The interferon journal of Matthew Conroy
The first entryThursday, June 27, 2002 Hello. I am starting this journal as a way of recording my experience with a new treatment for Hepatitis C. I begin the treatment tomorrow morning, when I will take the first dose of Ribavirin in pill form. In the afternoon, I will inject myself with the first weekly dose of Pegylated Interferon. I will also take another dose of Ribavirin in the evening. This pattern will continue for 6 months, at the end of which I hope to be free of the virus. Studies indicate that I should have at least a 90% chance of success. The downside is that there are likely to be side effects. These could range from headache and nausea to psychological effects (even suicidal inclinations) and arrhythmia. But, I'm cautiously optimistic. I don't know how I contracted Hepatitis C, and at this point there is really no way to know. I had major cardiac surgery when I was 9, and at the time Hepatitis C was unknown, so it seems reasonably likely that I contracted it then. However, I received no transfusion then (as far as I can determine), so I'm not so sure. I've never done IV drugs, or received a transfusion at any other time, so it's a mystery. In any case, I have the genotype of the Hepatitis that has responded best to the therapy. And I'm under 70kg (a little), and that, for some reason, increases my chance of success. The treatment is very expensive. I hear that it's around $2500 per month. Fortunately, my insurance is covering it, so all I have is a $50 per month co-pay. Can't complain about that.
First day on drugsFriday, June 28, 2002 Well, the needle goes in so easily you can barely feel it. That's my assessment of my first weekly intereferon self-injection I did today. Though I'll be doing this at home, generally, I went to my liver doctor's office for this first one, just to make sure I wasn't doing anything completely incorrect or dangerous. The nurses acted like it was completely trivial - I suppose that's what happens after you've done a couple thousand injections. My very first one, on myself, had me quite anxious, for various reasons, but it all went well in the end. I stabbed myself with the syringe in my front right upper quad area. Sort of like throwing a dart into your leg, but the needle is so tiny you feel almost nothing, certainly not pain. Who knew? It was a little hard to push the plunger down, though. I think the needle is so small that it takes some effort to get the fluid through it. I also started taking the capsules of Ribavirin today. Two capsules in the morning, two in the evening. They're white capsules each with two blue rings around them, very high-tech looking, they don't really give the impression that they are something that you should swallow. As suggested, I'm drinking a lot of water. I've drunk three liters today, and I'm on my fourth, but I might not finish it. I pre-medicated with two capsules of acetaminophen, and I feel fine so far. Perhaps I'll have more to say in the morning.
Some side effectsSaturday, June 29, 2002 There have been some side effects. I injected the interferon around 5 PM yesterday, and by 11 PM I started feeling like I had the flu. Mostly tired, with headache and body ache. I went to bed around midnight (too late, I agree) and slept badly, which is to say, not much. I started having chills (aka "the shakes" or rigors), but Jenni got me to go to sleep, and they didn't come back. I used to get chills while trying to sleep when I was worried about my atrial fibrillation that I occasionally get; I have to conclude that those were chills of fear, and I think perhaps that's what I had last night, too. I put on a lot of clothes to make sure I was warm, but woke up later incredibly sweaty and had to take most of it off. I slept off and on until around 7 AM, when I slept for about 3 hours. I got up around 11 AM today, and ate breakfast and felt not so bad. Took two more Ribavirins, and basically just went back to bed and slept until 5 PM. I feel okay now, still kind of achy, especially in my calves, and a dull headache. So, not bad really. I can definitely see why it is suggested to inject the interferon on Friday evening, and have the weekend to recover.
Not so badMonday, July 01, 2002 I've been achy a bit today and yesterday, and not especially continuously hungry, but I imagine some of that is attributable to nerves. I'm sleeping well. My injection site is invisible (no bruise or anything at all). Can't wait for Friday to inject again. I didn't mention before that I was diagnosed with Hep C about a year ago. Jenni and I had just moved to Seattle, and I needed to see a cardiologist (as I always do), so I had to see my "primary care physician" to get a referral. She did a physical, and all the labs, and the result was that my liver enzymes were high. Further testing showed I had Hep C. So quite possibly I've been walking around with it for 25 years or more. I had a biopsy a few weeks later. Liver biopsies can be easy and painless, I hear, but mine was a lot like being kicked in the stomach very hard. I've never actually been kicked in the stomach, but I have fallen out of a tree now and then and had the wind knocked out of me, and I imagine it's similar. The biopsy was kind of like that, except that the discomfort took a couple hours to go away. Anyway, the biopsy showed that my liver has taken a bit of damage from the virus, so treatment was in order. Since pegylated interferon was just coming available, we decided to wait for it. It's hard stuff to get: I heard that it is only made in Ireland. I was on a waiting list for the stuff for several months, and finally got to the head of the list a few weeks ago. I have no symptoms of liver disease, and hopefully the interferon/ribavirin will keep it that way.
Time for injection #2Friday, July 05, 2002 Everything's going pretty well. My injection site is no longer invisible. It's a two-inch diameter slightly raised red area now, and at times feels quite warm. It doesn't seem to be growing, fortunately. I was at my liver doctor's office today for a blood draw (I've got blood tests scheduled throughout the treatment), and the nurse didn't think the site was anything to worry about. I find it most curious that today it's at its worst, seven days after the injection. I had a strange side effect the last couple of days. It seemed to me that my shirt would irritate the skin on my back. Fortunately that went away, but for a couple of days it was a real nuisance. I've been walking about quite a bit as I usually do, and don't feel overly tired. Today I rode my bike for the first time since the injection. Just 20 km, very slow overall, but towards the end I was able to move at a good clip. I think I'll try riding a couple of times next week.
After injection #2Saturday, July 06, 2002 The injection itself went well. I did it around 9 PM, with the hope that I would sleep through any side effects. I did sleep well, and long, and got up around 10AM to watch the Tour de France - on every day for the next several weeks! Yipee! I felt very tired, but no aches except a little in the head, and I went back to bed and slept a lot of the afternoon. Jenni and I watched the first half of The Sorrow and the Pity, which seems a little appropriate for the first day of Le Tour, and now I'm feeling rather crappy. Just an overall malaise, headachy, and so forth. Perhaps I'll feel better tomorrow. Injection site #1 is still red, but it seems to be a slightly smaller disk of red, and is not as hot and not as red, so that's good.
All's wellThursday, July 11, 2002 Things have been going fine.
I've been sleeping a lot. Usually about ten hours a night, plus
an hour or two nap in the afternoon. Thank goodness I don't
have a job.
I had some blood in my nose on Sunday, but I couldn't find
nose bleeds listed anywhere as a side effect of the drugs, so
I'm hoping it's nothing. I'll ask about it at my next visit.
Weird blood things are possible, lots worse than nose bleeds,
On the issue of blood, here's my latest CBC report from 7/5/02:
anything that my platelet count is so near the bottom of the
normal range. I will definitely be asking about this.
Rode another 20km yesterday, with Jenni, and felt okay, not
great. All in all I think I'm doing fine.
Injection #3 - oopsSaturday, July 13, 2002 We did injection #3 last night, and it didn't go completely right. I decided to inject in the side of my right thigh. Injection #1 was in the front of my right thigh, and the site is still very slightly red, but injection site #2 on my left thigh looks fine, so I figured it was okay to try the right thigh again. The "oops" happened when I was putting the syringe into the bottle of solution. I missed the little bullseye and shoved the needle through the thicker rubber around the bullseye. I had to withdraw the needle and stick it back through the bullseye. My understanding is that the needles are so fine that every time you stick it through something you noticably reduce the sharpness, and thereby increase the pain that occurs when you stick yourself with it. This seems to be what happened. In fact, I had to stick myself twice, since the first time the needle barely went in, and I had to grit my teeth and really jam it in a second time. On the other hand, I managed to follow the directions a little more closely this time as far as the depth and angle of injection are concerned, and I think I ended up doing a fine injection. I think #1 and #2 were possibly more intramuscular than subcutaneous, but #3 seemed properly subcutaneous. I went to bed around midnight, not feeling too bad (I took two acetaminophen tablets around 9pm). I slept badly though. I'm a bit nervous about my platelet count. My 7/5/02 CBC had my platelets at 149, with 130 being the low end of normal. I found out yesterday that my baseline platelet count from 6/8/02 (I think) was about 240, so my count has dropped.
All seems wellTuesday, July 16, 2002
Everything seems okay.
I don't know the results of last Friday's CBC yet, but I feel really well. Saturday I felt pretty fatigued, especially in the early afternoon, but later in the afternoon I felt much better, and since then I've been fine.
My injection site is again completely invisible, and I have no soreness there at all, so I think I've got the technique down, despite the fiasco of last Friday.
I've got a nurse now at the Be In Charge program run by Schering, the makers of the interferon I'm using. Her name is Madonna, and she's going to be calling me monthly to check up on me, and I can call her if I have questions or problems.
Injection #4Saturday, July 20, 2002 I screwed up a little again on injection 4, but not as bad as #3.
Basically, when I went for the "put the needle into my leg" part of the procedure, I didn't use enough gusto, and had to do it again. I think I'd convinced myself that the needles were so sharp that one would just go into my leg as if into soft butter. Unfortunatlely, they do require a little momentum to go in easily.
So, I ended up with two little pokes in my left quad. Again, it seemed unnecessarily difficult to push the plunger down, I don't know why it requires so much force, at least to get it started.
My hepatitis B vaccine check turned out negative, so I had to get a booster. Hopefully this one will give me immunity. I mentioned the difficulty I was having pushing down the plungerto the very funny health department nurse who gave me the booster, and she very sneakily gave us two syringes to try, handing them to Jenni with a "quick - just put these in your bag" comment. These syringes have slightly larger bore needles, which would help, but when we got home we realized that they aren't large enough capacity (0.3 ml, when I need 0.4). Oh well, they would have hurt more going in anyway.
I did the injection last night around 6 pm, and now, 2:30 in the afternoon I feel a little bit tired, but not bad at all. I think my body is getting used to this.
Here's all my blood data so far. I should be filling in the blanks later. My next blood draw is 7/26/02.
Feeling goodThursday, July 25, 2002 I'm feeling really good.
I rode 20km today and yesterday, and, today especially, I felt totally fine. Today I don't feel like I'm on any drugs at all.
Plus, I haven't been napping at all this week (though I am still sleeping close to 10 hours a night), so I really think my body is getting used to the drugs. My knees seem itchier than they should be (?), but other than that I feel, well, perfect.
injection #5 and more dataSaturday, July 27, 2002 Injection number 5 went fine, no problems.
That was last night, and today I feel fine, I think. No body aches or headache, and I don't feel fatigued. I feel ever better than last Saturday, when I felt pretty good.
Below I've put more blood data. The 6/6/02 data is before I started treatment, so it's a kind of baseline. The lower bunch of numbers are checked less frequently than the top bunch which are part of a CBC. I had blood drawn yesterday (7/26/02) and should have the data from that up on Wednesday, when I have my first appointment with my liver doctor since starting treatment.
Interesting numbers to notice are the bottom two, which are liver enzymes which were the original indicators that I had something wrong with my liver. It will be interesting to see if those have changed. Also my "SEGS" are low. SEGS are part of my white blood count, so I don't think it's good that they are low. I will definitely ask my doctor about that on Wednesday.
a doctor's visit and more dataWednesday, July 31, 2002 Today I had my first visit with my liver doctor since starting the interferon. He says all my blood data looks good, despite the low white blood count and related numbers. He says this is quite normal for someone on interferon. He does, however, want me to do another CBC this Friday (i.e., we're going to keep an eye on it).
The big news from last Friday's CMP is that my liver enzyme numbers, SGOT and SGPT are now in the normal range. This indicates, I think, that the therapy is working, so that's quite a good thing.
injection #6 - one quarter done!Sunday, August 04, 2002 Injection #6 went smoothly on Friday - one of the best so far. It's still hard psyching myself up to actually stab the leg, but a minute or two of pinching the leg flesh in one hand and holding the syringe in the other and I manage to do it all right.
I didn't feel any flu-like symptoms this time, nor did I feel tired yesterday.I did, however, feel especially tired on Friday afternoon before doing the injection. Jenni and I'd been walking around doing errands for a lot of the day, so by 2 or 3 I was very tired.
On the other hand, I did an hour on the bike on Thursday that was great - no fatigue at all.
injection #7, more data, and moreFriday, August 09, 2002 Injection #7 went very smoothly, though, once again, I find it necessary to poke twice. I can't seem to get it through my head that you can't put the needle against the leg and then push - you need to hit the leg with a little bit of speed for it to go in easily. Oh well, maybe by the end of this I'll be doing it in one shot.
My last two sites are still red. Last weeks has a purple bruisy center with a red ring around it. I don't know why I get these reactions only some of the time. They don't hurt, itch, or change color (except to fade) so I'm not too worried about them.
I've been having more than my usual number of PVCs (or some similar heart palipitations) this week. They made it hard to sleep last Sunday night, and each night this week I've had fewer and fewer of them, but they've not gone away completely. This week I've been doing a lot more walking and less sleeping, and I'm still a bit anxious about my blood numbers, so I'm hoping that these stresses are the cause. I'll be talking to my cardiologist next week if they continue to annoy me, just to make sure that they're not a sign of something worse.
A little new data is below. It appears that my WBC has risen nicely, so I'm off the hook for blood draws for a few weeks. I've felt quite good this week, aside from the PVCs, so I think things are going well.
plate o' shrimp, and more data!Saturday, August 10, 2002 Got mail from my liver doctor with a copy of my last CBC and a note saying they want me to get another done on Monday. I'd be fine if they had me getting CBCs every day. The new data is below.
I've been reading Dr. Michikiko Hachiya's Hiroshima Diary detailing his experience in and following the bombing of Hiroshima on August 6, 1945 (just by coincidence with the current: I didn't even notice that I was reading on the anniversary until the day following). At first, the hospital he helped run couldn't even do blood counts because they had no microscopes. Later, they were able, and he found his count was abnormally low. Last night I read the passage where he decribes his second count, a few days following, which came out higher. He was certainly happy about that.
injection #8 - one third done!Saturday, August 17, 2002 Injection number 8 has been done. I had to stab twice, as usual, but it was fine. That's one third of the total of 24 injections.
I've noticed that my injection sites have been turning red and heated about one week after the injection, and this redness lasts a week or more. At the moment, I've got two faded red circles on the tops of my quads, in addition to the newest injection site which doesn't look like much of anything on the left side of my left quad. Plus I've got a newer red patch on the right side of my right quad - this was last week's injection. My injection sites seem to be reacting more and more to the drugs. I don't think there's anything to worry about, since the redness always goes away, and it's never painful or itchy.
Rode twice last week and felt pretty good. Still just one hour rides.
I had another blood draw on Monday, 8/19/02. I don't have the numbers from it but I was told they're fine.
injection #9 - many sticksFriday, August 23, 2002 Today I went for a blood draw and they had to stick me three times (both arms, plus my left hand). I don't know why - I've got decent veins. Later I had to stab myself three or four times myself to get the needle in for the interferon. I don't know what the problem was, though it seemed as if the needle was dull. Oh well.
It was a good week. I rode once, a little over an hour, and felt pretty good though a bit tired.
an unfortunate happeningTuesday, August 27, 2002 Last night I got a call from the head nurse at my liver doctor's office. Apparently, on Friday one of the nurses who drew my blood stabbed herself with the used needle, and they wanted me to come in and give some more blood for an HIV test and a Hep C viral load. I went this morning, and now I have four recent punctures: both arms, both hands. I wasn't supposed to get a viral load test for another four weeks, so this might be interesting. It's quite possible that there is already no Hep C in my blood, which would be great for everyone.
It's kind of funny now that two nurses had to poke me on Friday so that now I don't know which one stabbed herself - neither of them seemed to at the time...
injection #10 - best yetFriday, August 30, 2002 A good injection today - just one stab, right in! Oh, the simple pleasures.
My injection site from last week is bright red, hot, and a little swollen. This is a bit worse than usual. It'll probably be better by this time tomorrow.
A good week. I rode twice. Wednesday I rode the farthest and fastest ride since starting on the interferon, and today I rode the same distance, but not quite as fast.
I never got the results of my testing on Tueday, or my regular blood test last Friday. I suppose no news is good.
injection #11 - almost half way doneFriday, September 06, 2002 Injection #11 went off without a hitch, right into the right side of my right thigh in one stab. Next friday's the halfway point - I can't wait!
A good week. Rode on Wednesday, a decent ride. I'm finding that I'm more irritable than I am usually, and I've read that this is a side effect of the treatment. I find I often have very little tolerance for frustration. I'm glad this seems to be the only psychological side effect - many report depression to the point of suicidal inclinations, but I've not experienced that.
I know this is quite subjective, but I'm pretty sure that my urine is now more normal colored. For the last year or so, since I was diagnosed, I've felt that my urine has been rather brown in color. Recently, I haven't noticed that my urine looks pretty much the normal color. Yippee!
half-way!Friday, September 13, 2002 Injection #12 went great. So only 12 more to go. My last injection should be on December 6, nicely before the Christmas break.
I'm feeling really well these days. No real fatigue, and no aches or "fluishness" around the injection time. I seem to be experiencing some mental irritation, especially Monday through Wednesday; I don't particularly think it's getting worse, though.
My injection sites continue to be red. At the moment the last three injection sites are visible, with the three week old one finally fading a bit. That was a bad one - I really have to wonder why. Last week's is large and red and warm, but not badly so.
Two good fast, short, rides this week. I've been riding mostly on Wednesday and Friday; with classes starting in a couple of weeks, I should start riding on Tuesday and Thursday. I think I can handle it.
eleven left to go!Friday, September 20, 2002 Injection number 13 went well, only 11 left.
I had been using four areas of my thighs to do the injections, but the area from four weeks ago is still red, though not badly. So, I used an area higher on my right thigh for today's injection. Last week's injection has turned red, on schedule, and is actually a bit tender at the moment.
Still pretty much side effect free, although tonight Jenni and I pretty much concluded that my hair is thinning. I have something of a habit of rubbing my head and lately I've noticed that my hair (always quite short, less than half an inch) "feels" different and in fact has been rather coarse, as though the hairs are of less uniform length. Plus, we both noticed independently today that you can see more of my scalp through the hair.
So I've got that going for me. Perhaps I'll start shaving my head more frequently (I already do it every two weeks). I'll put some pictures up here if I can provide evidence of the thinning - I think it's too subtle yet.
One good ride this week, the longest and fastest since starting the interferon.
the best possible news!Saturday, September 21, 2002 Well, I got a letter from my liver doctor today. In toto, it says Your HCV RNA is now negative!! really good response. This means that, as far as we can measure, I'm now free of the hepatitis virus. There is a possibility of relapsing, even after 24 weeks of therapy, but to be totally free after less than 12 weeks of therapy seems pretty good to me. In fact, this HCV RNA was done almost four weeks ago (on 8/27).
Naturally, I will have to continue for the next 11 weeks to really make sure that the virus is gone.
a good ride and lots of sleepThursday, September 26, 2002 I had a good ride today, the fastest since starting the interferon, and not really slow at all. With my rides this week, I've now put in more rides than all of last year, and it's not yet October. Yippee!
For some reason, I slept for about 11.5 hours last night, about 1-2 hours more than usual. Yesterday, Jenni and I had to get up early (for us) in order to do some work-related stuff. As a result, last night we went to bed about 2 hours earlier than usual. I slept from before 10 PM till after 9 AM today. I just have to wonder how much more sleep I'm capable of.
I am so glad I don't have a regular job.
injection #15Friday, October 04, 2002 Injection #15 went smashingly. One stab.
The first week of teaching for the autumn quarter is over. I feel really tired, but better than I did 48 hours ago. I've been having trouble sleeping since last Saturday night - I think I've been anxious about the rather drastic lifestyle change between vacation and teaching. I should be able to recover over the weekend and feel better next week.
I haven't been hydrating as well, since I've been spending time at the office. Although I take a liter of water with me in the morning, it's really not enough. I think I'll need to pick up another liter while on campus.
Otherwise, no interesting side-effects to report, and only nine more injections. Whoo-hoo!
aw crap...but ok!Saturday, October 05, 2002 Well, I went into my old friend a-fib (atrial fibrillation) at about 5 AM today. I've managed to stay out of it for almost three years now. This last week has been very stressful, apparently, and I've slept very badly after spending the whole summer getting 10+ hours of sleep per night. I think my body couldn't take it any more, and decided to indicate this by making me go to the emergency room.
Basically, I wake up with it, and decide to try to sleep the rest of the night, which gives me a few more hours of sleep, and then I call my cardiologist. Today the response was to just go to the ER. They're more vigilant about treating afib these days; when I first started having it, they'd let my beat irregularly for days. Now, the general suggestion is to cardiovert (i.e., put you back into regular rhythm) within 24 hours, which usually means "now".
So Jenni drove me to Northwest Hospital's emergency room, which, I must say, has about the nicest waiting/reception area I've ever seen (and I've seen a few). They had me fill out a little form with my reason for visiting. The receptionist said "there are two people ahead of you", which sounded fine to us, but then she read the little form and said "oh, you'll be next" and we went right in.
Thus began the longish day at the ER. They do blood tests, EKGs, and a chest x-ray to make sure my heart doesn't have a quiet squirrel running around in it. They have two ways of putting people back into sinus (regular) rhythm. One is pharmaceutical, using a drug I can't remember. The other is electrical, using a defibrillator. We tried the drug, but it didn't work; in fact it seemed to have no influence on my heart at all. So, we were left with the defibrillator, which I've had used on me 4 or 5 times in the past. They knock you out before doing it, which is really about the worst part because (a) it feels a bit like dying to fall asleep so fast, and (b) you have to wait around for an anesthesiologist. It really seems as though there are not enough anesthesiologists in the world.
So that's the "aw crap" part. The good part is that in the last three years they've made defibrillators better. Apparently they now use a less spiky dose of electricity, spreading the shock over a little trapezoidal envelope. This means that they can get results with far less electricity. At least once, I had to be shocked three times with shocks up to 300 (maybe 400?) joules. This causes burns on the chest and back where the conductors are, which make it hard to sleep with the itching (imagine the worst sunburn you've ever had). Also it causes soreness in the chest and shoulder muscles, for obvious reasons.
But today: a single 75 Joule shock, and I was back in sinus. Yippee! Should be no burns or soreness. And, I have to say, the less electricity that I have run through my chest the better, burns or no.
The anesthetic they used is this great "milk of magnesia" looking stuff. I've had it at least once before, and it's great. No icky stomach feeling, and it works very, very fast.
So, I just got home a few minutes ago, and I'm kind of groggy. Everyone at the hospital was really, really nice. I have to say that this is my usual experience with medical people; just about everywhere I go they are top notch (yes, generalizing is bad, but it's just my impression, and this is my journal after all).
I'm very hungry and thirsty. Before they do the electrocardioversion, you have to have a totally empty stomach, say, no food or water for 12 hours or some such requirement. I must now go replenish myself.
Oh, did I mention it's my birthday? Maybe that's why they were so nice to me...
Aw, double crap - but ok again!Thursday, October 10, 2002 Yes, I went into a-fib (atril fibrillation) again on Tuesday night just as I was lying down to sleep. This was rather disconcerting since I've never had two episodes closer than a couple of months, and here were two in less then a week.
Jenni and I cancelled our classes for Wednesday, and went to the ER in the morning. Fortunately no one recognized us from Saturday. As usual we were treated right away, and they decided to skip a lot of tests and not try the pharmaceutical conversion (since it didn't work on Saturday). We got the electical cardioversion right away. It took three jolts at 50, 75, and 100 joules before it worked, so my chest and back are a little burned but not so terribly. The anesthesia made me a little sick to my stomach this time, but not enough to make me lose my non-existant lunch.
This was the fastest ER visit I've ever had I think. We got there at 8:00 and returned home around 11:00.
I was really worried about what the cardiologists might do to me. There are a lot of drugs to control arrythmias, and a lot of them are scary: many can cause worse arrythmias. So I thought they'd want me on one of them for sure. But, the attending doctor (who, it turns out is in a-fib "more often than not") suggested that what I really needed was to relax and get consistent sleep. To help this happen he prescribed the drug Ativan, "used for the relief of anxiety, agitation, irritability, to relieve insomnia". I tried one last night before bed and I slept continuously for about 11 hours. I think it might just do the trick.
I really hate taking drugs, but I can't have more week-and-a-half's like the last week-and-a-half. Once I'm off the interferon, and my strength and resilience come back, I shouldn't need this sort of help, so it's all temporary.
injection #16Sunday, October 13, 2002 Number 16 went very well, I really do have the hang of the injections. Only 8 more to go!
I've been sleeping well for the last few days under the influence of Ativan. I haven't actually felt the effect of the drug, but my sleep is much more continuous, and that's made a lot of difference.
I don't know when I'll get back on the bike - maybe this week?
injection #17 and moreSunday, October 20, 2002 Injection #17 went well. Only 7 left!
I think I had some flu-like symptoms last night from the interferon. Haven't had any in a while - sometimes I wonder if I've actually injected anything.
Saw my cardiologist on Tuesday (10/15/02) about my pair of ER visits for a-fib. He wasn't overly concerned about it, and agreed that my tiredness and stress were probably the reason for them. Nevertheless, he prescribed 80mg of betapace twice a day to make sure that I don't have any more episodes. He left me on my usual Toprol XL, but cut down to 50mg (I actually bought a pill cutter; things like this really make me feel like I'm very, very old sometimes). The betapace has some actual anti-arrhythmic properties, which, unfortunately, means it's a little more dangerous than my other drugs. However, the plan is only to have me on it for six months (I'm thinking less) if I can stay out of a-fib.
So what drugs am I on, you ask? At this point it's like this:
Whoo, that's quite a bit. Well, the interferon and ribavirin will be gone in seven weeks, and the ativan is only for when I feel I need it, so that's something.
injection #18Sunday, October 27, 2002 Injection 18 went fine. Strangely, this week I couldn't tell where I had injected myself last week: for as long as I can remember, my previous site has been red and slightly swollen a week later; this time, no sign of it. Hmm.
I've been having a lot of anxiety(around my heart mostly) and depression(the number one side effect of interferon use) this week. I called my primary care physician (whom I never see) for a referral to some kind of psychologist or counselor or something (at the very least to get someone who can represcribe the ativan, because sleep loss and stress are my main concerns right now) but they've not called me back. I'll have to get on them tomorrow.
I'm really sick of all these drugs right at the moment.
injection #19Wednesday, November 06, 2002 The injection went fine. It really has become quite routine.
I can now count the remaining injections on one hand.
I have an appointment tomorrow with someone at the Primary Behavioral Health Network to discuss my seemingly psychological problems (anxiety, depression, irritability, insomnia, etc.) I hope something good comes of it; if nothing else I guess I should be able to get a new prescription for my sleep-inducing friend, Ativan, until I can figure out how not to need it.
injection #20 and stuffWednesday, November 13, 2002 Injection #20 went fine, though I had to stab twice into the bottle because I didn't properly draw the right amount of air into the syringe first. What a rookie mistake! This dulls the needle, and makes it just that much harder to stab myself with. I actually had sort of a charlie horse around the site for a few days.
My appointment with the psych person didn't result in much help, basically just "try deep breathing". I have another appointment next week, perhaps she'll have more suggestions.
Also, while she can prescribe some drugs (e.g., anti-depressants) she can't prescribe Lorazepam (so what am I doing here?). I called my cardiologist, and he said to call my PCP, who took two weeks to not refer me to anyone. She is supposed to call me tomorrow - fortunately I spend Thursdays at home.
This is all such whining. In the meantime, I feel pretty good. I'm sleeping well, which is good, even if it is on Lorazepam. My hair is rather thin, but not scarily so, and I keep shaving it once a week or so. I think I feel extra tired walking up stairs, sometimes super weak, but walking generally is okay. Just four more weeks.
doctor visit and injection #21Tuesday, November 19, 2002 I saw my liver doctor today, after having a blood test on Friday. Everything looks good. Apparently, the big tests will be 3 and 6 months after stopping treatment. If the virus stays away for those tests, everyone seems to feel it's as good as gone.
My weight is down to 146.3, which is quite low considering I was wearing heavy steel-toed shoes, jeans, t-shirt and sweater. I suppose nude I must be 143ish. I feel I am eating quite as much as usual, but I'm not riding these days, so perhaps I'm losing muscle mass (that's Jenni's guess). Oh well, at least when I start riding again I'll start closer to my ideal "climbing weight".
I asked my doctor for another prescription for Ativan (Lorazepam), and he readily gave me one that should last well past the end of my treatment, so I should be back to "normal" before it runs out.
Injection #21 went fine last Friday, only three left. My legs are often itchy, dry, red and/or swollen. Icky, but it will soon end.
injections #22 and #23Saturday, November 30, 2002 Last week, the injection was really strange. The skin near the injection site turned white and swollen while I was injecting the interferon. It's never done that before. It went away after a few minutes, but now, a week later, it's red, tender and a little swollen, similar to the unpleasant reactions I've had in the past.
The skin on my upper thighs (i.e., my usual site area) has been really irritated, especially this week.We've had colder temperatures here, and dryer air, so my skin generally has been drying and cracking, mostly on my hands, but even on my legs previous sites have cracked to the point of bleeding. A quick application of moisturizer (stingy!) seems to have improved the situation immensely.
This week's injection went fine yesterday. I had to use a site much closer to my knee than I have been using, due to all the irritation. I felt quite flu-ish today, and even took a Tylenol for the aches in my legs. I haven't done that for months, I think.
Only one more injection to go!
Another note about my liver doctor visit: apparently my second attempt to become vaccinated against Hep B has failed, so we're going to stop trying. Oh well. It's pretty hard to get, anyway.
I've slept well the last two nights without Ativan. I wake up every 2-3 hours, but have gone right back to sleep, and I have felt really well during the day, so I think I'm getting the right kind of sleep.
the last injection!Saturday, December 07, 2002
Yes, injection #24 finally happened.
blood resultsThursday, December 19, 2002
Had a blood draw last Saturday, a complete rundown. This was one week after stopping interferon injections, and a couple days after the end of the ribavirin. I really need another blood test to see if I've rebounded, but here's what the data looks like:
As you can see, my WBC is critically low. The nurse at my liver doctor's office said I should "avoid exposure", whatever that means. I suppose I ought not to lick public lavatories and such.
I'm also a little concered about the liver enzymes, now out of normal range again (the SGOT and SGPT). These are what indicated that my liver was dealing with the HPV before, and you can see how high these numbers were at the start of all this. I really hope I'm not heading back there...
And I don't know what's up with my glucose.
good blood newsSunday, January 05, 2003
I just got a letter from my liver doctor saying my Hep C RNA was still negative
at my last blood test, back on 12/14/02. Good news!
latest blood numbers look good!Friday, January 31, 2003
Things are going well. I'm feeling great, riding a good bit.
The blood numbers are below. I think the HCT (hematocrit)
is my favorite part: I think that explains why walking up
a big flight of stairs is not a problems like it was last fall.
another positive blood testTuesday, April 08, 2003
Another blood test with good results. The only number outside normal was the creatinine, which I understand is really fine considering my body size.
There was no hepatitis RNA test this time, but the liver enzyme levels (SGOT and SGPT) indicate that the liver's not complaining, so my doctor takes that as an indication that the virus is gone. He also feels that if it hadn't returned by now, it likely never would. Yay!
For some reason there were some new tests, the ones at the bottom. TSH is a thyroid test, while LDH and GGT are tests for tissue damage. Since the latter two are nicely normal, I think this is further indication that my liver is no longer under attack.
The Six Month CheckWednesday, June 18, 2003
This was the big one, and it came out great. The numbers are below, but the most important one is this: HEPC RNA QUANT <60. The reference range is "<60", so this is as good as undetectable can get with this test. This is the best available indicator that I am "cured" of hepatitis C. I'm pretty happy with that.
The plan now is to do a blood test and a liver echosound every six months to make sure that if my liver starts growing tumors, we know about it. I'm getting an echo next Monday, in fact.
More good testsTuesday, August 3, 2004
Haven't been updating much lately. All is going well. Had a liver ultrasound that came out "normal - no liver tumors" which is nice. Also, I had an alpha fetoprotein test that was also normal.
New blood testTuesday, September 28, 2004
Had a blood test with a general physical, so I thought I'd include it. The key thing to note here is the AST and ALT numbers which continue to be very low. I wonder why my hematocrit (HCT) is so high. Also, I've thrown in cholesterol numbers for the first time. My HDL is "low". I'll be talking to my doctor about this soon.
Another blood testThursday, November 10, 2005
Another excellent blood test (this time including my cholesterol).