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.

Sunday, February 28, 2010

Deciding About Treatment – Lot’s to Think About

I have had several people ask me why I decided to enter treatment. Specifically, they wanted to know why now?
My situation was this: 56 years old, high viral load at 13,000,000 per ml of blood, stage 1 liver disease, my Hep C had been symptomatic for 18-24 months.
Mine was not a desperate situation, no advanced liver disease, symptoms were present and annoying but not yet debilitating, and I was not in poor health generally. It came down to a long and serious consideration of a number of variables from health to work to family considerations. Here are some of the considerations:

What is the stage of your liver disease? Clearly, if you have advanced liver disease, treatment becomes something much more important and possibly mandatory than if your liver is not so deteriorated. If it early stage, you have the gift of time to consider all your options and potentially await additional treatment developments. If it is late stage, you have to decide much more quickly as the consequences of putting off treatment become exponentially more serious.

What is the state of your general health? Is the Hep C directly attacking your health through its symptoms and side effects and/or is the state of your liver creating additional health issues that are threatening or debilitating? To a certain extent the poorer your health, the more difficult the side effects of the treatment may be, but the more important it may well be to begin treatment in order to battle the effects of the disease. Again, the better your general health, the less immediate the decision becomes.

How are the general Hep C symptoms affecting you? Are you able to use available therapies to mitigate the effects of the symptoms of Hep C? Fatigue, Depression and Brain Fog are 3 of the more widely reported symptoms of Hep C. There are also joint pain, Ascites or fluid build-up in the abdomen, weight loss and the really serious symptoms of late-stage liver disease. There are a number of therapies for the general symptoms and if you are using them successfully and your life seems to be stable and at an acceptable level of health, this affects your decision. If the symptoms are beginning to overwhelm you, or become more than is tolerable for you, this also will have a large influence on your choice.

What is your health insurance situation? Hugely important of course. In countries with government financed health care systems this is a bit less of a concern, though the time before you can get authorization and enter treatment has to be considered carefully. If you have private health insurance, does it cover Hep C at all and if so, which of the therapies does it cover and for how long? If you eventually have to change insurers, will your Hep C be considered a per-existing condition and therefore the treatment would not be covered by insurance? Does this mean you should go for it while it is still covered? These are really tough questions and can definitely make the difference in treatment decisions. Something as basic as timing your treatment to begin the year right after your insurance renews can make all the difference in being covered through the entire length of treatment.

What is your employment or general work situation? This is a multifaceted question. If you are self-employed or run your own business, can you keep it going while not being able to put in the 40-60 hours per week that self-employment and business ownership generally require. Do you have people who can pick up the slack and help you during the 48 or more weeks that you will be, most likely, not at your best? Can your company survive if you have to take some time off without being able to work much at all?

If you are employed, what is your employer’s attitude going to be? Can you let anyone know you have Hep C? Is it clear to you that the attitudes at work would not be in your favor if they knew you had the disease? While it is illegal to discriminate against someone with a chronic disease like Hep C, remember that the burden of proof is on you. Should it come down to contesting a lay-off or firing, you have to bring the case and prove the action was because of Hep C.

If you believe that there is support from your employer what form will it take? Can you work a shortened workday or 4 day week? Can you take time off during the day to rest if necessary? Will they be supportive of the time you need to visit doctors and have tests? Do you have a sick leave policy or accumulated sick time that can be used to make up the time that you cannot be at the job? All these questions are vitally important and must be considered carefully before you make choices about treatment.


Which Genotype of the Virus am I and what are the chances for success? The common genotypes in North America are genotypes 1, 2 and 3. Genotype 1 is the most common and conversely, the most difficult to treat successfully. Genotypes 2 &3 are much less common in North America (and much more common in the rest of the world) and have a much higher success rate with treatment. The Standard of Care (SOC) is pegylated interferon (Pegasys, Peg-Intron) and Ribavirin (Copagus) taken for 48 weeks. The percentage of patients with a Sustained Virologic Response (SVR) is about 46% for genotype 1 and 80+% for genotypes 2 &3. So you have a bit less than a 50-50 shot to be cleared of the virus after treatment if you have the most common genotype present in the USA. The question boils down to: do you want to endure the effects of treatment for a year (and then some recovery time as well) for a 50-50 shot at a cure?

This is where the question of experimental drug studies comes into consideration. The study I am in uses a polymerase inhibitor (RO5024048) in addition to the SOC. The early studies indicated that it could result in a SVR rate of upwards of 70% in genotype 1 patients. There are very advanced compounds in the protease inhibitor family (Telaprevir is one example) that have shown in phase 3 studies that they have SVR rates of about 64%. When you see these sorts of results, the question changes quite a bit. Can I deal with treatment for a year if it means I have a 2-1 shot at clearing the virus or even a 3-1 shot?

What is your family situation? How stable is your relationship? How do you think your partner and/or children will react to the situation? Will they support you through the difficult parts of treatment? Does your family have the necessary financial means to deal with the potential loss of income and increased costs brought on by undergoing treatment? These are all highly personal questions whose answers are different for every individual considering treatment. They can also be questions whose answers change over time. Sometimes folks can start out very supportive and be worn down over time. Other times people step up to offer support and assistance in ways that can be astonishing in their generosity.

These are just some of the questions that arise when considering treatment. More to come…

Wednesday, February 24, 2010

The best laid plans…end up on the couch

I was going to write a bit more about the early months of figuring out my disease today, but then walked home from work today. This involves walking the last ½ mile uphill (and it gets steeper the further you go). So when I walked in the door I was sweating profusely. I took off my sweatshirt and t-shirt, got out a towel and went to the living room to sit for a moment and cool off. Not to mention bring my respiration and pulse rates back down into only double digits again.

The way you cool down at this time of the year is to turn on the television and watch the Olympics. Just moments before I got home, the puck was dropped in the Canada-Russia quarterfinal hockey match and thus, it was being televised when I turned on the set and clicked to the deep end of the cable spectrum.

I was born and raised in Minnesota. I was never a particularly good skater, but that did not stop me from playing hockey every winter from the time I was about 9 years old. We used to flood the backyard and freeze it into a rink. We had an old streetlight on a pole and played hockey until they forced us inside to bed. When we got older, we played at the local parks and on the ponds cleared off the frozen lakes in town. We played on skates and we played something called “boot hockey” with a frozen ball and tennis shoes when we didn’t feel like dealing with all the equipment. We didn’t ski because there were no mountains and skiing was something only the rich kids could afford. Cross-country skiing was the province of the old Norwegian guys that we all thought were crazy. But everyone could play some sort of hockey.

This all is just a pale attempt to explain why I had to watch two of the best teams in the world go at it in the Olympics. And, once the Canadians had thoroughly thrashed the Russians (the first period was one of the most exciting, balls to the wall periods of hockey I can remember seeing in eons), why I am watching the Czechs play in the second game now. Well not exactly now as I am writing this between periods, but you get the point.

The Hep C will be around for a while but the Olympics come once every 4 years. So I will tell you about meeting my gastroenterologist another time and head back down to my comfortable sofa, a tall glass of water and some truly wonderful hockey.

Monday, February 22, 2010

On the Road Again – Yet Another Retest

My lymphocytes are low again and they brought me in for another retest. They are at 410 and anything under 500 warrants a retest as they are being conservative for the purposes of the study. AVB told me that in standard clinical practice the lymphocytes can drop to 350 before they take action. I wish that were the case as this seemingly constant traipsing back and forth for a couple of vials of blood is tiresome.

I realize the complaint is a hollow one. I am, after all, getting a cutting edge and, to this point, extremely effective new compound to attack my Hep C. But after 11 weeks now of being tired and breathless and fogged in the head, it just starts to get less exciting. Even the fact that a whole new set of health care professionals know me by name begins to lose its charm.

The good news is they gave me my latest (week 10) viral load results and I am still UNDECTECTABLE. 3 straight tests covering 4 weeks of time at that level. Keep it up guys, look under every molecule to find those viruses and kill them. There is no peaceful coexistence with this virus. I want them all dead, even to the bits and pieces. There is some small mental exhilaration in having something I can root wholeheartedly to be destroyed, killed, eradicated and just stomped on. Free your inner barbarian and have it join with the RG-7128 aka RO5024048 and just go out and slaughter.

Sunday, February 21, 2010

How I told my Wife I had Hepatitis C

I learned that I had Hep C on Friday, October 31st, 2008, Halloween. I told my wife about the diagnosis 3 days later on Sunday, November 2nd, the Day of the Dead. That was not intended by me to be significant, it was just that I felt I had to tell her by the end of the weekend and the days just happened to match.

It took me that long to tell her for two reasons. I had to learn more about the disease and the effect it would be having on our lives and needed the time to do some research. I also couldn’t tell her earlier because Halloween is one of her all time favorite holidays. She loves the costumes, the parties, the marathon showings of cheap horror and terror movies at theaters and on TV. For many years we lived in the Castro district of San Francisco which is legendary for its Halloween celebration and we always went down to be in the middle of the celebration. So it was not as though I could just dump my news on her on the day itself. After all Hep C is not a fast-moving disease and 48 more hours before the bomb got dropped was not going to make any difference.

We went out to Golden Gate Park in the afternoon and stopped off at the art museum, looked at the show (I have no idea what we saw as I don’t remember much about the day other than our conversation), had some lunch and then I told my wife that I needed to talk to her about something important. I know that made her nervous, as we do not generally have specific conversations about “important” events or about the nuts and bolts of our relationship. Those sorts of conversations tend to come up within our day-to-day life and don’t usually need to be specified as something important. So as we walked over to a park bench, both of us were anxious (I know I was anyway) about what was coming.

I actually had two things to tell her. The one I led off with was that I had screwed up the computer by catching a virus and was going to have to take a day to clean and possibly reinstall some stuff and that she shouldn’t plan any projects that would use it for a couple days until I could get that done. She was a little disgusted with that news and ground me a bit for being careless, but then I told her I had something more important to talk about.

I told her that I had gotten a call from doctor K and that he had told me that I had Hepatitis C. He said that he had tested me for Hep C because he noticed in a previous test that my liver enzymes were elevated and had made a note to test for Hep C the next time I had an appointment. I told her that it was a long-term illness and that it didn’t mean that my health was going to be affected in a seriously negative way anytime soon. I also asked her to make an appointment and get herself tested as soon as possible so we knew whether she had it or not. I told her I had a follow up appointment the next week to go over the results with doctor K.

She was stunned. She immediately asked me a bunch of questions about Hep C. How was it passed from one person to the next? What was the timeline of the disease? What were the symptoms and was I suffering from them? How long had I had it? Did I know how I had gotten it? How was it treated?
I told it was a blood-borne disease, that it was not passed in other ways. There was some possibility of transfer by sexual intercourse but it was not clear if that was because of transfer via sexual fluids or because of blood contact during intercourse. I told her that the disease was briefly acute within 6 months of so of contracting it and that if you did not clear the virus then, it settled down into a chronic infection often without symptoms. That, sometime many years later, the disease became symptomatic. The symptoms were liver damage, fatigue, depression and brain fog and that I was definitely feeling some of them. I had no idea how long I had been infected and there didn’t seem to be any way of telling how long and that I did not know how I had gotten it. She knew full well the range of behaviors I had engaged in that might expose me and, as mentioned in other posts, she had done everything I had. She had no intention of busting my balls over how I had gotten the disease. She was far more concerned about what this would mean for my health both in the short term and the long term as well. As for the treatment, I told her what I knew, that it was long, difficult and had a less than 50% chance of success.

She was worried and scared because the only recent contact we had with someone with Hep C was with an old friend who had been diagnosed very late in the cycle of the disease. He had cirrhosis by then, and was not a candidate for transplant. He died within 6 months of the diagnosis. She did not want that to happen to me (needless to say, I didn’t want that either).

She has a background (and 2 degrees) in science and her immediate response was to gather information. After we went home from the park and talked about it some more, realizing as we did that our information was limited to what I had found out on the internet. She immediately hopped in her car, went to the bookstore and got 4 books on Hep C. We spent a cozy and quiet Sunday evening reading about Hep C from the Dummies Guide to Living With Hepatitis C.

I think the fact that I was telling the news to a scientist made a big difference. My wife is used to understanding and learning about, scientific concepts and processes and in way, that is what is happening with my disease. It is something to be learned about, understood and then attacked. The fact that a treatment is available, regardless of the percentage rate of cure, is a huge plus in comparison to so many other diseases that I could have gotten.

We both lived in San Francisco during the 1980s. We both lost a whole swath of friends to AIDS. We still know long-time survivors of the epidemic. While there are many treatments for AIDS available that can fight the virus and extend the life span, there are no cures. Hepatitis C, on the other hand, has treatments in hand that can clear the virus from the blood and many new ones in the pipeline that promise ever higher rates of clearing. She had found this all out by late Sunday night and it helped a great deal to manage the fear and take control of her response to my disease.

Telling my wife I had a disease that had the long term possibility of needing truly serious medical care and possibly being fatal, was one of the hardest things I have ever done.

Friday, February 19, 2010

Telling Your Family You Have Hepatitis C

How do you tell your family you have Hep C? How do you tell your wife, husband, partner, children, parents that you have a disease that, in many people’s minds, is exclusively contracted by drug addicts and sexual deviants? How do you handle the possibility that others in your family are infected? How do you talk about the question of who infected whom? How do you handle the behavioral changes this forces on members of your family? How do you discuss the effect this will have on the future of your relationship and indeed on the nature of the future life that the infected party will live?

All of these are difficult, complicated and frightening questions to consider. Hep C changes everything about how you think about your life and about how others think about you and your life. Some of those changes are not going to be pleasant or comforting or supportive and you have to be prepared to deal with those consequences.

What was foremost in my mind was that I had to tell my wife and that she had to get tested to see whether or not she had the disease. I had to know whether or not I had infected her. I desperately hoped that I had not. It actually never occurred to me until several days later, that she might have infected me. For whatever reason, be it ego-centricity, my Catholic upbringing which always reinforced the fact that you were a sinner and were eternally guilty besides, or just the innocent (and rather condescending) thought that certainly my wife could never have engaged in any behaviors that put her at risk for contracting Hep C. Certainly she could never have had any medical exposure to contaminated blood products; why she never did anything risky or dangerous or something that might have a high risk of physical trauma and bleeding – Hah!

I have no doubt that there are another set of people who, upon learning that they were infected, would immediately think that their partner had infected them. Their initial reaction might not be the guilt and worry I felt, but rather anger and aggression. This is not me, but I can certainly think of the people I know who would feel this way. They would have a separate but equally challenging set of discussions and emotions to work through with their families.

I also had to plan the act of telling my wife. I am not the sort of person who blurts out facts like that immediately upon learning them. I need to think about what the news means, learn the facts of what it represents and then think about how I believe it will affect me and mine, before I enter the discussion. Then having laid out the situation, I start to deal with the emotional content. My wife is quite the opposite. Emotional stuff happens and she gets it out immediately. She learns bad news and shortly after, I learn the bad news. She talks (and sometimes rants) about for an hour or so and then it’s over. The storm has passed, she has dealt with the emotions and can move on to the consequences and the planning and the long-term. Knowing this (let’s face it, you learn the occasional bits of wisdom after living with someone for north of 20 years) it was important for me to have my ducks in a row and my time and place laid out to break the news. No doubt you have your own set of emotional and power dynamics in your relationship, think about them and consider how they affect the best way to start talking about your new situation.

There is also the question of how to bring up the behavioral changes. First of all, the immediate rush to help when you have a physical injury has to stop. Your partner, your children all have to be told that your blood is now dangerous. It can infect them and they have to be very careful how they deal with you when you are bleeding and with any blood that you drip from a wound or leave on a cloth or bandage. These are hard things for folks to deal with and hard things to tell them. There are also the potential changes in sexual activity. If you are monogamous, you can usually continue as before, though you may want the man to use a condom. If you are intimate with more than one person, you have to be careful and use condoms and you have to be ready for serious changes in the reactions of your partners and the status of your relationships. A lot of people cannot handle the idea of a diseased partner and this applies to both long-term and short-term relationships. This is all potent stuff and setting up a discussion about it can be difficult and harrowing. But it is a discussion you must have. Not telling a sex partner you are infected is irresponsible and morally bankrupt.

Definitely do all this sober. The last thing you need is the fuzzy thinking and emotional volatility of being high while trying to have this discussion. You may damn well feel that you need a drink to talk about this, but I would suggest trying your hardest to deal with it straight.

Times like these definitely teach you a lot about yourself and your loved ones. The best advice I heard was a continuation of the advice on how to treat yourself. Be patient with yourself as you deal with this disease and above all be patient with your loved ones. It can be far harder on them than you. You are directly dealing with the disease and have a chance to feel some tiny level of control - they have none. Getting used to having a family member (be it wife, husband, father, mother, child, lover) with a serious long-term illness that you cannot have any direct effect on is extremely stressful. Give them time to come to terms. They may never be able to handle it, but try as hard as you can to be patient with them while they make the attempt.

I must disclose that I told only one person in my immediate family about my disease. It was my kid sister. We have been close for several years and she has had her own bouts of serious illness. I knew that she would take the news in stride and be able to handle it emotionally. I did not tell my mother who is 83 years old and in frail health. I do not feel I need to add the stress of worrying about one of her children being seriously ill to her often scattered state of mind. I also did not tell my older brother. He went through a serious brain bleed due to an aneurysm about 15 years ago. It involved serious brain surgery, having to relearn the English language, and a permanent personality change. He is much more emotional that he was before and prone to worry obsessively over bad news. Again, I did not feel that burdening him with the constant worry he would certainly apply to the situation was fair. He has enough problems without that.

Again, these are all the sorts of considerations that come into play when you think about telling people about your illness.

Next up I’ll tell about how it went when I told my wife.

Wednesday, February 17, 2010

Week 10 Tests and Week 8 Results

Today was week 10 testing. All the usual tests though only 11 vials of blood for this series.

The important point to me was the Week 8 test results: viral load UNDECTECTABLE. Unlike week 6 when the test detected viral activity though the number of virus per ml was so low as to be uncountable, this time the test reported no detectable viral activity at all. So there it is, the polymerase inhibitor RG-7128 aka RO5024048 knocked the virus down from just under 13 million per ml to undetectable in 8 weeks.

AVB told me that the earlier a patient achieved the undetectable level, the better the chances are for an SVR (sustained viral response) over the long term. Eight weeks is pretty fast in general and tremendous for someone with my initial viral load. A few of the folks I have talked to about there treatment told me that they started with what was considered a high viral load and theirs was in the 3 to 4 million per ml range. Mine was about 4 times that number at the start of the treatment.

While it does not seem to have added any significant side effects to the general run of the SOC side effects, it doesn’t seem to have reduced any of them either.

The other good news was that my neutrophil count had bounced back up over the 500 level and I could continue the experimental drug. Even though I have hit undetectable levels and there is only 2 weeks left in the polymerase inhibitor part of the experiment, I still want to have the full course of treatment. I want that extra two weeks of this drug completely screwing up the ability of any virus left to reproduce. I want the full amount of destruction to be visited upon this virus. I want them hunted down and killed for as long as possible by the most complete range of attack drugs.

The main new factor to report on the side effect front is that my concentration and memory are continuing to deteriorate. As an example, I did not bring in a chilled urine sample for this test period. Why not, you ask. Because I stepped in to the bathroom after I woke up with my urine collection cup in hand, set it down on the sink and then urinated luxuriously and at length while completely forgetting to get a sample of if for the test. I remembered my test appointment and brought all my stuff with me, but remembering to piss in a cup was more than my brain was capable of.

Monday, February 15, 2010

Was It The Chocolate?

Valentine’s Night was a lot more like Halloween night, pain angst and tossing and turning. We had a lovely Valentine’s evening, my wife and I. We exchanged gifts, had pizza – not necessarily what some would call a romantic dinner, but we didn’t have to make reservations, we had a cozy romantic setting at home and we could take our time without the spectre of the hovering waiter and the waiting fellow customers hoping we were going to finish up and leave soon.

Among our gifts were the requisite chocolates which we sampled liberally after our grilled chicken, mushroom and bell pepper pizza. We eventually retired later in the evening and after falling quickly asleep, I kept waking up all night long.
First it was aching and pain all along my left side. So I rolled over, fell asleep and woke up with pain all along my right side. After a bit of short dozing on either side was interrupted by the pain, I tried sleeping on my stomach. Fine for a while until my back locked up on me. After stretching that out, I tried sleeping on my back to avoid sleeping on either aching side. That worked for a few hours until I woke up with my back aching, my sides aching and my legs stiff.

I finally broke down and took 3 200 mg ibuprofens…and eventually fell asleep. I know that ibuprofen is not thought to be good for the liver, but I can’t imagine that sleep deprivation is any better for you. I have never had that level of pain and tenderness in my muscles since having some morphine during my last bout of diverticulitis. I have noticed that the last few injections of interferon have been increasing the level of muscle aches within the first few days of the injection. Maybe that was the case. Maybe it was the sugar or caffeine from the chocolate? I don’t know, but I am not looking forward to tonight if it is anything like last night.

Definitely no Chocolate tonight.

Sunday, February 14, 2010

Valentine for the Hepcat

Today is Valentine’s Day, which to my wife, is the most important holiday of the year. It is followed in importance by our wedding anniversary, but our anniversary is clearly in second place. It is more important to her to affirm our love for each other than it is to celebrate our marriage. After all, before we were married we were in love with each other and if we had not formally married, we would still be in love with each other and probably together as well. Neither of us can really figure out too many people who would have been able to put up with either of us for this amount of time and still be happy about it.

Over the years, we have had our crises both major and minor and have had times of strain in our relationship. Adding long-term, serious, contagious disease to the relationship however, throws a real wild card into the mix. Did one of you infect the other? If you did, is the other person able to handle that news without breaking the relationship? If not, does how the infected person get the disease break the relationship? Does the thought of possible infection so distress the uninfected person that they can’t handle continuing the relationship? Does the infected person wallow in guilt and self-pity? Does the uninfected one withdraw emotionally? Does the relationship break down with mutual recriminations and anger? Does the situation bring on support or rejection? All these and dozens more questions and problems crop up when you add a disease like Hep C into the equation of your relationship.

My wife responded in the most positive way possible. Since we had both had bouts of risky behavior in our lives (some when we were together) neither of us could point fingers at each other. To be fair, the finger pointing would have been one-way, as it turned out that only I had Hep C. My wife’s concern once we knew was entirely to discover what the disease was, what having it meant, and what were the long-term and short-term ramifications as far as my health.

She has been incredibly supportive. She has done research on the disease. She has helped with understanding and attempting to deal with the symptoms of the disease. She has come with me to important doctor’s appointments and brought her own questions and taken extensive notes about the responses we have been given. She came to the meetings about the drug trials I tested for. She assists me, now that the trial is going-on with injections and general record keeping of both dosage and side effects. She is constantly urging me to rest and not push myself to exhaustion. She tries to keep me fed and watered, though with my life-long erratic eating habits, that is an almost impossible challenge.

In short, I don’t know where I would be right now without her support. She is the most important part of my treatment. If I were alone and dealing with the exhaustion, emotional swings, depression, aches, pains, insomnia, nausea and all the rest of the mess, I do not know if I would be in remotely as good shape as I am in and I do not know if I would be nearly as successful in keeping up with the treatment.

Doing the blog was her idea and she would love to be contributing more often than the couple of posts that she has managed. There is something about not having enough time what with her two jobs, both with local non-profits, her part-time volunteer assistance to yet another non-profit and the job of trying to keep track of me and my health that gets in the way of contributing as often as she would like. Her heart has always been bigger than her time.

So, happy Valentine’s Day sweetie. I can’t imagine being with anyone else and thanks for all the love and support over the last 30-odd years. I hope we stay together for a long time to come and with the help of RG-7128 aka RO5024048 it will be time spent healthy. I love you.

Friday, February 12, 2010

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?

Tuesday, February 9, 2010

Beware The Fog

Only the alertness and agility of youth saved me from seriously injuring someone this morning. It was not my agility or alertness, but the quick reflexes of the young man I nearly ran over in a crosswalk on the drive to work.

Morning has never been my best time. I have always moved slowly into the day, gaining consciousness and alertness as the day goes on. I am generally at my best in the evening, not the morning. I was always able to counteract this a bit, by drinking a big glass of green tea every morning before setting off. The troublesome interactions with caffeine that the treatment drugs seem to induce now require me to have only a small cup of tea in the morning lest I get extremely irritable and erratic in my actions.

The progression of alterations in behavior is a gradual process and as the person on the inside, it can be very difficult to notice. I clearly have not been noticing that my attention is more easily distracted and that my concentration often drifts off while I am performing routine tasks.

Several times a week, my wife drops me off at work on the way to her job and she either picks me up on the way home or I walk home from work myself. In either case it is a pretty safe way to go with minimal danger to myself or others. On Tuesday, however, I drive because it is the day I go grocery shopping for the week while my wife works late at her job. Today was Tuesday and I was driving.

I drove my small pickup and could not find parking along the street where I work. I had noticed a spot on the way, however and circled the block to get back to it. I pulled up to a red light and looked to take a right on the red. I did not see anyone on the sidewalk and looked left to check traffic. One car was turning left and another began to creep around his right to pass, and then put on his right turn signal and began to turn. Realizing that I was clear to turn, I started to turn the corner.

I guess I still had the sixth sense noting something wrong as I began to hit the brake even before I consciously saw the guy directly in front of me, leaping backward from my truck. The look of terror, rage and disgust on his face was sickening. I think only the fact that he could see the look of horror and fear on my face kept him from screaming at me and beating on my car. He merely glared at me and stalked away across the street. I turned the corner, parked the truck and just sat for a few minutes in a sort of shock. It has been a very long time since I have come that close to seriously harming another person.

It made me realize that I have been having more moments of inattention, loss of concentration and just drifting away. It has not happened very often when it mattered, but I have pulled up to a stoplight, then started across the intersection because I thought I was at a stop SIGN instead of a stop LIGHT. I have sat at a stop sign too long for exactly the opposite reason. This has not happened but a few times in the past six months, but as I rediscovered today, it only takes one time someone’s life can be ruined.

So be careful. Ask your friends and loved ones how they think you are doing. If necessary, stop doing some of the things that require more attention and energy than you can give. At the very least, make sure that you are feeling awake and alert and energetic before you start activities that can put you and others at risk.

I know that if I had hit that young man today both our lives could have been changed in a truly profound way. His through injury and all its consequences and mine because regardless of the legal ramifications, I would never have been able to forgive myself if I had badly hurt him.

Sunday, February 7, 2010

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.

Saturday, February 6, 2010

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.

Friday, February 5, 2010

Ch...Ch...Ch...Changes

A few weeks ago, there was a post from TC who mentioned that they were just starting treatment, had had their first shot and no serious side effects yet. I hope it is still going well for TC and I wonder if they are seeing some changes.

I have noticed that the side effects and general overall feelings of health are very fluid during treatment. I have only been on the therapy for 8 weeks and yet I have had great variation in the range and severity of the effects of the meds on my body and mind.

At the beginning, I had a lot of emotional swings, lots of tears, ups and, more particularly, downs in my mental state and just not being able to predict moment to moment how I was going to feel. 8 weeks later and my emotional state is more stable. It is stable at a lower level, but stable. I am not moved to tears as easily. It still happens, it just takes better songs and movies to do it. I don’t get up and down as much and I am more likely to be able to keep an even keel in my dealings with others.

Why just today, while setting up a booth at the SF Antiquarian Book Fair, I was able to shoo away the aggressive and persistent dealers who insist on trying to root through your stock before you even set it up without blowing up at any of them or banning them from the booth. I would not have been able to have that level of equanimity a few weeks ago. Some of this is due, unfortunately, to having less energy and personal affect than before, but at least it allows for more predictable and reasonable behavior on my part.

For the first several weeks, I always had chest pain for 2 or 3 days after the Interferon injection. It feels, like someone said in one of the books my wife bought, like there has been a football stuffed into your chest. I do not get that much at all anymore and if I do, it is only for a few hours or so.

A couple of weeks into therapy I started to get mild rashes and itching, particularly at night. It was annoying and played hell with my sleep, which is the last thing you need with Hep C. I have not had rashes for 3 or 4 weeks now and the itching is now confined to a bout of intense itching, generally on the tops of my feet, every 10 nights or so. It is really intense and drives your crazy for a while, but I can handle it if it stays at 10-day intervals.

I also noticed that my eyes changed very rapidly during the first 4 weeks of treatment. I have natural monocular vision which means that one eye focuses on close things and the other on things far away. Even though I have glasses (bifocals even) and use them for reading at night and in the morning, I generally did not need them during the day for my normal activities. My left eye, the close focusing one, has lost a great deal of the ability to focus on small print. I now have to wear glasses for a lot of the reading I used to do without them, or suffer headaches from trying to focus. It happened fast enough that they sent me back to the eye doctor to see if anything even more serious was going on (cataracts, macular degeneration, etc). Thankfully, nothing except my losing the ability to read without glasses. It seems I am getting old, according to the cute young eye doctor. Since I am now much more stable and predictable in my emotional states, that momentary feeling of rage at the cute young eye doctor must have been an anomaly.

I also notice that in the past 2 to 3 weeks I get light-headed more easily than I did at the beginning of treatment. I have to be careful about getting up quickly and moving quickly as this triggers the feeling, sometimes quite acutely.

The other noticeable change since the beginning of treatment is in my general energy level and my level of muscle weakness. Both have been trending consistently down since the start. It has happened gradually enough that it took awhile for me to credit the treatment regimen for the effects. It was 4 or 5 weeks after the start that I really noticed the fact that doing something normal like the laundry left my arms tired, or that walking up a flight of stairs with a box of books left my legs burning. None of these sorts of activities bothered me at the beginning of treatment.

Again today, after spending 3 hours setting up the booth, I went home and immediately took a 3 hour nap. I was exhausted. This is an example of my lower general energy level. I cannot move as quickly. I have to do things more deliberately and slowly. I have to pace myself very precisely to make sure I will get the things I need done.

It is interesting that it affects writing these posts as well. One of the reasons I don’t do it everyday (given that sometimes I just don’t have a damn thing interesting or worthwhile to say) is that I get home from work and a bit of shopping and I am just wiped out. The idea of sitting and writing a post just seems like the most challenging thing I can imagine. And the bed, oh yes the bed, it so soft and warm and fluffy. With the nice sheets and my lovely wife and, well no need to wax rhapsodic about the desire to lie down and rest, we all know the joys of that. Speaking of which, the bed is calling to me now and it doesn’t sound like David Bowie either.

Wednesday, February 3, 2010

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.

Monday, February 1, 2010

Amish Quilts and Nap Time

Yesterday, my wife and I went to see the Amish Quilt show at the DeYoung Museum in San Francisco. What astonishing stuff. The patterns are just striking and the optical illusion 3D patterns are something you can get lost in while looking at them. They use a lot of black backgrounds with vivid primary colors that just make the patterns pop off the quilt at you. I can’t imagine being able to sleep with some of those quilts on your bed though; your eyeballs would never stop vibrating.
Going there did point up another aspect of the Hep C treatment management thing and that is that you have to plan your day pretty carefully and with full awareness of what your energy level is.

It’s not like going to the museum is climbing Half-Dome. We parked a few blocks away, walked on flat ground to the museum, walked around the museum on mostly flat floors and still after an hour of looking at art, it was “let’s head for the cafĂ© and sit down for a while.”

It’s only been about 7 weeks since I started treatment and my mind still thinks like it did 2 months ago. You go out for an afternoon or evening of socializing thinking full well that you will be going strong for 3 or 4 hours. Then, 90 minutes in to the event, you start searching for a chair, yawning, and getting that dazed and confused feeling that comes with real fatigue.

My wife gets it a lot better than I do. She has been watching me now for months as I discovered the extent of the disease, researched treatment, screened for the study and then started in. She has seen the energy go down, the bags under the eyes get larger (like I really needed that, they looked like sand dunes already), and has watched me gasping after going up a flight of stairs. She is always asking how I feel, if I am tired and do I want to sit down.

Of course I am tired, feel crappy and do want to sit down, but the old Midwestern Catholic upbringing makes me feel like it’s my willpower that is weak, not my body. So I find myself not paying enough attention and then hitting the wall of exhaustion.

As anyone’s wife would say, “If you just listened to me, this wouldn’t happen.” And she is absolutely right. As one of the folks in Living with Hepatitis C by Everson says, “You have to learn to be patient with yourself,” and believe me, that can be very hard to do.