of the past, but to continue to make memories today. He urged people to go to tuneintohepc.com for more information and to get tested.

Even though a number of prominent people in various walks of live have contracted HEP C, (list here) there have not been a correspondingly large number who have spoken out about their disease. Natalie Cole, a fellow musician who is featured on the tuneintohepc.com website talked about the disease, how she got it and what the treatment was like in 2008. A link to one of the articles is here. Pamela Anderson has talked about her disease as well. Allman talked to Sanjay Gupta on CNN about the disease, his cancer and his liver transplant earlier this summer (link here). He also made the TV public service commercial noted above. I’m sure there are others, but just the fact that it is hard to identify them means that HEP C sufferers have not had the same celebrity support that folks with many other diseases have had.

Folks who have HEP C, whether celebrity or no, have no obligation to reveal their health information to anyone. To assume that they bear greater responsibility to advocate for the disease is wrong. All of us may choose how we deal with the fact that we have it. Still, it would do a great deal for raising the awareness of HEP C if all of us who have it, especially celebrities, speak out about the disease, advocate for more research, and for those of us who have undergone treatment, inform people about what to expect if they decide to be treated.

For now, though, I would like to thank Mr. Allman for making his public service announcement, for going on CNN and for being out front and straightforward about the disease. Let’s hope it leads a lot more people to be tested and to be able to consider treatment while their liver can still be saved.

Thursday, August 18, 2011

New Drugs, New Treatments, New Hype

In mid-June of this year while at a baseball game watching my childhood hometown Minnesota Twins defeat my adopted home town team San Francisco Giants, a friend asked if I was excited about the news in the paper that morning about the new cure for Hepatitis C. He said that it cured 80% of all patients in clinical trials and that the treatment might last only 24 weeks instead of the standard 48 week therapy. The news was stunning. Which drug was it? I had been keeping up with the various new drugs in the FDA approval pipeline and had never heard of one with a viral clearance rate of more than 65%. Of course he couldn’t remember the name and none of us had a smart phone with us, so it took until after game and back at home before I could do any research.

This article appeared in the San Francisco Chronicle. It stated that about 80% of HEP C patients “with the most common strain” and relapsers from previous treatment were cured by the new drug. The drug was the protease inhibitor telaprevir, brand named Incivek by its developer Vertex Pharmaceuticals. Imagine the amount of money they must have paid a naming company to develop that brand name; rolls right off the tongue. The results from earlier studies had indicated that telaprevir increased the Sustained Viral Response (SVR) in genotype 1 HEP C, the most common genotype infecting US residents, to 65%. It seemed prudent to search out the source material to sort out all these percentages. A quick search of the web found this press release. In the fourth paragraph of the release it stated that “The sustained virologic response for patients treated with Incivek across all studies, and across all patient groups, was between 20 and 45 percent higher than current standard of care.” This seems to indicate that the low end of the SVR rate was indeed 65% and the high end might be almost 90%. The article and press release also indicated that 60% of treatment naïve patients achieved a rapid viral response (RVR) in 4 weeks and these folks not only would only be in treatment for 24 weeks, but had a 90% chance of achieving an SVR as well. It is not clear what the SVR rate for the folks who don’t achieve a RVR and continue for 48 weeks of treatment has been in the tests. It is also unclear whether there is a difference in SVR rates between genotype 1a and 1b. Folks who had relapsed after previous treatments had a 32% SVR rate when treated with the telaprevir, interferon and Ribavirin cocktail. This is very good news indeed for HEP C patients.

A month earlier, this article appeared in the NY Times announcing the debut of Victrelis the brand name of boceprevir (again where do these brand names come from) another protease inhibitor, this one developed by Merck. This drug, which is taken for either 24 or 48 weeks in combination with interferon and Ribavirin, has an SVR rate for treatment naïve genotype 1 HEP C patients of 65-70%. The SVR rate for patients who relapsed after previous treatment is about 40%. Boceprevir is a bit different in that the patient starts with 4 weeks of standard treatment and then adds the boceprevir for either an additional 24 or 48 weeks depending on the viral response. So we have two competing drugs available whose addition to the standard of care treatment increases the SVR rate by a range of 20 to 40 percent. Good news indeed but what is the rest of the story.

The rest of the story has several chapters from side effects to cost of treatment. Looking at side effects first, both boceprevir (Victrelis) and telaprevir (Incivek) have additional side effects to add to those caused by interferon and Ribavirin and both can somewhat intensify the interferon and Ribavirin side effects as well.

Boceprevir can increase the risk of anemia and neutropenia, cause strange taste sensations and cause intestinal tract issues.
Telaprevir also increases the risk of anemia, causes diarrhea, and most importantly can cause an itchy rash. The rash can be serious enough to require that the patient stop taking the telaprevir.

The new drugs are very much like the established treatment in that those with lower viral loads at the beginning of treatment have a better chance of success than those with high viral loads. Also like the established treatments, anyone who has ever tried a treatment, whether standard or experimental, and failed also has a considerably lower chance of success.

Both drugs are protease inhibitors. This means that they inhibit the action of an enzyme that the virus needs to reproduce. They are similar to the protease inhibitors developed to fight the AIDS virus. This means that they must be taken on a fairly rigid schedule: three pills per day, one every eight hours. If that means waking up to take it, wake up you must. They also need to be taken with food, so you cannot pop a pill and run off. You have to have certain types of food with the dose of the drug. This means that for 12 weeks (telaprevir) or 24-48 weeks (boceprevir) your life will be scheduled around your drug dosing.

Both drugs are vastly expensive as discussed in this article. Boceprevir/Victrelis will cost $1,100 per week making the cost of a full course of the drug either $26,400 (24 weeks) or $52,800 (48 weeks) depending on your viral response. Telaprevir/Incivek has been priced at $49,000 for the 12 week course of treatment. This cost is in addition to the $15,000-$20,000 (24 weeks) or $30,000-$40,000 (48 weeks) for the interferon and Ribavirin with which they must be taken. This also does not count the cost of the Procrit to fight anemia ($500 per week) or the Neupogen to fight neutropenia (also about $500 per week) should you need them. There are also the costs involved with antidepressants, sleep medications, thyroid medications, pain medications and whatever you will be using to deal with the rash and itching in the case of the telaprevir.

It is also not clear how quickly insurance plans will add them to their drug formularies. Kaiser Permanente, my HMO here in California, has added both to its formulary. I do not know which other insurance providers have done the same. Even if they are added, it is not clear what the requirements will be for a patient to be eligible to be prescribed and how easily insurance companies will make them available. From an economic point of view they should make them easy to get as even at these prices the cost of treatment is still much less than the cost of a liver transplant.
For those without insurance, I do not know how anyone but the wealthy could afford the additional cost. The cost of standard of care treatment is by itself so high as to exclude many HEP C sufferers from being treated. There are programs to assist those with low resources to get treatment but even with the drugs deeply discounted the ability to come up with as much as $20,000 for a course of treatment would seem impossible.

Despite all these potential problems, the advent of new drugs to combat HEP C is excellent news. Ramping up the SVR rate to a range of 60% - 80% is a vast improvement over the standard of care treatment rate that topped out at 45%. Psychologically, it is far more encouraging to go into a course of treatment thinking you have a 2-1 shot at beating the virus than to go in thinking you have just under a 50-50 shot. These drugs are also only the leading edge of a wave of new drugs and new therapy approaches that are under research and testing. There are new polymerase inhibitor drugs that have SVR rates similar to telaprevir, but with fewer and less severe side effects. Testing on the holy grail of finding a treatment regimen that does not have to include interferon is also underway with early stage results coming in soon. Within the past year, scientists have discovered a method of growing the HEP C virus in the lab. This means that future early stage testing of drugs can be done directly on the virus instead of with animal models. This should increase the pace of research dramatically. In all it is a good time to have HEP C if you are one of us infected. There are established treatments, there are promising new treatments and there are drugs and treatments in the research and development pipeline that seem to point to future in which HEP C can be attacked and treated with a high expectation that it will be successfully cleared from the human body.

Perhaps we can believe the hype surrounding these new drugs. Despite the problems of determining the actual efficacy of the drug in your own case, the potential difficulties in obtaining and paying for the treatment and persevering through the side effects, they have advanced the cause of combatting Hepatitis C.

The more cures, the fewer pig livers will have to be implanted in humans (sorry, I’ve been reading far too many science fiction novels during treatment).

Tuesday, August 16, 2011

Changes In Visualizations During Treatment

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.

Friday, August 12, 2011

Night Sweats Redux

After finishing 18 months of treatment involving powerful, side-effect laden drugs one’s expectations are that once you are no longer taking the drugs, you no longer experience the side effects. This does not exactly seem to be the case. Shortly after the first week following the end of treatment, I began to experience night sweats again.

Within a few months of beginning the drug trial in 2010, I started to experience night sweats, as related in this post. The night sweats were intense with heavy sweat soaking through sleeping clothes and even requiring changing the sheets in some cases. These went on for several weeks until my body seemed to adjust to the various drugs and they receded to only an occasional event. This was the norm for about a year until they became a bit more common during the final 8 weeks of treatment. They were still not the heavy sweats that characterized the early part of treatment, but they did happend a few times a month toward the end.

About ten days after finishing treatment, I woke up on my back with a pool of sweat on my concave abdomen (did I mention that I had lost a bit of weight?). After a change of shirt and going back to sleep, I awoke later to the same condition. This happened three times during the night and by morning there were damp shirts hung all over the bedroom. It was unclear why it might be happening. My wife had recently had the flu and I was a bit feverish before retiring for the night so perhaps it was related to that. When it happened each night for the next week, it occurred to me that it might be related to the HEP C treatment. The heavy sweats have stopped, but in a milder form they have remained an event that occurs about 3 times a week.

It is not clear what the cause is. In my darkest moments, I remember that the symptoms for the onset of acute HEP C are flu-like, including fever, sweating and muscle aches. I felt some of them at the start of this round of sweats but it does not seem likely the sweating would have continued on for several weeks after the other symptoms disappeared. In talking to folks who have had relapses after treatment, they report that they relapse within the first month, which would fit the scenario, but they do not report having symptoms. It could also be related to stopping the other drugs being taken to alleviate the side effects of the standard treatment. Ambien was something I was taking every day for the final 2-3 months of treatment as sleep was not something that came easily or often. Ambien is not something that should be taken daily and even Dr. Sue had been more worried about the addictive nature of that than of any of the other drugs I was taking. There are some withdrawal symptoms that are noted for Ambien, but they do not indicate that they would go on for weeks after stopping. It could be that the long term use of interferon and Ribavirin has reset my internal thermostat. It always ran cold before as witnessed by the pile of covers on my side of the bed every night. Perhaps now it is more like my wife’s internal temperature gauge. She often sleeps covered only by a sheet on nights when I am swathed in blankets.

I hope it is something as benign as my body permanently running warmer than it used to. If nothing else, surviving summers in San Francisco will be easier if running hot, than if constantly cold. Until more evidence is gathered, the jury is out. In the meantime I am busy brainwashing myself that it is NOT because of any recurrence of HEP C.

Thursday, August 11, 2011

Money Saved Is Money Earned

In one of the last posts I did before I lost the energy to continue writing, I talked about the differences in care between a centrally administered health care organization (in my case the Kaiser HMO) and a health insurance model of care. One of the biggest differences is in the way drug prescriptions are handled. While under health insurance, the copayment for commonly prescribed drugs and drugs with generic equivalents was $15 for each prescription. Uncommon drugs or drugs whose patent had not yet run out or there were no generic equivalents available had much higher copayments depending on which supply store or agency you used. In the case of HEP C, the high-copayment drugs needed for treatment were Interferon (Pegasys), Procrit and Neupogen. My copayment for each of these was $100 for a 4 week supply. These drugs had to be ordered many days in advance from an out of state specialty pharmacy that delivered them via express mail. When you added in Ribavirin, the thyroid meds, the Ambien for sleep, Celexa for depression and the Vicodin for the weekly bought of muscle pain, the copayments added up to $375 every 4 weeks. During the 7 months of Standard of Care treatment while covered by health insurance the grand total was roughly $2800 in copayments for the meds.

Under the Kaiser HMO model of care, it is very different both in cost and the ease of getting the necessary meds. Kaiser has all the drugs available through their pharmacy. The is no longer any need for ordering interferon, Ribavirin, Procrit and Neupogen through an out of state mail order pharmacy; a pharmacy that had to send the stuff in an insulated carton with freeze packs and once mistakenly sent the meds to Canada. It can now be picked up at the local Kaiser pharmacy without the necessity for ordering many days in advance to make sure all the necessary approvals are in order. Kaiser also considers a standard order to be larger for some of the drugs than do the health insurance people which means there is more bang for the buck. The copay for the Ribavirin, Celexa, thyroid meds, Ambien and vicodin are still $15 but the prescriptions are for greater numbers of pills each. The interferon, Procrit and Neupogen all have a $25 copayment. In the case of the interferon and Procrit it covers a 4 week supply, for the Neupogen it covers an 8 week supply. Thus a 4 week supply of the necessary meds adds up to about $120. The savings amount to about $1500 for the length of treatment done while at Kaiser. This is not a trivial amount for the folks in my pay grade.

There are a lot of other differences large and small, good and bad, between the two methods of supplying health care and I hope to go into them more in the near future. This difference however, is nothing but good. $1500 saved covers a full month of expenses in my world and that is the same as $1500 earned.

Wednesday, August 10, 2011

The Disability Two-Step

Applying for Disability as mentioned in an earlier post, should be a relatively straightforward process. Contact your doctor and tell them you would like to go on disability and give them the reasons you feel it is necessary. With Hepatitis C, it is generally pretty standard for your doctor to have a very clear idea of what you are going through and why disability would help. You contact the state for a form, fill it out, take it in to your doctor, they fill it out, it is mailed back to the state. Then the state contacts your employer to confirm that you work there and what your salary is. You are sent a notification of the amount of money you will receive and within a few weeks of the start of your disability period, you begin to receive your benefits. Like all purportedly simple processes, the difference between the ideal and the real, the concept and the reality are far different. Such was the case with my claim as well.

After being advised by my friend Dr. Sue that I should go on disability, I approached my Human Resources department to get some basic information. They described the process, exactly as above, and that was the only thing they got right. They informed me that I would get between 75% and 95% of my normal pay but that I had to use up all my sick time before my benefits could start. Both of these statements were wrong. California SDI pays you 55% (in my case that meant $492/week) of your standard pay up to a maximum of $975 per week. So if you make $150,000 per year you would still only get $975 week. However, the benefits you receive from SDI are tax free, which makes them stretch further. You do not have to use up all your sick pay, if your employer grants you any that is. You only have to inform them if you are using any of it during the term of your disability claim. The HR folks also did not know what the status of my health insurance would be during the term of my disability. The moral here is check out everything for yourself, the professionals paid to assist you in these matters may not know what they are talking about.

I filled out the forms and took them to my doctor. He filled them out and they mailed them in to the state. The disability benefits start to accrue 9 days after the last day you work. I put down that my last working day was the 23rd of April. I also told them that I would be using 6 days of paid sick time to bridge the gap between my last day of work and the date my benefits began to accrue. This was fine with them and the said my benefits would start to accrue on May 1. The first payment would come 14 days after the benefits started to accrue. On May 2nd I received my official notice from the state of the amount of my benefits. Things seemed to be moving along well. On May 12th I received a notice that my benefits were not going to be granted and I could file an appeal if I so desired. The heartburn started on the spot. I called the included number and the courteous state employee told me that the notice of denial was a standard form they sent out when they had not yet received all the necessary paperwork. They had attempted to contact my employer 3 times by phone to no avail and had sent a form to them to fill out but had not yet received it back. He then told me to file an appeal to protect my rights and contact my employer to find out what was going on. I contacted them and was told that the form had been sent to the state the day before and they had no record of any phone calls about the matter.

A phone call to the state 5 days later to find out whether the form had arrived yielded the information that it had not. A different, but equally courteous, state employee said that employers failing to send in paperwork was the single biggest problem his agency had in processing claims. He said that the second most common problem they had in claim processing was doctors filling out the forms in completely unreadable handwriting. He mentioned that it was not uncommon for forms to be handed around the entire office in an attempt to find someone able to decipher what doctors had written on claim forms. He also said that filing an appeal was something I should do immediately. I filed an appeal that afternoon.

Two days later another courteous state employee called to inform me that they had received my appeal but still no paperwork from my employer. He then took my employment information over the phone and after asking me to swear that it was correct told me he would process the claim that afternoon. Seven days later I received my first payment. It was 25 days after my last day of work.

The form of the payment itself was another slight curveball. Rather than pay via check or direct deposit of funds into a bank account, the state of California now provides people who receive benefits with a debit VISA card. The disability account attached to that card is replenished by the state every two weeks with your payment. This is ostensibly to provide those without bank accounts an easier way to access their funds than taking a check to a check cashing shop. For anyone with a bank account it involves transferring money from the card to your account in order to pay your bills. VISA, of course, extracts small transaction fees for the various money movements. I can just imagine the VISA lobbyists talking to the state bureaucrats to get them to make this change. How many dinners, free trips and outright bribes did it take to get this deal done? Who knows, but credit VISA for seeing it through.

Things went swimmingly right up until I was about to finish up my treatment at the end of June. I contacted my doctor to confirm the end of my disability term and was astonished to hear that it was over on July 1. After asking how a patient who had been in treatment for 18 months and for whom the side effects were severe enough to eventually require a stint on disability could be considered fit to return to work full time 24 hours after the last dose of their treatment medication, they averred that they have made a mistake. After running some more forms back and forth and sending them in to the state, an extension till August 1st was granted.
An issue of primary importance when considering disability is what the status of your health insurance will be during the time you are disabled. Your employer is not required to pay your health insurance. They may if they choose, but they do not have to. My employer cut off my health insurance and offered my COBRA while I was on disability. Given that COBRA payments would have been in the neighborhood of $750 per month, it would have used up about 35% of my benefits just to pay health insurance. Without health insurance I could not afford to continue treatment, so this is a crucial consideration. Luckily, my wife has health insurance under which the spouse can be covered. If this had not been the case, I could never have taken advantage of the disability benefits on which I had been paying premiums the past 10 years.

Disability is definitely something that anyone in treatment should look in to if it is available to you. The rest you get helps your mental attitude, you physical condition and leaves you in far better shape to survive and prosper from your treatment. Treatment can be brutal and disability benefits can relieve some of that brutality for you.

Monday, August 8, 2011

Writing Checks My Body Can’t Cash

I was tired all weekend and am tired today. It appears that while the old mind thinks that I can work full-time with no problems, the body is more difficult to convince. There are a number of reasons that contribute to this fact.

The first is that 18 months of interferon and Ribavirin just wear down your body. It is hard to understand just how pervasive that effect is until you try to return to your old activities. The body has to get used to the idea that it can do these things again. It also has to continue to rid itself of the toxins built up over the months of treatment.

Another is that the months of treatment that wore down the body also brought about an enormous lack of energy. This created a situation in which it was extremely difficult to exercise. Walking, stairs, lifting and carrying all leave you so exhausted that you have no incentive to keep attempting to be physically active. So the muscle you have left atrophies and leaves you weak as a kitten.

A third is that recovery from the anemia brought on by the Ribavirin is much slower than expected. A month after finishing treatment and even though I have been injecting Procrit weekly, my hemoglobin is only at a little over 11. Given that it was at 15 at the start of this whole shebang, there is still quite a ways to go to get back to normal.

Finally, as I mentioned a bit earlier, I am genuinely weak as a kitten. A week after I stopped treatment, I began to do some light exercise to try to build up my strength and muscle tone. The amount of various exercises that I could (or more accurately, couldn’t) do was astounding. Just to give the most embarrassing example let’s consider lunges. These are the exercise in which you step forward with one leg, drop the opposite knee down until it touches the ground and then straighten up. I could do 3 on each leg or six total. In all the years I have ever done any of these sorts of exercises it was always possible to do 10 on each side or 20 total even when my condition was terrible. The worst part was that after doing the 6 I could do, my legs were stiff the next day. Yes, I just turned 58 and have had a long bout of drugs but still, that’s damn disappointing.

All this contributes to the fact that 5 full time days equals a full time weekend of rest and even then there is not enough time to revive.

Friday, August 5, 2011


At the end of Hepatitis C treatment on June 30, 2011 I weighed 166 lbs. (75 kilos), a loss of 35 lbs. (15.5 kilos) from my weight before the trial started. Granted, my lovely wife had been assiduously packing the weight on to me before the drug trial began so it wasn’t as if I lost only muscle, but still 15% of your body weight is nothing to sneeze at. The great majority of the weight loss, 25 lbs. (11 kilos) came in the first 5 months of the drug trial. It held steady for the first 6 months of standard treatment, then there was another quick 5 lb. drop. It plateaued again for another 4 ½ months and then there was another steady 1lb. per week drop till the end of treatment. It was as if the body dropped weight until the metabolism adjusted to the drugs, then held steady until the drugs broke through the plateau then dropped more weight until another adjustment was made and balance was achieved again.

The first week after I finished treatment was the same as being in treatment. My weight was steady, my appetite was suppressed, my energy very low. After about 10 days, it was as if a switch was thrown in my metabolism. I was hungry constantly. Breakfast in the late morning (I was trying to bring my sleep cycle into line with the rest of the world and not having a great deal of success), then a sandwich an hour later. Some sort of lunch at around 2 p.m. and again something to eat ever hour or so until supper; after supper, more grazing until bedtime. I even woke up hungry in the middle of the night and had to eat an apple or banana so I could get back to sleep. This continued day after day for about 2 weeks. I was astonished at how much I was eating after 18 months of trying to convince myself to eat anything. The only problem was that my diet hadn’t made a change from the on treatment period. My doctor had encouraged me to eat whatever seemed appealing in order to keep my weight up. This meant ice cream, baked goods, cheese etc. The problem now was that these foods were being consumed in large quantities. Two weeks after the eating began, I had gained 7 lbs. (3 kilos). That’s a lot of weight, especially when you look in the mirror and realize it went straight to your abdomen.

Some changes were made to the diet after that realization, cutting down on the ice cream especially and trying to manage the urge to eat. I am down to 3 meals a day without much between meal eating, but am still eating a great deal more at each sitting than during treatment. One month after my metabolism decided it wanted food again, I am 10 lbs. (4.5 kilos) heavier than at the end of treatment. My head likes to believe that the weight gain has begun to change to muscle instead of fat, but convincing my waist of that is a bit harder to do. Still, it is a wonderful thing to enjoy food again. There is nothing like enjoying fresh tomatoes on lettuce and toasted bread, grilled ribs, asparagus and a wonderful ripe peach. This sort of talk is making me hungry again and luckily it is just about time for dinner. So on that note, I will sign off and fulfill my task of gaining more weight. It is a difficult job, but someone has to sit down and do it.

Thursday, August 4, 2011


We went down to Los Angeles around April 1st this year for my fantasy baseball draft. We always follow the auction with a stay at our old friends Carol and Steve’s place in Santa Monica. While we were whiling away the weekend in the backyard (we might have done something else but I was too tired to do much of anything except whiling time away) our friend Sue came by to hang out. Sue is a doctor and works at a public health clinic. She has a lot of experience with chronically ill patients. After about a half hour of general chat, she turned to me and asked if I had ever considered going on disability. I told her I had been thinking about it, but hadn’t formally started the process. She said that she thought it would be good for me to do it. It seems my life had narrowed down to work, disease and sitting at home. She did not see that as a life and told me that disability would allow me to rest, be in better condition to help my treatment, and allow me to do some of the things that made life worthwhile. My wife agreed with her completely and between the two of them had convinced me to start the process by the time the weekend was over.

The process is relatively straightforward. You get a form from the state, fill it out, give it to your doctor to fill out and sign, and send it in to the state offices that handle disability. They contact your employer to determine if you actually work there and what your pay is and a certain number of days after your last day of paid work, you begin to accrue your disability benefits. They send you a check every two weeks once you have been accruing benefits.

State disability insurance or SDI is a short term program that is administered by the state and paid for by insurance premiums that are taken out of your pay. Therefore it is administered by the state and bound by state regulations. It can last up to a year. If you are disabled for longer than that you switch to Federal Long Term Disability that is administered by the Social Security Administration. For HEP C it is a standard process because HEP C is one of the conditions that are covered in the state regulations. Your doctor can just write in the definitions from the state manual on your form and it will be processed routinely. This is not to say there won’t be screw-ups, because there will, but at least you will be fixing problems in the process and not be trying to convince the state agency that they should be covering a non-standard condition. The bumps on the road to my approval will be discussed in an upcoming post.

I stopped working on April 23rd and started accruing benefits on May 3rd. It made a world of difference. I was able to rest. I slept 11-12 hours a night the first few weeks and took naps in the afternoon. I was able to get out of the house for brief excursions. I didn’t have to deal with the stress of work wearing me down. As I was mildly to seriously anemic during the last several months of treatment, being able to rest was hugely important. Dr. Sue and my wife were right, it definitely helped make life better and treatment easier to handle. I wish I had done it sooner. If I had, I might be less exhausted now that I am back to work.

Wednesday, August 3, 2011

World Hepatitis Day – Who Knew?

Thursday July 28, seven days ago, was World Viral Hepatitis Day. The day was dedicated to raising awareness of all types of viral hepatitis and the populations they affect throughout the world. Did you know it was happening? If not for the efforts of the San Francisco Hepatitis Task Force, no one in my city would have known, myself included. Were it not for an email sent out by the task force recruiting volunteers for some boots on the ground outreach at transit stations in the city, it certainly would have passed me by. As it was about 50 hardy souls wore t-shirts, held up banners and handed out information cards during the morning and evening commute hours. Over 2500 cards were passed out during the day and thousands of other folks saw the signs and heard our pleas that they find out about HEP C and get tested. We tried out numerous catchphrases such as: “Do your liver a favor, get tested,” “Seven out of ten people don’t know they have it,” “We never thought we had it,” “If you have a tattoo, you might be infected.” “I never knew I had it,” etc. I irresponsibly came up with a few others such as “If you have a tattoo you are already dying,” “If I have it, so could you,” “Don’t die not knowing what killed you,” “What you don’t know can kill you,” and others. Anything to break through the iPod, cell phone and traffic noise clutter. It was a worthwhile though exhausting effort but it left me wondering why we don’t have better outreach about Hep C.

If you remember the beginning of the AIDS epidemic, the gay community did a fantastic job of organizing to demand research about the disease, research about a cure, better treatment by medical professionals, and fairer treatment for infected individuals. They had the same problem as the HEP C community in that AIDS was seen as a disease that affected mainly people who the mainstream of society saw as deviants. With AIDS the victims were defined as promiscuous, drug using men who engaged in “perverted” behavior. With HEP C victims are seen as drug using losers. (There is a rumor in San Francisco that the local Hepatitis B community decided not to ally with the HEP C community in a previous outreach program because they did not want their cause associated with drug use.) The AIDS community worked hard and eventually triumphed over that stigma (though suburban white folks starting to get the disease via contaminated blood certainly moved America toward the realization that the disease was not the wrath of god, but rather and dangerous virus). They now get vastly more attention than the HEP C community even though there are 4 times as many HEP C sufferers as people infected with HIV/AIDS. Our community of infected people needs to start becoming a lot more aggressive in publicizing HEP C and the fact that is one of a family of viruses that can infect people who have never used drugs or indeed engaged in any behaviors mainstream Americans look down upon.

We can certainly learn some lessons from the AIDS community and lose our apathy, shyness or indifference. It is the only way we are going to get the treatments for HEP C widely distributed at an affordable price so we can save the lives of people who don’t need to die from HEP C.

Tuesday, August 2, 2011

Speed Bump On The Road Back

Just in case I didn’t get the memo that it was going to be a long slow road back to full mental functioning, there was a reminder for me this morning. We had ordered a Chicago-style pizza for dinner last night and, as expected, there were leftover slices after we gorged ourselves. The plan was to take one of these massive wedges of dough and cheese to work for lunch. A good plan: easy, quick and needing minimal effort in the morning to prepare. Things did not quite work out that way.

I got up, did my stretching, drank my green tea (this is California after all) and took out the container with the pizza and set it on the counter. After a quick bathroom break, I returned to the kitchen and realized lunch still needed to be made. After moving aside an annoying plastic container, I laid out bread, cheese, roast beef, tomato and lettuce. Just at the point of finishing the sandwich and putting it into the waxed paper bag, I looked down and saw the pizza sitting right there on the counter were it had lain, forgotten (indeed, even shoved aside) during the process of making the sandwich. It turns out that my brain is just as capable of being distracted and forgetful 4 weeks after finishing treatment as it was during the height of treatment. You could say that there is nothing like the feeling of foolishness that accompanies this sort of brain lock, but I have felt it so many times during the past many months that it has become all too familiar. Here’s hoping that the brain fog starts to burn off in the near future.

The silver lining was that the pizza was just as good for dinner as it would have been for lunch.

Monday, August 1, 2011

Coming Back To Life

I finished my course of treatment for Hepatitis C on June 30, 2011. The last 6 weeks were particularly tough with bouts of nausea, some dizziness, decreasing red blood cell counts, consistent exhaustion and increasing mental fog. Eighteen months of interferon and Ribavirin apparently do a number on us humans. The good side is that at the end of the treatment cycle, the viral load was undetectable with negative viral activity. Now we wait for 6 months until January of 2012 for the follow-up test to determine if I have stayed negative and thus qualify for having a true Sustained Viral Response or SVR. It brings to mind the song from the Mel Brooks movie “The Twelve Chairs” with the chorus:

“Hope for the best, expect the worst
Some drink champagne, some die of thirst,
No way of knowing which way you’re going,
Hope for the best, expect the worst.”

By the way, did you know that Mel Brooks wrote the music and lyrics for the songs in his movies.

So we are hoping for the best over the next six months (though the thought that the next test occurs in 2012, the year of the end of the world certainly tempers the enthusiasm).

We return to the subject of the post after that small digression. On about the 8th or 9th of July, I was lying on the sofa catching up on the episodes of “Mob Wives” I had missed, when I thought about unloading the dishwasher and tidying up the kitchen counters. For months, this sort of urge was met with the thought that it could be put off until later that night or tomorrow or to some indefinite time in the future. But on this occasion, I arose from the sofa, walked to the kitchen and actually unloaded the dishwasher and wiped down the counters. It was the first sign that some mental and physical energy was returning. Over the next few days, I began to do a bit more. It was a great feeling to experience energy as opposed to lethargy. It genuinely felt like I was rising from the depths back to life. It’s going to be a long, slow struggle back to normalcy by all accounts, but as the old saying goes, “every journey begins with a single loading of the dishwasher.”