Health Care versus Health Insurance

When last I wrote, I was just about to institute a change from the good people at California Pacific Medical Center (CPMC) through Blue Shield insurance to the Kaiser Permanente Health Maintenance Organization. Our organization changed its insurance policies and the only affordable option was to go with the Kaiser HMO. From my first appointment with my new Primary Care Physician (PCP) it was clear that Kaiser’s approach is very different from standard insurance. It is the difference between a Health Care Organization and a Health Insurance Organization.

I made an appointment to see my new PCP - which appointment I was able to get for only two days after I called. I picked my new doctor from a roster of available doctors because she had been working in the Chinese community on some Hepatitis B projects and thus was already familiar with Hepatitis cases. When I went in to see my PCP, I brought along my lab reports and health summary updates from my doctors at CPMC. I gave her my data and she began asking questions and typing lots of information into my medical record via the computer in the examining room. My biggest single concern was making sure that my meds, which were running low, would be able to be continued and that I would not miss doses in my treatment regimen. She started entering in my various medication and doses, checking instantly to see if the same drugs were available and in stock at the pharmacy. On her own authority she was able to prescribe all my meds and send the prescriptions through to the pharmacy via computer. This included pegasys and ribavirin as well as the thyroid medicine, the antidepressant and the sleep aids. You could have knocked me over with a feather. She then forwarded my records over to the gastrointestinal department and told me that someone would be calling me that afternoon to go over my information and set up an appointment. She also made instant referrals to the psych department to set up a neuropsych evaluation as per Dr. Bzowej’s recommendation and to some various other departments to handle some other health issues unrelated to the Hep C. This all happened in a 40 minute appointment in which, despite her working at top speed – especially in data entry, never felt rushed. She then gave me her card with email and phone contact info and told me to call her with any further questions. I walked out of the appointment in shock.

Compare that to what Blue Cross (or Blue Shield, Healthnet, Aetna – I’ve had them all over the years) would have done. I would have seen my PCP. They would have had to write a referral to a Hepatologist. The referral would have to have been approved. I would have seen the Hepatologist. That doctor would have had to prescribe the meds I need for treatment. The prescriptions would have had to be approved by the insurance company. I would have had to go through a specialty pharmacy to get the meds. I have no idea how long that might have taken even if there was an attempt to expedite the process due to my ongoing condition.

It is all due to the difference in business model that each type of organization has. Kaiser’s model is that I pay a monthly fee for my health care. They make money (they are a non-profit corporation, but they need to at least break even for all this to work) through efficiency and by rationing care. If you are seriously ill they are on the job, if you have a sore throat you had better have had it for a long time before they are going to set you up with a doctor’s appointment. The whole implementation of computerized records and paperless referrals means that they save beaucoup bucks in paperwork costs. They also are proactive with immunizations and diagnostic tests because they are aware that early detection of disease means that treatment is easier and cheaper. They have their problems to be sure, but they offer good care.

The insurance company model is that you pay a monthly fee for insurance against illness. They make money by limiting your care. They do this by making referrals and authorizations for treatment difficult to get. They also are very careful in how much they pay to doctors and hospitals for treatment and frequently deny payment or portions of payment for treatment. They are less likely to emphasize preventive care because that costs money out of pocket and you might never get that particular illness while insured by them. On the other had they offer considerably more flexibility in whom you can see and where you can see them for care.

Going forward will be an interesting journey, but the first experience has been very good and at least I was able to continue uninterrupted treatment.

P.S. The gastroenterologist really did call me back that afternoon and he set up an appointment for only three days later…

More Dread – Heath Insurance Woes

Insurance Plan Change Forces Change Of Doctors

The new year continues its run of good news as I found out that none of the health care options (the ones I can remotely afford anyway) that are available to me under our organization’s new health insurance plans, allow me to continue with the team that has been currently treating my Hepatitis C.

As several of the recent posts have detailed, our organization changed its health insurance broker and plans for the upcoming year. In order to save money (and I can’t really argue with this as the insurance costs for the organization have risen 40% for this year), they subscribed to Blue Cross “Select” and Heathnet “Silver” insurance plans in addition to the standard Kaiser Permanente plans that have been offered for years. While initial and even follow-up research indicated that my doctors were contracted with both Blue Cross and Healthnet the final determination that came through the brokers was that, while they are contracted to both Blue Cross and Healthnet, they are not contracted with the two stripped-down plans that our organization subscribes to. I could subscribe to a PPO that includes my doctors, but the monthly cost would total more that $4,000 per year, plus the $4,800 in yearly drug co-payments, plus very high deductibles on any medical procedures and hospitalizations that might occur and I just can’t afford to pay those kinds of fees on my income here in one of the most expensive cities in America.

On the positive side, I still have health insurance. It will be through Kaiser Permanente and will be funded by my employer. Kaiser does good work and has good doctors. Even the treatment nurse who has been handling my care at California Pacific Medical Center, was hired away by Kaiser and he is top-notch. The only problem is whether I can manage the transfer of my treatment to Kaiser during the relatively small window of time until my prescriptions run out. I have to get a primary care doctor, have him refer me to a hepatologist, have my records transferred and have my meds continued during a time period of about 20 days. I get to find out how much stress and complication I can handle with a Swiss cheese brain and a 30-day supply of anti-depressants. But that’s the modern world we all have to cope with, so the best thing to do is buckle down and dive in, to mix up some metaphors.

There are lots of people in much worse shape than I am. There are folks with the disease and no health insurance who depend on the largesse of drug companies or aid programs. There are people on waiting lists for liver transplants that are watching their window of opportunity close on them. There are people even with health insurance who are paying huge chunks of their income or going into debt to get access to treatment. I am in none of those positions and I appreciate that more than I can say. I would just like to get some good news at the start of the year. Maybe the Giants will trade for a right-handed bat, the Niners will sign a quarterback, or the Warriors will make the play-offs. I can feel my immune system recharging already.

A Creeping Sense of Dread

Holiday Stress Equals Erratic Meds


I’ve been in treatment for 57 weeks and have been negative since the end of September, but I am approaching my upcoming viral load test with a great deal of trepidation. The month since the last test has been very difficult. The holidays were not a happy time for my wife and I as there were job problems, family problems and the general high stress levels that the holidays can bring.

The combination of all the stress with my growing inability to concentrate and remember resulted in my missing 3 afternoon doses of my meds during the 10 day period following Christmas. This makes me very edgy as it was the combination of skipped interferon and lowered Ribavirin doses that led to the viral breakthrough that bounced me out of the RO5024048, RG7128 study last June.

In this case, I did not miss any interferon doses, but I did miss 3 partial doses of Ribavirin in a relatively short period of time. This was effectively similar to the lowered Ribavirin doses of late May before the breakthrough. Ribavirin by itself does not seem to have a strong direct antiviral effect on the Hep C virus, but it does contribute a great deal to continuing to hold the virus in check once the interferon has pounded it into undetectability. Therefore reducing the dose, whether deliberately or through simply forgetting to take the drug, can have a significant negative effect on continuing to be undetectable.

The strange thing is that I cannot remember forgetting to take two of the doses (I realize how silly that sounds given the state of my brain by this point but nonetheless…). I can only remember the sick feeling of getting up the next morning, going to take my meds and finding the closed container labeled Monday p.m. that still contained my previous evenings dose. It was bad enough the first time, but two days later on Thursday, exactly the same thing happened. I thought I had done my duty, got up the next morning and found the container with the dose on the table. I knew that it was serious, that I had to stay on schedule and yet I had forgotten again. The thing that knots your stomach is the knowledge that you have screwed up and you can’t go back and make it right. The opportunity to stay on the schedule is gone and the best you can hope for is that it hasn’t compromised your treatment.

Several days later, I missed the third evening dose. This time I figured out what happened and decided that yet another behavior modification was necessary. I went to take my evening dose, sat down and opened the container with the meds in it and then my cell phone rang. It was someone to whom I rent space in my studio so I took the call. It took a while to figure out the problem and by that time I had forgotten to take the dose. However, since I had specifically gone into the room to TAKE the dose, when I thought about it later that evening, I confabulated the memory of actually taking the meds. Again, the increasingly sick feeling in the morning when I found the open but full container on the table. I decided at that point that I would immediately take my doses the moment I thought of them from that point on and it has worked excellently since then. It doesn’t matter if the phone rings, my wife is talking to me or I have to run to the bathroom; when the thought of my evening dose crosses my mind, I get up right then and go take it.

I cannot stress enough the importance of keeping your dosing schedule (your doctors, nurses and everyone else all stress the same thing, so I know I am preaching to the choir). If you have to put signs all over your home, rubber bands on your wrist or tattoo it to your forehead; do whatever it takes to stay on your schedule and not miss a dose.

I hope it doesn’t screw me up, but it was a bad end to last year and a tough start to this one, so I am looking at this test the same way you look at the door into the dark basement in the horror movie – don’t go down there and don’t split up.

Heprat’s Coverage Is In The Health Insurance Twilight Zone

The following story is sadly not unique to my situation.

The phone call came from the HR director of our organization. He told me that our health insurance broker had called him with the information that my primary care physician (PCP) only had a contract with Anthem Blue Cross (world’s scariest health insurance company) as a specialist, not as a primary care physician. Therefore I would have to find a new PCP. I had been going to my PCP for 12 years through 4 insurance carrier changes. For the entire time he had been affiliated with a physician group that has contracts with every major health insurance company. Something did not smell right about this ruling.

My PCP had written all my referrals to specialists for my Hep C treatment. He had written several of the prescriptions for the drugs to manage my Hep C side effects. If I had to find a new one, the new doctor would have to get up to speed on my condition, reinstitute all my referrals and prescriptions and do it all by the 10th of January when my supply of Ribavirin would start to run out.

Heprat, man of panic and desperation, sprang into action. I called my PCP’s office. They told me in no uncertain terms that they had a PCP contract with Blue Cross as many of their patients had Blue Cross insurance. I went to the Anthem Blue Cross website, searched for PCP physicians within 2 miles of my home and my doctor appeared on their list of Primary Care Physicians. Not only that, but the doctor code for his PCP status was listed and it said that he had an open practice and was currently accepting patients. Armed with this information, I called the insurance broker for our organization. I explained my situation and they repeated that according to the website of the insurance broker they used, my doctor was only contracted as a specialist; they even went online and checked it while we talked. I told them that I was looking at the Blue Cross website and on that site it clearly stated he was a contracted PCP. I reminded them that the broker website they used for their information had been wrong about the Blue Cross drug formulary and wrongly stated that my hepatologist was not a Blue Cross doctor. They grudgingly admitted that the Blue Cross website might be more accurate than their broker website and agreed to resubmit the paperwork with the codes I provided them from Blue Cross. Now we wait on Blue Cross to process the paperwork.

The Ribavirin runs out on the 10th of January. The interferon runs out on the 14th of January. My thyroid medication runs out on the 9th of January. The Celexa runs out on the 17th of January.

I suspect my neighbors think I am either insane or being brutally beaten as I have spent several minutes the past few afternoons walking around the house and screaming. It sounds terrible but it really does help relieve the stress. For all of you out there in this same situation, I recommend screaming. It lets out your feelings and leaves you so damned tired that you don’t have enough energy for an anxiety attack.

Science Café About Hepatitis C Research

San Francisco has a thriving science and nerd community. A symptom of that is the wide array of science events that occur throughout the Bay Area every month. One of them is a monthly series titled “Science Café” in which a scientist or two is inveigled to come to a local café and talk for a few hours about their area of expertise. The most recent event was about Hepatitis C.

The Atlas Café was the scene and the scientists were Dr. Melanie Ott of the Gladstone Institute who researches the reproduction cycle of the Hep C virus and Dr. Todd Frederick a Hepatologist at the California Pacific Medical Center who treats Hep C patients. As a disclaimer I must mention that Dr. Frederick has examined, palpated and prescribed for me as part of the Polymerase Inhibitor study I was in.

Dr. Frederick gave an overview of the scope of the Hep C epidemic and the nature of current treatments available to combat it. He talked about the new protease inhibitors Telaprevir and Boceprevir that are awaiting FDA approval to be used in combination with interferon and ribavirin. He also gave a hint at possible future therapies using polymerase inhibitors with interferon and ribavirin and the possible combination of polymerase and protease inhibitors with ribavirin to create a treatment regimen that does not use interferon.

Dr. Ott gave us a basic yet thorough crash course in the reproductive cycle of the Hep C virus. She revealed its dependence on fat molecules in human cells and the promising area of research involved in using fat disabling compounds to interfere with the ability of the Hep C virus to reproduce itself. She also had a very cool animation that illustrated the reproductive cycle of the virus. She was quick to state that this was still basic, in the petri dish research and many years away from demonstrating efficacy in living organisms. It was fascinating stuff and the crowd of 30 was intent throughout both presentations.

A few of the questions asked in the Q & A were about the new compounds being developed and particularly about the issue of deciding whether to treat now or wait for new developments. Dr. Frederick clearly attempted to be balanced in his answers, but as a doctor involved in clinical trials of promising new compounds he is really exited about the possibilities of the new treatment combinations and he showed a bit of a bias towards waiting for new developments.

I respect Dr. Frederick’s viewpoint a great deal, but I think if you are seriously considering entering treatment, you need to consider a wide range of factors beyond the simple consideration of treatment outcome percentages. The condition of your general health, the condition of your liver, the amount of impact the disease is having on your quality of life, your family situation, your housing situation, your work situation, your insurance situation, your financial situation, the quality of support you can expect, all of these are important factors to consider in your decision. We still don’t know when the new drugs will be approved, how quickly they may be included in insurance company covered drug rosters, and how much they will cost (though we do know they will be expensive). So think it all through thoroughly and carefully before making a decision. While the future may be so bright we gotta wear shades, the shades might be very expensive and the future a bit further off than we would wish.

Going Camping With Drugs

Planning getaways and vacations while in a drug study or on treatment can be a bit of a challenge. As a primary concern, you need to plan your vacation around your dosing regimen, particularly if you have a regular cycle of side effects. For instance, if you have nausea or muscle pain or killer headaches at a predictable time after injecting your interferon you might want to wait to start your getaway until those effects have settled down. Who wants to be in a beautiful location feeling crappy if you can avoid that by timing your trip appropriately?

You also need to plan how you will ensure that you maintain your drug-dosing schedule. Depending on how long your trip will be and the number of drugs you are currently taking, you need to make sure you have the necessary amounts of drugs and the equipment to store them properly. If I am going to be gone for more than one week, I need to bring along (and have the proper coolers or refrigeration for) 2 doses of pegasys, 2 doses of neupogen and 2 doses of procrit. That is 6 syringes and enough cold packs to keep it cool for the necessary time frame as well as the appropriate number of ribavirin, celexa, folic acid and levothyroxine pills. And of course, the necessary sleep aids and painkillers should something flare up; do you really want to have insomnia in a tent, after all?

This is perhaps an over elaborate lead-in to our two day “camping” trip this past weekend. My wife and I met a number of old friends at a location called the “Coastanoan” on the San Mateo County coast south and west of San Francisco. It is a “low-impact” lodge development that has a couple of lodge buildings, a small number of wooden cabins and about 80 tent-cabins. A tent cabin, in this case, is a 10 by 12 foot (3 by 4 meter) wood-frame structure covered with waterproof, reinforced tent material. It has a bed, an electrical outlet, windows and a door. The facilities are in centrally located areas scattered throughout the campground and are the only heated buildings outside of the lodge structures. So, you have an unheated, semi-permanent tent like structure that you sleep in and you walk to the bathrooms and showers. They have outdoor fireplaces near the bath facilities and the usual barbeque and picnic areas. It is a short walk (crossing the highway carefully) to the beach.

I am describing all this so you realize that while it is called a campground you are not lying in a small tent, huddled in a sleeping bag with only a thin pad between your tender bottom and the cold ground. Oh no, you are on a futon in a full-sized bed with a HEATED mattress pad to keep you toasty through the chilly night. We were not exactly roughing it, but all those caveats I mentioned earlier apply.

I had to make sure I had injected 36 hours previous to leaving to make sure the majority of the interferon symptoms would be past. I had to bring all my other drugs and make sure I took them on schedule, not always easily when you are running around with old friends and their children. I also had to develop a plan of action to deal with the 3 to 4 trips to the bathroom I would be taking each night, and walking through the cold, foggy, damp night to the bathroom was not the plan I had in mind.

It all went remarkably well and served as a dress rehearsal for our 6 day trip next month to the higher and colder area around Yosemite. It all seems doable, but it requires extra planning and lots of extra blankets because the last thing you want is to catch a chill with a low white blood count.

I wonder if bears will break into cars to get Hep C meds…

Back on the Interferon Bandwagon

After a reduced dose of Pegasys two weeks ago and a skipped dose last week, I am back under the hammer, so to speak. The dose reduction was due to my neutrophils being below 500. The study doctors believed my neutrophils would rebound without the interferon pounding down the white blood cells. They were right. The number popped up to 1250 and they put me back on a half dose of Pegasys.

It is amazing how much you can forget in 20 days. While I had a lot going on the past few weeks what with the acclimatization side effects of the antidepressants and the new drugs I was taking because of it, nonetheless the number of interferon related physical symptoms that disappeared without my noting their passing surprises me.

I injected Thursday evening and that night I had night sweats and had to change my t-shirt twice. By Friday late morning/early afternoon I had the mild headache and general crappy feeling in the head that you feel when you are coming down with something. By 5:00 p.m. my muscles started to ache, especially in the butt area (How can you mindlessly watch TV while feeling crappy and sore if you butt is aching?). That night I had a generally stuffy head and by Saturday morning the middle of my back was stiff and cramping. I had my first wave of nausea around noon and I also had a sore spot in my breast but with my general clumsiness of late, it could easily be the result of my running into a door, or wall, or chair, you get the idea.

All of these symptoms had disappeared over the past 20 days. Their disappearance was accompanied by completely forgetting about them. I didn’t really even register the fact that I hadn’t felt nauseous in almost three weeks. That would seem to be the sort of thing that you might take note of.

I think this points up the importance of keeping notes about your general health, side effects and mental state throughout your treatment. It doesn’t have to be elaborate. Just a small notebook wherein you note how you are feeling generally and any unusual or unique effects you are feeling. It really helps to be able to flip through you notes and realize that a particular symptom or side effect or your general state of health and feeling is something that you have experienced before. The interferon really affects your concentration and memory and it is very easy to completely forget about something earlier in the treatment cycle that seemed it would be unforgettable at the time. So make notes and keep records. A little notebook of the history of your treatment can be a great friend to you when something seems to be coming out of nowhere, but actually happened to you in the past.

Hepatitis C and Fantasy Baseball: The Auction

I spent the last 5 days in (mostly) sunny Los Angeles. I was there for my fantasy baseball auction. This is an event in which grown men (mostly) pretend they are baseball general managers and buy a team of actual major league players. This becomes “your” team and you use the actual statistics they accumulate during the year to determine who wins your league.

I have been doing this for 25 years and have gathered a certain level of experience at it as well as a number of beliefs about how best to proceed at the actual process of buying players and assembling a team. A great deal of this accumulated wisdom (a tricky term to apply to this sort of experience, but there it is) had to be thrown out for this auction as the facts of Hepatitis C treatment intruded on the natural rhythms of the fantasy world.

The auction started at 9:00 a.m. on Saturday. I generally inject Interferon on Thursday night. I have determined that the side effects of the Interferon, both mental and physical generally start to hit about 14 to18 hours after the injection. They peak in the 36 to 48 hour period and then gradually lessen until the next injection. I delayed my injection until Friday night around 10:00 p.m. This would mean that the side effects would most likely start to hit from noon till 4:00 p.m. Saturday, I would have a solid 3 hours and possibly as many as 6 before I lost my edge, such as it is. I also realized I had to create a strategy that allowed me to buy most of my players before I started to feel physically sick and mentally spaced out.

One of the tenets of auction theory is that people involved in the auction tend to get caught up in the emotional intensity of the moment and pay too much early in the process. As the auction proceeds and people run out of money, bargains can be had if you are patient enough and a canny judge of talent. This requires concentration and attention over a several hour process. Hah! I say. The side effects timing I mentioned above make that kind of long term concentration impossible, at least for this particular patient. The strategy I devised was to choose actual players that I wanted on my team and buy them in the auction no matter what the price. I made educated guesses as to how much all the available players would be expected to cost. Within those general guidelines, I chose players that would fit my budget and help my team. I went to the auction intending to buy mostly those players and thus I would not have to concentrate on every player just the ones I intended to buy.

It worked far better than I expected. I needed to buy 15 players to fill out my team. I managed to buy 12 of the players I had picked before the auction. I only had to fill 3 positions from the general group of players. The down side to this success is that I have no one to blame but myself if my team is awful.

I was a good thing it worked because, like clockwork, the nausea hit at about 1:30 and I really noticed my concentration lagging from about 2:00 p.m. on. By the time 3:00 p.m. rolled around and the auction was over, I was spent.

This is all really just an example for any specific event or activity that you do while you are undergoing treatment. Successfully completing activities, classes, or special events and occasions is all about planning. Determine what your own body and mind are capable of for given days and time frames and plan your involvement with activities around those capabilities. If it means that you change the way you normally or traditionally do things, make those changes. It will mean all the difference in your enjoyment of the activity or event and your success in completing it. You are the only one who knows what your capabilities are and you are the one who needs to both plan for those capabilities and let others know what they are. This way, no one is surprised and/or disappointed by the level of involvement you can bring to an event.

By the way, the 2010 Black Shadows team is:

John Baker C Florida
Miguel Olivo C Colorado
Adam LaRoche 1B Arizona
Brandon Phillips 2B Cincinnati
Ryan Theriot SS Chicago
Freddy Sanchez 2B San Francisco
Mark DeRosa 3B San Francisco
Jeff Baker 3B Chicago
Jay Bruce OF Cincinnati
Shane Victorino OF Philadelphia
Conor Jackson OF Arizona
Marlon Byrd OF Chicago
Garret Jones OF Pittsburgh
Scott Hairston OF San Diego

Wandy Rodriguez SP Houston
Barry Zito SP San Francisco
Aaron Harang SP Cincinnati
Brett Myers SP Houston
Tedd Lilly SP Chicago
Paul Maholm SP Pittsburgh
Chris Volstad SP Florida
David Bush SP Milwaukee
Jeremy Affeldt RP San Francisco
Sean Gallagher RP San Diego
Sam Gervacio RP Houston

Good Days and Bad Days

Before I started treatment for Hep C, I did not give a lot of thought to Good days and Bad days. I certainly had good and bad days and they were straightforward to identify. Fight with my wife, Bad day. Finish a piece of art, Good day. Stuck on the bridge because of an accident, Bay day, the two starting pitchers on my fantasy baseball team that day both win and throw shutouts, Good day, etc. etc. But the majority of days were just days, some good elements, some bad elements, a lot of generic, average elements. That all changed with the onset of treatment.

Much of the advice that you get about how to approach treatment, how to manage it and how to respond to it, involves not letting it take over your life. You have to continue to live your life as much as possible, that is why you are undergoing treatment, to have your life be about your life and not about your disease. But invasive drug therapy for any disease for which it is required, has a way of making that difficult. Some therapies are periodic and regular. You go in for chemo once a week, or radiation for a few times a week for a month, in other words, a regular defined pattern of treatment. With Hep C, it is a defined treatment regimen, but there is both a daily and a weekly portion of the regimen and the total treatment generally is a minimum of 48 weeks. The weekly interferon injections build up over time to eventually give you a high constant serum level of interferon and the daily Ribavirin keeps that drug at a steady serum level as well. This creates a situation that gives you a constant set of side effects that do not fluctuate in the same way as someone who gets a chemo dose once a week. The side effects may vary individually on a daily basis, but the fact that you will be feeling side effects every single day is constant throughout the length of the treatment.

So you get attuned very quickly to Good days and Bay days. Nausea and dyspepsia, Bad day; Walking up stairs without gasping at the top, Good day; Feeling some energy and enthusiasm, good day; realizing that you said a total of 10 words to your co-workers over the course of the day, bad day – these things become signposts of your days and can easily begin to take over how you feel about your life. You can find yourself sitting inside at home instead of getting outside for a walk or talking to a neighbor or calling your sister or any of the vast number of things that can keep you connected to your life.

A Bad day with the treatment does not a Bad day make. You can have nausea and cramps for most of the day and have a wonderful conversation with an old friend in the evening that makes any day a Good day. You can feel exhausted and breathless and then pick up some take-out food and a movie and have a wonderful night with your family and have a Great day. You can also screw up a day when you are feeling physically good and mentally sharp by having a verbal dustup with a coworker.

This is all very uplifting and such, but the reason I am musing about this is that having the flu on top of Hep C treatment, is a Bad day. And the Bad day lasts several days. I have spent whole days inside the house on weekends when I was dealing with interferon doses but at least felt like I could leave the house. I felt that it was somehow my choice that I was a hermit, that I could get out if I had enough juice, a good reason. When you have the Flu, you don’t really go out unless there is not choice. I don’t want to be the typhoid guy who infects everyone so I don’t go out. This drives me crazy in normal flu years, but given the fact that exhaustion from the Hep C treatment has given me more days in the house than normal this winter and it really feels like a run of Bad days.

But hey, I am about to send an email to an old friend about visiting on Easter weekend, and I will be calling my mother after that. I am trying not to have my life defined by my treatment, but it can certainly creep up on you quickly if you let down your guard.

When baseball season starts, that will solve everything (really, everything). How bad can a day be when there are box scores to read and games to listen to on the radio? The baseball diamond can be a strange place to see a pattern to the universe, but it’s as good a place as any.

Up, Down, All Around

There are ups and downs to this research regimen. Yesterday, I went in for my 12-week tests. I am finishing the experimental drug tomorrow. They needed to determine how fast the drug disseminates into the bloodstream, so the time of the testing was controlled so that they could take blood samples at specific times after I had taken my dose of the meds. None of this is a particularly big deal, it just means a bit more time and a few more questions to answer. It is interesting to note that, despite the attempts to make these tests consistent and rigorous, the human error factor rears its head from time to time. In previous visits, they have forgotten to take my weight, in this test they took my weight, but forgot to take my blood pressure and temperature. I’m sure somebody got a ding for that as they have been quite concerned about the state of my blood pressure throughout the project thus far.

I came in to this visit with a sore throat and told AVB that I had the sore throat, some coughing and nasal stuff. We also discussed the side effects, which ones were decreasing (itching, general cough, irritability) and which were either steady or increasing (fatigue, shortness of breath, muscle weakness). I then went off for the blood draws for this round.

They took 17 vials of blood. The blood guy (who has been drawing my blood for several visits now) estimated that it was from 18-20 ounces of blood. This is roughly the amount that they have been taking since the beginning of the test. So they took about a pint at the start of the test, at weeks one, two, four, eight, ten and twelve or roughly 7 pints of blood in 12 weeks. Despite their claims to the contrary this has to be stressing all my systems. This is a lot of blood to be replacing in normal circumstances, but given that my red cell and white cell producing systems are both being suppressed by the Interferon and Ribavirin as well as some additional white cell suppression by the RO5024048 Polymerase Inhibitor, I can’t believe it is without consequences.

I think I am living them now as the sore throat and developed into a full-blown flu-like outbreak last night and today. Mild fever, productive cough, sore throat, all the delights of flu. Sure I could have developed this anyway, but somehow having over a pint of blood withdrawn just while it was coming on seems like it must have contributed to the onset. Who knows? I did get vaccinated for both strains of flu this year and that has to help, but I think that if the timing of all this were different, I might have a milder case of this. In any case, I’m going to delay my Interferon injection for a day to give my immune system a bit of help before dosing it again with an inhibiting agent.

The good news: Still Undetectable. It is now officially 3 taqman tests showing undetectability. This is great news and I will celebrate accordingly when the flu goes away. Really, I promise.

Testing, Testing, Testing

I went in today for a retest of my Neutrophil count. This endless testing is beginning to wear. Since the start of the Study, I have been in for Baseline testing and week 2,4,6 and 8 testing each of which involved drawing 10-16 vial of blood. I have also been called back for retests my Neutrophil and Hemogloblin levels after the last 3 tests. I have been to visit these guys 8 times in 9 weeks for various testing.

I am extremely lucky that I live in San Francisco. At least one of the test subjects lives in Eureka, which is a good 5-6 hour drive from the Bay Area. I can only hope they have not had to have any retesting, or if they have, that Roche has contracted with a lab in that general area to do the retests. If I had to drive 5 hours to have them draw 2 vials of blood to verify a borderline result, it would piss me off no end.

I know that they are doing this because the fact that they are testing an experimental drug makes them extremely cautious. The various levels that are causing them concern are levels above those they accept during standard treatment. One of the individuals in our support group had their Hemoglobin drop into the low 9’s during their treatment. In my case if it drops below 10 (and it has been testing that borderline for a few weeks now) they will reduce my Ribavirin dosage to try to forestall any further drop in the level.
There attention and care are appreciated but it feels like the Hepatology Dept. of California Pacific Medical Center is becoming a second home and while everyone is very supportive, positive and friendly, there are better places to be than in a waiting room, an examination room or a blood drawing site.

And just to make sure that I don’t present myself as not being self-serving – we don’t get paid for the retesting visits only for the scheduled testing visits. It’s not the money per se, but it is the fact that even for someone as conveniently located as myself, any visit requires a minimum of 2 hours time and generally 3 for the long visits. You have to get there, be there and get back home or to work and all that takes time and energy. But, hey I’m not going to go on strike and the experiment is working, at least on me.

The major worry is that if the low levels of Neutrophils are confirmed, they will remove me from the experimental drug, the RO5024048 aka RG7128. That’s the stuff that has been working and it is definitely the stuff I want to continue. Go ahead and reduce the Interferon or Ribavirin dose, just don’t take away my Attila the Hun drug. I want to have those ruthless little molecules hunting and killing virus for as long as I possibly can.

It boils down to spending a couple of hours having 2 vials of blood taken so they can recheck blood component levels to determine whether or not I get to keep getting “the good stuff” as long as I possibly can.

No pressure in that eh?

Flat Affect: working on Interferon

Yesterday was the first time I actually worked my job within a day of injecting Pegasys. I normally inject on Thursday evening take Friday off and start working again on Monday after the symptoms have abated somewhat. This week I injected around noon on Friday because we set up our booth Friday morning.

I had my normal tough night after injecting and so got only 4 or 5 hours of sleep on Friday night. I usually notice that fatigue and nausea set in about 24 hours after injecting and stay around for about 36-48 hours. This usually means the worst is over by Monday and I can go to work and be relatively efficient and useful. This time it needed to be a bit different.

I came in Saturday afternoon to relieve the morning guy at the booth and was immediately immersed in some serious bargaining and wheeling and dealing. Within 30 minutes, I was exhausted and feeling a bit sick. Luckily, things slowed down from that point on and by mid afternoon, the pace was moderate and steady. I spent the next few hours planted on my chair outside the booth with a dazed and somewhat blank expression on my face. Sure, I could write out receipts and deal with customers, but I definitely had the “flat affect” of low energy and emotional detachment.

The longer this goes on, the more I learn about myself. I can definitely work through the acute interferon side effects, but it is not something that is good for me or for the folks who are dealing with me. We are both shortchanged by the situation.

I work again today, so I have another chance to sleepwalk my way through the day. Luckily, it is Super Bowl Sunday, so you can imagine the size of the crowd that will be at a rare book fair starting around kick-off time. Since everyone there will be having a hard time staying awake, I won’t look unusual at all.

Steel Gray Lining

The day I found out I had Hep C was a crazy day. I remember talking to my doctor and him doing a very minimal job of explaining the disease. I remember being stunned by the news that I had a chronic, long-term and serious disease. I also remember that I was confused and puzzled about what might be the consequences of having this particular disease.

I went online immediately and Googled Hepatitis C. I went to the most reputable (in my mind) web sites – the Mayo Clinic, the Centers for Disease Control, Johns Hopkins – and starting to read about Hep C. The first thing I checked was what having Hep C meant in terms of living my life. All the sites said the same thing, the best thing you can do to assist your body in fighting the disease and in dealing with the effects of the disease is to stop drinking. I remember the “oh, shit” reaction to that as I realized that it would be a major change in my life. My wife and I usually had wine with dinner and there is nothing quite like a cold beer on a hot day or after a long days’ physical work. But I didn’t think much about it past that because when it is put in terms of “keep drinking, die faster; stop drinking, live longer,” it creates a clear-cut choice and one I didn’t have a great deal of trouble making. In the 14 months between being diagnosed and entering treatment, I drank on election night 2008, Thanksgiving 2008, New Years Eve 2008, Valentines Day 2009, My Birthday 2009, Calistoga vacation 2009, Thanksgiving 2009 and Monterey Vacation 2009. Even my Gastroenterologist didn’t have any problem with my behavior.

Then I read about the long-term effects of Hep C. The endgame of cirrhosis or liver cancer and possible transplantation all were very serious, but they were all very long-term. All the discussion of Hep C indicated that it was a disease that progressed slowly. You probably have it for years in the chronic state before it finally begins to produce symptoms. Even after it goes symptomatic, most people have a considerable period of time before it reaches the endgame state of treat, transplant or die. This is all somewhat reassuring in that it removes the pressure to decide Right Now what to do about the disease. You have some time to do research, to have more detailed testing done, to examine your personal life situation and then to reach a decision about what to do, what course of action to take.

The next stage of research was reading about the symptoms and side effects of having Hep C as an active infection in your body. The three I remember making an immediate impression on me were: fatigue, depression and brain fog.

They defined fatigue as a general lowering of energy. It is not something that automatically means exhaustion or collapse or some such. It means that you notice you just don’t have the energy to do either the same types of activities you have normally done in your life or you can’t do them as long or as intensely.

Depression is the fact that you don’t Want to do as much as you did before, or the things you used to like to do or just to do stuff at all. It doesn’t have to be a serious clinical state of having a hard time doing day-to-day activities or really having no desire to connect with your life. It can be a sort of general malaise that keeps you from being as excited about new projects, new activities or just doing the things that you enjoy.

Brain fog is a general decrease in your cognitive abilities. It means you have a hard time paying attention, keeping a train of thought, and have problems with short-term memory or concentration. You just don’t generally feel as sharp as you did in the past. You might notice you are forgetting more, or doing something that doesn’t make sense or not being able to remember why you are doing something or being somewhere (at least more that the normal level of forgetfulness and brain-lock).

I had all these three in spades and, as the Executive Director of my organization (known forever forward as DB the ED) said to me, maybe the steel-gray lining within the cloud of learning I had Hep C was finding out the symptoms I had been having had a definite cause. I had a definite reason for the behaviors I had been experiencing for the last few years. It wasn’t necessarily just that I had slipped into a mild depression; that I had somehow become lazy and shiftless; that I was feeling the onset of Alzheimer’s disease or some other mental depredations. I had a serious viral infection that produced these sorts of effects as a result of its activity in my body. This knowledge definitely produced a sort of relief. It’s a strange sort of relief to be able to say that depression, fatigue and mental deterioration are the result of a long-term, liver-destroying viral infection. But to have a solid reason that is not dependent on the variable biochemical definitions of depression, clinical or otherwise, somehow gave me a more solid form of hope.

It is definitely Not a silver lining, but a lining it most definitely is. And steel-gray or not, it gave me a much firmer grasp on my recent past and a clearer picture of the future.

Support Group: The Kindness of Strangers

I went to a Hep C support Group for the first time yesterday. I had wanted to go for a while, but my first attempt was aborted when I was so tired I just went home to bed right after work. The next time I tried was about 10 days ago. I discovered when I arrived that the group was on hiatus. Third time’s the charm however as I forced myself to go even though I was tired it was an experience I would recommend for anyone with the disease.

The group has been going on for years and had a wide range of people and stories. There was an individual who had been through the full 48 week treatment twice and relapsed both times. Another person was several months past the end of a 72 WEEK course of Interferon and Ribavirin. Another had been through treatment in the late ‘90s when you had to inject the Interferon 3 times a week and had been clear of virus for over 9 years. Others had not decided to do treatment yet (or even ever) and some were in the middle of it like myself. Even though the group was not large, it encompassed most of the range of experiences of people with Hep C.

It was a useful experience to hear someone in the room say, “Oh yeah, I had that,” or “Usually that one levels off after a while,” when you mentioned one of the effects of either disease or medication. It seemed that anything that anyone mentioned about how they were doing or what particular challenges they were facing now was generally met with either sympathetic understanding or a tip on how you might be able to deal with it.

I have to say that I was impressed with the matter-of-fact attitude (and humor) of the people in the group. I’m only 8 week in to treatment and I cannot imagine going through this for 72 weeks or 48 weeks TWICE. Yet everyone could joke (at some level) about what they had gone through in the past or were going through now.

It is also good to know that others feel the same frustrations you do. The brain fog was a major complaint of everyone in the room, followed closely by fatigue and general loss of energy. It was also heartening to hear from the folks who had completed treatment and cleared the virus that things return to normal. It may take a long time for you to find your brain and get your energy back, but mostly, you can come back and be yourself. It is a great comfort to know that there is light at the end of the tunnel, even if it is a damn long tunnel.

I don’t feel badly that I did not find a group earlier, but I am glad I found one and I intend to go back on a regular basis. I don’t know what it would have done for me to go while I was diagnosed but not in treatment. I think if I had decided to wait a while for western medical treatment and instead decided to try to manage the disease through other means, going to a group would have been a major benefit. It seems everyone has a strategy for particular symptoms and the group knowledge represented is quite impressive.

I recommend finding a support group to anyone with the disease. Whether you feel the need for emotional support or would like the ability to tap in to a great deal of experience and knowledge, you will definitely feel the kindness of strangers.

Week 2 Results: Giving It The Lowdown

I went in for the week 4 testing and got the week two results. Not that it was all beer and skittles for the testing. This particular blood draw and assorted other tests was to occur before my daily med dosing. To explain this, they gave me a sheet indicating what would occur during this type of test. What was not emphasized was that the sheet they gave me was an example of what could take place during a typical pre-dose test, not what would occur at the actual pre-dose test that I was to undergo.

So there I was at 8:00 a.m. instead of the usual 9:00 a.m., dazed and confused, with all my drugs, needles, vials, sharps container and studly fanny pack. Why, because I remembered seeing the 8:00 a.m. start time on the sheet, that’s why. The fact that I had misplaced the sheet – okay, I lost it – didn’t help matters. About 35 minutes later AVB came in to work and saw me sitting in the waiting room and asked why I was there so early. When I explained about the time on the sheet and the fact that it was pre-dose, she had the wonderful good grace to look embarrassed. She went on to explain that the sheet was a sample and that I was scheduled for my normal 9:00 a.m. appointment.

At any rate, after the sorting out and the trek back to the appointment room, they did the test sequence: 16 vials of blood (a new record), the 2 EKGs, the 2 blood pressure readings and the usual pulse and weight.

Two things stood out. My blood pressure was down to 133/85 from 155/102. AVB was very happy about this as she told me that after the last few blood pressure readings, the research scientists were going to require weekly appointments for the duration of my participation in the study unless my BP went down immediately. Well it did. I personally think that my BP started to go down the moment I got the viral load data from the first week of treatment. My BP had been going up steadily at every testing appointment and I think the data I got for the first week of treatment that showed the treatment was working reduced my stress level immediately.

The other is that my weight is not going down much at all. It has only dropped a few pounds since the start of the study. As one of the side effects of the meds is often some serious weight loss, this is somewhat of a good thing – to the researchers. After the usual holiday larding-on of poundage, I was thinking that with all the other unpleasant side effects, at least I was going to get some weight loss out of it, but nothing significant so far.

I also wonder about the amount of blood they take. I know they need the data on a wide ranged of blood contents but 16 vials of blood at even ½ oz. per vial adds up to 8 ounces of blood every two weeks – perhaps more if I am underestimating the size of the vials. Given that the Pegasys suppresses white blood cell production and the Ribavirin suppresses red blood cell production, does taking that much blood contribute to the potential anemia and low white blood cell counts? Does the test protocol itself contribute to the reported side effects of the drugs?

But now the news that matters: Viral Load.

My viral load was down to 1110 IU per ml. That is a log 4.06 reduction in viral load from the start of the study. Since the week-two blood draw was done early, that means that in 11 days the viral load went from 12,900,000 IU per ml. to 1110 IU per ml. The Mongol Horde is continuing to slaughter the viral peasants. Or perhaps Patton has blown through the defensive line and is wreaking havoc in the enemy rear areas. It doesn’t matter what the metaphor you use to visualize the effects, that fact is the treatment is working and I’m getting a serious viral response. AVB said again, that she would bet money I am on the Polymerase Inhibitor; that you just don’t see that kind of response on standard therapy.

I hope it holds up and I hope it transforms into a sustained viral response. I was a bad candidate for treatment with the viral load I started out with. If this stuff adds that much viral response to the standard therapy, it means a lot of folks with high viral loads and genotype 1 Hep C, have a lot better shot at clearing than they did before.
It is all far too early to talk like this, but I am excited as hell that this is happening and that, so far, I have been able to tolerate the therapy.

Let us hope that in the immediate future, that RG7128 or RO5024048 or the Polymerase Inhibitor or whatever you want to call it, keeps kicking viral ass.

Treatment: Lord Knows the Shape I’m In.

Started treatment this weekend.

There was a two hour appointment where they took the standard 14 vials of blood, 2 EKGs, Height, Weight, Temp, Blood Pressure and we got the skinny on what the procedures are for the trial. We are doing the Standard of Care (SOC) which is pegylated interferon and Ribivarin as well as the experimental drug or placebo. Of course we are all telling ourselves we are getting the new drug.

We were shown how to fill a syringe with the interferon and how to inject it, given 4 weeks worth of the various drugs and a set of syringes, alcohol wipes and band-aids – all in an attractive mini insulated fanny pack with a prominent Roche logo. Now if we could only get T-shirts and hoodies we could really be stylin’.

The interferon injection is pretty much the same as injecting insulin. It uses the same syringes and needles and the same technique of pinching up a bump of skin, sticking the needle and injecting the drug. It’s only 1 ml, so it’s not a lot and is quite painless at the time of the injection. We will be doing it once a week for the next 24 weeks at the minimum.

The Ribavirin and the RO5024048 are pills. 2 RO5024048 and 3 Ribavirin each morning and evening. With food or they say the nausea will be pretty intense.
We have to keep a diary noting the exact time each dose of the oral meds is taken and the day we inject the interferon. We have to keep all the bottles, vials, labels and syringes and show them to the researchers at every appointment. They count all the pills to make sure we have taken them and check the vial labels to see that we have injected. If we do not keep an accurate diary, we get one chance to make a mistake and at the second mistake or missing data or missed dose of the meds, we are bounced from the trial. (Now I’m not one to encourage the wrong sort of behavior, but if you knew that you were in a trial for a promising drug that ups the cure rate for your disease and you missed a dose, would you report missing a second dose? Or would you just throw the pills out, write something in the diary and never say a word? Human nature is a strange and wonderful thing…).

We were also given information on the common side effects and some techniques to mitigate them. The interferon can be pretty nasty to many people with flu-like symptoms, muscle aches, fever and nausea. It also suppresses the white blood cell production in your bone marrow making you more susceptible to infection during treatment. The Ribavirin will make you anemic over time and also has fatigue and (delightful combination this) insomnia as common side effects – and let’s not forget hair loss, also common. The RO5024048 has some similar side effects but the ones they are really worried about are kidney damage and problems with the eyes.

Did the first injection at the appointment and took the first 5 pills. We were told on a two separate occasions to make sure to bring 2 Tylenol to take before the injection, some food to eat (some sort of snack) to settle the stomach and a urine sample. The other guy who was in the training session with me forgot both Tylenol and food – I hope he remembered the urine but…

Went home and hung around waiting for the side effects shoe to drop. And waited and waited. Eventually I noticed that my neck and shoulders hurt and I was a bit chilled but only a touch of nausea as long as I was stretched out. As soon as I went to bed and slept in my usual side-sleeping fetal position, the nausea hit and I had to straighten out my body. It was a strange feeling to start to go into my normal position, feel really crappy, straighten my legs out and feel it subside. If you were really perverse, you could give yourself waves of nausea at will.

Over the next two days, I had some mild nausea, heartburn whenever I ate anything with any heft to it, and mild muscle aches. Not bad at all compared to the horror stories I had been hearing from people who had done the treatment and from what I read on treatment websites and bulletin boards.

On Sunday night (the third day) the insomnia set in. I was up till 2:00 a.m. before I could sleep. It wasn’t the sort of insomnia I have had before, thoughts racing through my head, anxiety, or nervous energy from late-in-the-day caffeine; it was just lying there with my eyes closed, comfortable and tired without be able to sleep at all.

Needless to say, Monday was a long slow slog through my first day back at work.