Friday, May 23, 2008

Last Post

Well, this day came a few months sooner than I anticipated. I just got my final Hep C viral load test results, and I'm still NEGATIVE, which means that by all measures and standards, I have cleared the virus permanently. That's it, I'm done.

I believed this day would come, but there was always this little itch of doubt at the back of my mind. That itch just got scratched for the last time.

I'm inclined to say I'm cured, but there is the remaining damage to my liver, caused by 20+ years of playing host to the virus. However, I also know (thanks to other tests) that the damage hasn't gotten worse since I finished treatment, and in fact, might actually be showing signs of modest healing.

Looking back at the odds, this was a serious long-shot. Hep C, type 1a (which I have -- no... HAD!) is one of the most difficult to treat. With the full cocktail of Peg-interferon plus Ribavirin, the odds of success were about 50-50... maybe a little better. But if you read back through this blog, you'll note that I had to drop the Ribavirin early on in the treatment, thus lowering my chances of success to 10%. Maybe even lower since I'm a hemophiliac, coinfected with HIV.

If you want proof that mind-set is everything, here it is.

So this is the coda to the symphony that was my experience with Hep C. The story is told and all loose ends have been tied up. That said, this will very likely be my last post on this blog.

I'm going to leave the blog live, as I've always intended it to be a resource for other people living with Hep C and facing the question of treatment. I genuinely hope you find it helpful, and wish anybody in that position who's reading this the best of luck with whatever decision you make. The treatment options are continually improving, and that's cause for optimism.

As before, if you ever feel inclined to drop me a note to ask questions about treatment or just to let me know you saw the blog... by all means, do so!

Be well.

Sunday, December 30, 2007

PDF Digest, Finally!

Hey all,

Short post today to wish you all a very happy and healthy new year, and to let you know that I've finally finished converting my blog to a downloadable pdf file that you can read through from start to finish (rather than Blogger's cocked up "most recent post first" order). I wrapped it up at the last July post, as everything that follows really doesn't have much to do with treatment. I also cleaned it up and had a little fun with the layout (iWork Pages is cool!) so it's a little less... sterile.

If you have a slow connection, brace yourself... it's a big file (almost 15 MB!)

You can download it here.


Happy reading.

Cheers!

Friday, July 27, 2007

Epilogue?

As mentioned in my last post, I've cleared the 6-month post-treatment hurdle, which means I'm pretty much out of the woods as far as the HepC virus is concerned. We knew going in (from my biopsy) that there was some liver damage (I have what they term "compensated cirrhosis"). Basically, I have some scarring and nodules or isolated pockets of cells, but my liver seems to be functioning more or less normally, despite that fact.

In any event, the docs want to keep an eye on my liver so they can respond to any threatening changes quickly, although we don't expect the cirrhosis to get any worse now that the virus is cleared and the inflammation has gone down. This means an abdominal ultrasound every 6 months. My last ultrasound (back in January) looked pretty good, and showed very little change from the prior test, taken before I started treatment.

That brings me to the current turn of events. I had an ultrasound last week that showed some new abnormalities that my treatment team wanted to investigate further, just to rule out anything serious. Note here that I'm feeling great and my labs are more normal than they've ever been. So yesterday, I had a follow-up MRI (I'm just waiting for the machine that goes ping!), and it turns out that there are a few (maybe half a dozen) small cirrhotic nodules, and while they don't believe they're cancerous, they want to keep an eye on them and do another MRI in four months. I get that they're doing everything they know how to keep me alive and healthy, but for Christ's sake... when does it end?!

Yeah, I'm a little anxious and frustrated about this. Am I going to let it get me down? Of course not.

Anyway, enough of that. On to more positive things, I promised pictures from our trip to Montana, and here are some of my favorites. I shot nearly 150, so this is just a small sampling.

Taken from the patio of the East Glacier Lodge


Just outside of the park on the East side (Blackfeet Reservation)


On St. Mary's Lake; yes, the colors are THAT vivid!


Cascade fall near the top of the Road to the Sun
(which was still closed near the summit, due to weather damage)


And lastly, a friendly and surprisingly tame doe who
hangs out near the Road to the Sun and greets tourists.
At one point, she was about two feet away from me,
despite my efforts to keep at a 'recommended' distance.

Tuesday, July 10, 2007

WAAAAAAAAA-HOOOOOOOOO!!!!!


Yep. I got my labs back. HepC RNA (PCR): NEGATIVE

For those of you that haven't been following my blog, this is my six-month post-treatment followup test... so the viral load coming back negative is a pretty big deal. Actually, it's a WAAAAAYYYYYYYY big deal! :-)

My other lab results also look really good. Rather than throw a lot of numbers around, here are charts of my labs for the last year or so. They paint a pretty obvious picture of the state of my liver. The red line represents the high level of the "normal" reference range. Explanatory text is from the Healthwise Knowledgebase.



AST - Low levels of AST are normally found in the blood. When body tissue or an organ such as the heart or liver is diseased or damaged, additional AST is released into the bloodstream. The amount of AST in the blood is directly related to the extent of the tissue damage. After severe damage, AST levels rise in 6 to 10 hours and remain high for about 4 days.



ALT - ALT is measured to see if the liver is damaged or diseased. Low levels of ALT are normally found in the blood. However, when the liver is damaged or diseased, it releases ALT into the bloodstream, which makes ALT levels go up. Most increases in ALT levels are caused by liver damage.



Total Bilirubin - A bilirubin test measures the amount of bilirubin in a blood sample. Bilirubin is a brownish yellow substance found in bile. It is produced when the liver breaks down old red blood cells. Bilirubin is then removed from the body through the stool (feces) and gives stool its normal brown color.

Bilirubin circulates in the bloodstream in two forms:

* Indirect (or unconjugated) bilirubin. This form of bilirubin does not dissolve in water (it is insoluble). Indirect bilirubin travels through the bloodstream to the liver, where it is changed into a soluble form (direct or conjugated).

* Direct (or conjugated) bilirubin. Direct bilirubin dissolves in water (it is soluble) and is made by the liver from indirect bilirubin.

Total bilirubin and direct bilirubin levels are measured directly in the blood, whereas indirect bilirubin levels are derived from the total and direct bilirubin measurements.



AFP (alpha-fetoprotein) - In men, nonpregnant women, and children, alpha-fetoprotein in the blood can mean certain types of cancer, especially cancer of the testicles, ovaries, stomach, pancreas, or liver are present. High levels of AFP may also be found in Hodgkin's disease, lymphoma, brain tumors, and renal cell cancer.


More important than charts and graphs and labs and tests and blah blah blah... I simply FEEL better. Now I have the peace of mind that goes with knowing that my liver is not under constant attack by those nasty little freeloaders (HepC virii), and I may have bought myself some longevity. Admittedly, I have one last hurdle to clear (the 18-month follow up, a year from now), but in my mind, this was always the big milestone. Not completing treatment... not clearing the virus... coming back clean at 6 months post treatment.

After all this lengthy medical blather, and charts and whatnot, I aim to keep my promise to post some pix from Montana in my next post. I've just been busy holding my breath for the last week. :-)

Laters!

Thursday, June 28, 2007

No, I really haven't dropped off the face of the earth!

Geez Louise! It's been almost two months since my last post. I swear, it's not because I've gone off to die under a rock or anything... just been a busy summer. At the moment, I'm on a much-needed vacation in one of the most beautiful places on earth: Glacier National Park, Montana. (pictures to follow)

To my blogger buddies, know that you are on my mind, despite my silence. I'm kicking around an idea with Heather (my lovely wife) to start taking this blog in a new direction, so things will probably start to pick up towards the end of summer. I'm also going in for my 6-month labs when I get back, so I'll be posting about that.

Anyhow, I hope you're all well. For those of you still on treatment, or considering it, hang in there, and listen to what your body and intuition are telling you.

More soon...

Tuesday, May 01, 2007

Okay, so here's what I'm thinking...

Obviously, it's been a while since my last post. The reason is that I'm not really sure what direction to take the blog, now that I've finished treatment. I originally envisioned it as a treatment diary, but I think at this point that there should be some continuity... and have been encouraged in this by my blog buddies.

I'm a bit conflicted with regard to what I should write about:

I already have a web site dedicated to my artwork, so that wouldn't make much sense here. I've dabbled in the past with blogging about artworld news, but it went nowhere, REAL fast.

I'm a bit of a wonk with strong political views (progressive), but there's enough noise out there that I doubt I'd add anything to the general discourse; besides, Josh Micah Marshall, Firedog Lake and Daily Kos cover things way better than I could, and are sufficiently dedicated to the endeavor that they fact-check what they write... I'd just be spouting opinions, and who wants that?!

This blog started around a specific medical issue (or combination of issues, I suppose), and it wouldn't make sense to shift gears and wander off in a completely different direction.


All of that said, here's what I'm thinking: in addition to occasional updates about my own health (and particularly the HepC follow-up labs), I thought it might be interesting to blog about the state of the American healthcare system, public policy and my own experiences with "the big machine." I'd also include posts about any interesting research I come across, and maybe the state of hemophilia, HIV and HepC care around the world. I would do my best to take a legitimate journalistic approach (ie. fact-checking), but it will undoubtedly still be shaded with my own perspective.

I'm just kicking the idea around for now, and am totally open to feedback or suggestions. Post a comment and let me know what you think.

Wednesday, April 11, 2007

It figures!

I get through 48 weeks of treatment that's supposed to give me "flu-like" side effects, with a bit of fatigue and little more. I finish treatment and start feeling really good, and wham! I get the real flu. Ick. I suppose it could be worse... I was only down for a couple of days (I'm currently recuperating), but I still could have just as easily done without it. :-P

I can just hear all the lectures I'm going to get from my well-meaning health care team about how important it is for me to get the flu shot every year. As I've always done before, I'll calmly explain that whenever I get the flu shot, I get the flu, really badly (like out of commission for two weeks), so I prefer to take my chances.

Oh well... into all our lives a little rain must fall.

Editors note to AH Robbins, makers of NyQuil: Your product is great, but it tastes NASTY!!! I mean the daytime formulation is tolerable, but the Cherry nighttime stuff is revolting, and the green stuff is downright abhorrent! What on earth possible reason do you have for torturing the already miserable? I suppose the argument could be made that it discourages alcoholics from gulping it down... but then anybody buying it in large quantities is more likely trying to stock a meth-lab than tie one on. Give us a break, please!