Gregory M. Ledet

Yesterday was my appointment with the GI PA, but I just couldn’t make it.  The car was acting up, and so was my stomach.  She ended up calling me and we went over my latest blood tests, so I guess I’ll go over them with you guys now!

Everything looks par for the course with this treatment.  White count and red count are both low, as is hematocrit.  Albumin is high as well.  My AST is 67 and my ALT is 58 (slightly higher than last time, but I’ll chalk that up to changing my pain meds from Vicoprofen to Percocet and the APAP in it).  The AST is high, but not bad.  The one that stuck out was my TSH.

The normal range for TSH is 0.47 to 4.68 and mine came in at 5.85.  It’s not terribly high, but my hep doc wanted me to talk with my family doc about it, so I went in to talk with her today.  Let me explain this TSH thing to you guys.

The thyroid gland produces thyroid hormone. When it functions properly, the thyroid is part of a feedback loop with your pituitary gland. First, the pituitary senses the level of thyroid hormone that the thyroid has released into the bloodstream. The pituitary then releases a special messenger hormone, known as “Thyroid Stimulating Hormone” (abbreviated as TSH). TSH stimulates the thyroid to release more thyroid hormone.

When the thyroid, for whatever reason — illness, stress, surgery, obstruction, or, in this case, peginterferon therapy — does not produce enough thyroid hormone, the pituitary detects this reduction in thyroid hormone, and it moves into action. The pituitary then makes MORE TSH, to help trigger the thyroid to produce more thyroid hormone. This is the pituitary’s effort to return the system to “normal” and normalize thyroid function. There, a TSH that is higher than normal suggests a thyroid that is underactive and not doing its job of producing thyroid hormone.

Thyroid dysfunction is normal for people to experience during interferon therapy.  Because of this, my family doc isn’t too concerned at this point, but she wants to run some more tests.  I’m going to have T₃ and T₄ test done tomorrow morning to see exactly what the thyroid hormone levels look like.  I’m also having a lipid panel done, so I need to be fasting to have it done, hence the reason for tomorrow morning.

Hopefully everything works out OK and I don’t have to spend the rest of my life taking Synthroid.  My wife had her thyroid removed years back, and I’m not looking forward to that.  So, that’s about it for now.  Other than that stuff, and a change from Zoloft to Wellbutrin, it’s been pretty normal.  I have been a bit edgier than normal, and more prone to anger, but I’m trying to keep that under control.  I know that I just over a month left to go on this, so I can’t wait for it to be over.  Once this treatment is over, you can bet that there’s going to be a party somewhere!

Today started off horribly.  The doorbell rang at 10:30 and I was still sleeping, seeing as I didn’t go to bed until 4am.  I knew my wife was downstairs, but I still wanted to see what was going on.  I made the first step and my feet slipped out from under me.  Down the stairs I went.

Not a good pic, but click for larger image

I screwed up my arms pretty good, but that’s just the part I can show you here.  My lower back and and tail bone are destroyed.  My neck is killing me.  It hurt like hell when it happened, and now it’s getting worse as everything tightens up.  I only thought that I wasn’t doing good with the treatment, now I have this to contend with.  Trust me when I tell you… I’m in a shitload of pain.  The best part about it?  The doorbell was UPS delivering more Pegasys.  I went through pain to take delivery of pain.  It was so loud when I fell down the stairs that the neighbors came running over to see if I needed help.  I couldn’t move for about 10 minutes.

While I was sitting here in pain I tried to get some things done knowing that I have company arriving tomorrow and I had a doctor’s appointment today at 3 and it was going to take an hour and a half to get to the doctor’s office.  This is where to good day comes into play.  The doctor’s appointment was my first meeting with the PA that will be taking care of me during my Hepatitis treatment.  It was also my first look at the blood work I’ve had done since I started treatment.  We got to the office and everything went OK at first.  We went over the CBC and CMP info and I was informed that my white count was a little low, but my AST and ALT were looking better!

Click the image for full spreadsheet containing values

For those of you that don’t know, the AST and ALT are liver enzymes. Liver enzymes allow doctors to learn about the health of your liver. There are thousands of these enzymes in the liver and blood stream, but two of them — known as AST and ALT — are especially useful for determining the severity of liver disease.  When liver cells are damaged, AST and ALT are “leaked” into the blood stream.  The amount of these enzymes give the doctor an idea of just how screwed up your liver is.  When the levels are high it causes concern because the liver isn’t functioning the way it should.  In simple terms: if AST and ALT are high, that’s BAD.  Liver enzymes are like golf scores.  By looking at the teal and orange lines in the chart above, you’ll get an idea of what my liver enzymes have been doing this year.  I started treatment on Nov. 20th, so they have gone down since then.  Click that chart and bring up the full numbers and the spreadsheet.  Lots of info in there, including the numbers that you need to make that chart look right.

So, now we know that my liver is working a little better because they’ve gone down since my last test.  This is a GOOD thing, but it isn’t what I wanted to know.  I wanted to know my Viral Load.  That’s the test that I needed.  It’s going to give me a number and that number is the amount of virus found within a given volume of blood.  My last test, in September, gave me a viral load of 1,720,000 IU/mL.  That mean there’s 1.7 million of those little viruses swimming around in that vial of blood.  I had the viral load done again on the 21st and, I’m happy to say, it came back UNDETECTABLE!  That’s right!  The HCV RNA was not detectable in a range of 43 IU/mL to 69,000,000 IU/mL.  It could still be there, but it’s less than 43 IU/mL.  The next test I’m going to have done will be able to detect it down to 10 IU/mL.  If it’s not detected there, then it’ll be save to say that I’m kicking it’s ASS.  Or at least, I’ve kicked at least 1,719,957 of their asses so far.

5 more months of treatment and it’ll be looking VERY good for me attaining SVR.  This is what this treatment is all about.  It’s about it working.  It’s about me beating it and not letting it beat me.  And this is also help for all of you out there that are looking into starting treatment.  There is hope!  I’m a guy that started treatment before and stopped after 4 weeks.  I had well over a year to let the virus mutate on me and build an immunity to the treatment, but it didn’t.  It’s still getting it’s ass kicked, and as am I.

Speaking of getting my ass kicked, falling down the stairs this morning really sucked.  My body is really starting to tense up and hurt like hell.  I’m eating pain pills right now like mentos just trying to take the edge off.  I mean hell… I sat on my nuts when I fell.  Yes, my full 240 lbs of weight landed on my testicles as I was dropping down the stairs. It still really hurts…  Not to mention that I popped a cyst on my kidneys when I fell (I have Polycystic Kidney Disease too) and I’ve been pissing blood all afternoon.

I’m still going to keep updating this blog, especially with info on my blood tests and everything.  But the question still remains… How do you feel my day went.  Was it a good day?  Was it a bad day?  Or, was it just Tuesday?

I’m still sleeping all day long.  I can’t believe that today is already Wednesday and that the day is nearly over.  I guess because I’ve been sleeping so much, I feel like I just slept the week away.  I’ve been trying to get some stuff done, mainly working on a few websites and trying to get the house cleaned up a little bit, but with all the sleeping it’s making things hard.  I’ve also had a monster headache for the past few days.  The injection sites on my stomach are bright red, swollen, and itchy.  I’ve been putting a topical antihistamine on there, but it’s still not helping.  The dry eyes have kinda cleared up, but they are still a little dry.  Nothing that some eye drops can’t handle.

Other than that, things have been going OK.  The joint and muscle aches haven’t been bad at all since I woke up on Monday.  I’m not looking forward to Friday though.  I’m going to have to take Friday’s injection in my thigh because I’ve taken the last 2 in my stomach and I need to let that heal for a while before I go rushing back in there.  The problem is, this is a subcutaneous injection, not IM and I have very little fat on my legs.  This one is going to hurt like hell, but that’s all part of the treatment!

I didn’t want to get out of bed this morning. I’m having some body aches and my internal thermostat is all screwed up.  I’m taking delivery of a new recliner tomorrow, so I had to get off my ass and clean the living room and vacuum.  That was a process that should have taken all of 10 minutes, but turned into an hour ordeal because I can barely move.  I’m still sitting in my recliner, moaning in pain, and bitching about how bad I feel.  I wish I could just stop sweating for 5 minutes though.  My wife is wrapped up on the couch in flannel pants and sweatshirt, curled up under a comforter, yet I’m sitting here in a pair of shorts complaining that the backs of my knees won’t stop sweating even though I have the AC on and set to 65.

I wanted to try to get out of the house today and do something, but that’s just not going to happen.  I did finally finish the Google Latitude widget that I started working on the other day, so at least I got something done.  I’m trying to get my consulting business website finished, but because the meds are messing with my head and I’m having to take the Depakote to keep me sane while on the meds, I’m having a hard time concentrating long enough to come up with good content for the site.  Another drawback of treatment… lack of concentration.  I can’t even watch a movie in the days following an injection because it’s hard for me to concentrate through the whole movie.  Oh well, it’ll be over in 22  more weeks…

I’m starting to have some new things pop up on me.  The main thing being dry eyes.  I mean VERY dry eyes.  I can put eye drops in and 3 minutes later they feel like I’ve been pouring desiccant into them.  Another thing is a very bad taste in my mouth in the morning.  It tastes like a cross between leather and guano.  And finally, the thing that I’m worried most about; a bad sweet tooth.  I want something sweet all the damn time.  My appetite has gone to hell, but I constantly crave candy and kool-aid.  That’s just plain weird…

-Greg

I’m feeling a lot better this morning. My headache is gone for the most part, as are the body aches. This is normal for the treatment though. You are going to feel bad for the first few days after the injection, then you start to feel better just in time to do it all again. Because I’m feeling better, there’s no need to do a video. Plus, Windows ran updates last night and rebooted into Ubuntu and I’m too lazy to install video capture software today. That is one of the side effect that I am still feeling, laziness. I don’t have a whole lot of energy to do much of anything. I’ve even cut back on my smoking because I’m too lazy to walk outside to smoke a cigarette.

One thing that isn’t bothering me yet, and I thought it would, was quitting drinking.  Yes, during liver treatment you have to quit drinking.  No beer, no scotch, no rum, no anything.  I may pick up some Buckler NA beer.  It actually doesn’t taste that bad…

I guess I should take this time to educate you guys as I try to do everyday, but there’s really not a whole lot to say today, so I’m going to go ahead and thank you for reading today’s blog and I’ll put something educational up tomorrow!  Thanks!

-Greg

Things are a little better today.  I’ll go ahead and get the video out of the way now, then we’ll talk about SVR.

Yeah, that rash is still aggravating me, as is the injection site.  Muscle aches are coming on a little stronger as I type this, but nowhere near what they were Saturday morning.  Now, let’s talk about Sustained Virologic Response (SVR).

SVR is the closest I’ll get to “a cure” for hepatitis. Sustained virologic response, or SVR, is the goal of this peginterferon/ribavirin treatment. This treatment I’m on doesn’t necessarily eliminate the hep C virus from my liver. It can, however, suppress the virus to undetectable levels for an extended period of time. In clinical language, this is called a “sustained virologic response,” or sustained response. It means that during the six months after I complete treatment, there is no detectable hepatitis C virus in my blood.

SVR is a good thing. Studies have shown that with a six-month SVR (which means no detectable virus in your blood for six months after finishing treatment), relapse occurred in only 1-2% of patients. So, for every 100 people who finished treatment and attained SVR, the virus will return in only 2 of them. However, for these people, the virus never really left. The medicine was able to eliminate most of the virus (so much that medical tests couldn’t detect it), but after treatment ended, for whatever reason the virus was able to continue replicating itself.

Early SVR is beneficial. Since the liver has incredible regenerative ability, achieving SVR as quickly as possible is important. This is important because some liver damage can be reversed if the cause of the damage is removed. After SVR is reached and depending on the degree of damage from the virus, the risk of hepatocellular cancer is reduced and about 25% of people see an improvement in fibrosis.

SVR compares one treatment to another. For those of us in treatment, SVR is the goal. However, for physicians and scientists researching new hepatitis treatments, SVR is also used to evaluate new medicines and compare them with proven therapies. For example, depending on the genotype, treatment with interferon alone usually achieves SVR in 15% of the patients. When interferon is combined with ribavirin in the same genotype, SVR is increased to 70% in some people.

Tomorrow I’m going to try to get into genotypes as well as the genotype that I have and what my chances at SVR is.

-Greg

References: About.com and hivandhepatitis.com

I just went upstairs to take my shower for the evening and when I was drying off, I felt pain in my face as the towel went across it.  It almost felt like I had a very bad sunburn on my face.  Once the mirror had cleared, I noticed a very bright red rash on my face.  The picture below really doesn’t show just how red it is (it’s only the shitty camera on an iPhone).  I’ve provided a “before” picture for comparison (click for larger).

Before	After

If you’re thinking “man, that really sucks”, you’re right.  It does suck.  I wish I had a camera and proper lighting to show what it really looks like.  Every time I run my hands across my face, I can feel where I “scratched” for about 45 seconds after, as though my hands were still there.  It goes from my chin to my hair line and is very bad on my chin under my goatee and just above my mustache.

I’ll continue to post any weird things that happen to me on the course of this treatment and I’m going to make videos as often as possible!

***EDIT***

Here’s a new pic, taken about 2 hours after the first and you can start to see the rash on my face getting darker and redder.  I’m starting to itch all over my body and I just took 3 Benadryl to help with the itching and help me sleep. (Click for larger image)

It's starting to get worse

Day 3 sucks, but nowhere near as much as yesterday and the day before did.  I still have bad body aches and a monster headache, but it’s starting to clear up some.  The one thing that really sucks is the injection site.  One of the side effects of the injection is “pain, swelling, or redness”.  I’m getting all 3.  In fact, check out my fat belly…

It’s kinda hard to see in that picture, but I’ve drawn a rough circle around where the swelling and redness is.  That dark spot within the circle is where the needle went in.  Anytime something brushes across the injection site, like my shirt or something, it feels like someone is running 80 grit sandpaper across my skin.

I’m hoping that I’ll wake up tomorrow finally felling rested.  I haven’t really slept in a week.  I was all nervous about starting this treatment, which screwed up my circadian rhythm, and then I started the treatment, which doesn’t let me sleep all that much.  Even taking Lunesta and Ambien I’m having trouble sleeping.

I’ve decided not to do a video blog today… I’m still very tired and I just don’t have the energy to do it.  I hope this is enough!  I’d like to thank all of you for the support that I’ve gotten over the past few days.  It means a lot to me.  Now, let’s talk about dem Saints!!!  10 and eaux!  I would love to see a Black and Gold Superbowl!

-Greg

Today marks day 2 of this 6 month ordeal. I barely got any sleep last night due to the pain I was in.  Imagine the worst flu you’ve ever had… You know those muscle aches and cramps all over your body?  Yeah, it’s like that, but multiplied by eleventy billion.  This chills are horrible.  I did nothing by sweat all night, even though I was freezing.  My moaning in pain forced my wife to come sleep downstairs and I couldn’t keep still.  My legs are VERY restless right now.  I also have a rocking headache and it feels like all the major muscles in my body are bruised.  That’s not to mention the fact that it is very hard to concentrate on anything (like this).

I didn’t remember it being this bad.  I’m not saying that everyone is going to feel like this, but the majority of people are once they start this treatment.  I can definitely tell you that I understand why most people don’t make it through the treatment.  Even though they know that they are likely to die if they don’t go through this treatment, there’s a lot of people that would rather die than to go through this living hell.  I found a nice little quote on a doctor’s website:

All told, only about 25 percent of the patients we see complete medical treatment for their hepatitis C.

Ain’t that screwed up?  That’s a 75% washout rate!  So, yeah… it sucks.  I’m going to try to keep a daily journal of everything here, but I doubt that I’ll feel up to it every day to sit here an type.  Plus, I can’t keep my eyes open and my concentration is shot, but other than that stuff, I’ll do it!

Thanks to everyone out there supporting me through this.  Like I said… this treatment amounts to chemotherapy, so having all of you here for me makes it a lot easier!

-Greg

This one is for my science geeks out there.  This is some SERIOUS stuff.  Let’s take a look at it from the inside…

Pegylated interferon alfa-2a is some heavy stuff.  It weighs in at 40000 g/mol.  You read that right, 40000 g/mol.  Well, when your chemical formula is C₈₆₀H₁₃₅₃N₂₂₇O₂₅₅S₉ you are going to be VERY heavy.

Interferons are proteins made and released by the cells of most vertebrates in response to the presence of pathogens — such as viruses, bacteria, or parasites — or tumor cells. They allow communication between cells to trigger the protective defenses of the immune system that eradicate pathogens or tumors. Pegylation is the process of covalent attachment of polyethylene glycol polymer chains to another molecule; in this case, interferon.  The covalent attachment of polyethylene glycol to a therapeutic protein like interferon can “mask” the agent from the host’s immune system and increase the hydrodynamic size of the agent which prolongs its circulatory time by reducing renal clearance.

Let me put that in English for those of you that aren’t molecular scientists.  They throw a bunch of this interferon in a bowl with some Carbowax and get mixing.  The carbowax hides the interferon from by immune system and makes it bigger so it stays in my system longer.  That’s why this stuff is so damn thick.  And that’s why I feel like I’ve been kicked in the stomach.

Now you know all about pegylated interferon alfa-2a!