Quick followup -- Undetectable

Still undetectable. That's a good thing. For practical purposes, I'm cured. Anticlimactic, but I'm not complaining. Kids are well. Oldest married and teaching elementary school. Son is, well he's getting there. Some job and education setbacks, but nothing serious. He'll get there. Youngest started college. We're officially empty-nesters. Occasionally notice how quiet things are, but then get called off to something else. Life is good. No complaints! Best to all.

Two years? Really??

Those people at Google are updating things and I discovered an email urging me to recover my blog. It took a bit, but I finally got in. Since I'm here, I may as well give a brief update. If you've followed this journey, you know that I appear to have beaten the bug. Hoping that's still true. I dropped a blood sample off at the lab yesterday and I have an appointment with the GP for a physical next week. Nothing has led me to think that the bug is behind me. Knocking on wood nonetheless.

I've mentioned my friend Ken here. He is once again in treatment. He has Genotype I and it came back on him after the first go-round. He took a second shot at the beast with Infergen shortly before I started treatment. It put him in such a horrible mental state that he had to drop after a few weeks. I saw him the other day and he's once again in the midst of the fight. He's using a new regimen — Telaprevir? — and the outlook is good so far. The virus was undetectable after three months which could mean a shorter time on treatment.

My life post-treatment has been busy — making up for lost time. Eldest daughter got married last year to a great guy who we are happy to claim as our own. Ten days before she got married, I got a layoff notice from my employer. They are well-known for calling their layoffs "Resource Actions." Google it and you'll know where I worked. It being too close to the wedding to do anything different, I kept my mouth shut and had a great time. Less than a month later I had a new job doing very close to what I had been doing and making more money (plus, got to bank the severance). All things work together for good. Son is still at school, but having second thoughts about finishing. College isn't for everyone and he's not sure what he wants to do. See above. He'll be fine. Youngest is off to college in the fall. At that point Wife and I will have the house to ourselves. I'm sure we'll find something to keep ourselves busy.

In all these post-treatment check-ins I have tried to encourage anyone reading who is on or contemplating treatment to be encouraged that people disappear from the forums. There is a world out there, and if you spend a year on treatment, there's much to be done. Hang in there. There's an end to it and it can be a really great one. Anyone in or facing treatment should feel free to drop a line. My somewhat-obfuscated address is fretblog (commercial at) gmail. If I start getting spam at this address, I'll hide it again.

I'll check back here when I get my results back. I have every reason to remain optimistic.

Best

Chris

Check-in after a long absence

I loathe spam, spammers, and everything related to them. But "all things work together for good." A spam comment prompted me to open this blog for the first time in over a year. Since I'm here, I may as well check in.

I've been over to visit my friends the Nomads a few times. My recurring theme there is that the reason you see so many folks who relapsed in the forums and on the blogs is that they are still fighting the bug. We who are fortunate enough to have beat it are making up for lost time. It's a full time job.

The three years since I completed treatment have been busy. Elder Daughter is in her junior year at Northern Arizona University and got engaged on New Year's Eve. Wanna-Be-Son-In-Law had the talk with me at the shooting range. I had ready access to lots of weapons and we both survived, so I guess he'll do.

Son is in the Marine NROTC program at the University of Arizona. He has this notion that he wants to crawl through the mud with a knife in his teeth. So we go north to see one, south to see the other. It's a hassle.

Youngest is a sophomore an high school and gets lots of attention. She just finished her season as a cheerleader and wants to take a tumbling class. Cheerleaders get hurt. They throw them around over a wood floor or a track. Youngest weighs about 90 pounds, so she's the one they fling around. She also expects to start driving this year. I'd swear she was eight years old last time I checked. Henry David Thoreau: "A father's life is one of quiet dread."

The big event for me since completing treatment is gathering a collection of my dad's writing into a book. We lost him to colon cancer the year before I went on treatment. Two rough years, '05 and '06. He was a magazine editor who moved into political stuff. He was well-known in his field and what he wrote remains important today. The book was something he and I had talked about for years. I had been working on it off and on for a couple of years before he got sick. I didn't do much on it during the year he was sick because I was attending to other matters. I had just picked it back up when I found I needed to go on treatment. Frankly, I think it's a better product for the hiatus. Feedback has been good, although sales are slower than I'd like. It's getting some good reviews now and I think it will pick up.

If you've been touched by HCV, best of luck and blessings. You have my prayers. If you have questions for me, post a comment here or PM me (I'm cwk) in the Nomads forum.

Come to think of it, Doc wanted to see me this month. I think he's going to want another PCR. So, something else to talk about here.

All best,

Chris

"Suburban Mom" says...

suburban mom said...

update:
I am genotype 3a and I saw the GI doctor yesterday. He was very encouraging. I will most likely start treatment after Christmas.

Your time frame is similar to mine. Yes, good idea to wait until after Christmas. A poster on one of the forums commented that treating Hep C is not an emergency. It's a slow bug. That's both a blessing and curse. It's slow and insidious. More like a leak in the basement than a fire in the attic. Frankly, it's much better suited to the state of our medical arts. You have time to put things in place. I'd suggest getting long term disability insurance lined up if that's an option. That, and getting regular blood tests were the only overt actions I took when I learned I had been exposed to the bug.

Note that I say I learned I was exposed to it -- I never had a viral load test or showed any symptoms until August of 2005. I had a life insurance questionnaire that asked whether I had ever been diagnosed with any liver disease. I accurately answered in the negative. I had never received a diagnosis. I knew I had been exposed, but at the time I filled out the form I had no symptoms and was, as far as I could tell, virus-free. Maybe I split hairs, but I think it was an accurate statement.

'Burb Mom, having genotype 3a, you're in a lucky group. It typically indicates a 24-week treatment, although that may change with your situation. Basically, your bug is easier to kill, so be thankful small favors. As we head into October, typically the time that Americans make their insurance arrangements, you might also consider putting some extra dollars in a health care reimbursement account. Better to pay for the likely extra medical expenses with untaxed dollars.

Good luck with treatment. I'll be following your blog, so keep it updated.

Chris

Still in my undies...

Just posted the following to the Hep C Nomads Forum and to the UK Forum

Hi all --

Haven't been here in a while, partly because I had no new news, and partly because I've been crazy busy. But I wanted to share this. I dropped off the sample for my 18-month post tx bloods a couple of weeks ago and just got the call from Doc. UNDIE-tectable! Doc, being a conservative fellow, says I'm "still in remission." I look at it like this: It's gone. It's stayed gone. There's nothing to make me think it will be back ever! I'm done and I feel great. No significant souvenirs of treatment that aren't attributable to the calendar.

To those facing the start of treatment: You have to make your decision based on your situation, but I'm proof that there are good outcomes.

To those in the throes of treatment: Hang in there. There's a finish line and it's worth the work to get there. This bug is beatable, but you have to do your part. When you really start feeling sorry for yourself (you do, admit it!) consider the blessing of being reminded of your own mortality without having to actually face it.

To everyone dealing with this disease either directly or indirectly: There are good results. Keep in mind that this group's post-tx crowd is skewed toward those who didn't have a good outcome. They're still feeling lousy and still need and deserve support. Those of us who have been blessed with a successful outcome have the opportunity (not to mention the responsibility) to make up for six months, a year or more of being out of commission.

All best,

Chris

Not much else to say. The kids are great, Spouse is going crazy with her new job (office manager in junior high school). Eldest is away at school being a dormitory Resident Assistant (kind of a designated adult/babysitter) and Orientation Leader (sell the school to prospective students). It's paying for this semester. She has gotten very serious with a young man we've known for a while. And they're up there with no curfew! Difficult for a dad to get his head around.

Middle (aka Son) is a senior in high school. He is the student body president (as was Eldest) and is playing football. We're having the doors widened so he can get his head through them.

Youngest has also decided to follow the example of the older two and entered school politics as freshman class president. I showed her the "Destiny" clip from Young Frankenstein. Spouse and I wonder at the wisdom of her taking on student government. She's the smart one of the bunch and is in lots of advanced placement classes. "Stugo" takes a lot of time out. On the other hand it's fun and keeps her from burrowing too deeply into the books.

On the whole we've got things down to boring. I'll take boring. Guess that's the definition of middle-age: you learn to appreciate boring.

Physical Time

Went in for my annual a couple of weeks ago. Blood pressure and such were all normal; cholesterol was a tad high, which is new to me. Going to work on that. I've been eating like my teenage son and have not been exercising as much as I should. The really good news is that the liver panel was normal. I have an appointment with the gastro doc this month and will be getting another PCR (virus count -- see previous post).


I spent last week in Colorado in business meetings and classes. I work for a big technology company you've definitely heard of. The team of guys who do what I do are scattered across the country and we all work on separate projects. We rarely get together, but had an opportunity to have an intact team class. I recounted the last time we got together in a previous post. That was a rough one. I had not seen most of these guys face-to-face, including my boss, in nearly two years. Several comments from the guys. They knew I was going through something and that I was pretty weak last time, but I didn't advertise what I was dealing with. They knew I was kind of a mess from the way I got lost, and from my appearance. What a difference this time. I ran 2+ miles on three of the five days I was there. Much better! I think the PCR test later this month will bear out how good I feel. Sure hope so, anyway.

Long overdue check-in

I recently got a note from a member of one of the Hep C forums asking me to check in. As I had pointed out in the past, those of us fortunate enough to see SVR often disappear. Consequently, treatment veterans on the boards tend to be those who have relapsed. That skewing of the sample can be discouraging to those who are going through treatment. So, I paid a visit. I had nearly forgotten the vocabulary list below. I wrote it while on treatment and they posted it at the top of the board.

There's been some kind of rift within the two major UK-based Hep C boards. Not having a dog in that hunt, and having friends in both places, I herewith ignore it.

Anyway, here's the list:

Hep C Vocabulary

acetaminophen -- North American generic name for paracetamol. British and other European countries trade name Panadol.

AD -- Anti-depressants. Depression can be a significant side-effect of treatment. Hepatitis C patients often take anti-depressants to counteract the side effects.

ALT -- Alanine aminotransferase. One of the markers for liver inflammation. Typical (non-HEP C) values: Men--10 to 32 IU/L, Women--9 to 24 IU/L. The normal range is 5-40 IU/L, although the numbers can vary.

AST -- Aspartate aminotransferase. One of the markers for liver inflammation. Typical (non-HEP C) value 8 to 20 IU/L, although the numbers can vary.

bx -- Biopsy. Broadly, a diagnostic tissue sample. In this forum it almost alway means a needle biopsy of the liver. A thin needle is inserted into the liver and a small piece examined microscopically. From the biopsy a determination is made of the extent of liver damage. Results of the biopsy are expressed as the HAI score (see HAI score below.

dx -- Diagnosis. In the context of this forum, it specifically means the Hep C diagnosis. Diagnosis is not necessarily the same thing as being positive for antibodies. A certain percentage of people clear the virus and so their diagnosis is negative, even though they have and will continue to have the antibodies.

EVR -- Enhanced Viral Response. A treatment milestone, usually meaning that virus levels have dropped to a point where there is a good chance of a cure.

genotype or type -- Strain of the hepatitis C virus. Several strains or genotypes have been identified. The identification is a number, sometimes followed by a letter. The difference between the letter subtypes is generally academic. There is no difference to a patient whether he or she has type 1a or 1b, it's still a 48-week ride. Genotype 2 and 3 are usually treated for 24 weeks, although some doctors go longer given medical history. Genotype 4 is rare outside the Mideast, although it is widespread in Egypt. It is treated for 48 weeks like Type 1. There are rumblings of more Genotypes out there, but for the patient, the details of the differences are probably academic. It's the same program -- so far.

HAI Score -- Histology Activity Index. A standard system of grading the level of inflammation and scarring in the liver based on a biopsy sample. The HAI score is expressed as two numbers between zero and four. One is given for the level of inflammation, the other for the level of scarring.

HCV -- Hepatitis C Virus. A blood-borne viral pathogen that causes Hepatitis C. Probably the reason you're reading this.

HGB -- Haemoglobin/Hemoglobin. The red part of red blood cells. Part of the Complete Blood Count numbers. Ribavirin tends to depress hemoglobin counts which results in anaemia/anemia.

Howdjuhgiddit? -- "How did you get it?" A rude question. Sometimes asked innocently by well-meaning people, sometimes asked by the morbidly curious who want to know whether you're a closet junkie. How you answer can depend on your mood, your threshold of rudeness, and your willingness to share your medical history.

hx -- History. This is medical chart abbreviation that occasionally makes it into the forum. It is also what people are asking for when they ask Howdjuhgiddit?

ifx or ifn -- Interferon. There are two major brands. Pegasys, manufactured by Roche, and Peg-Intron, manufactured by Schering. Both products are about equally effective, although anecdotal evidence indicates that where one is not effective, the other might work better.

LFT -- Liver Function Test. A blood test that measures various liver-related enzymes in the blood. Also sometimes called a Liver Panel.

neutrophil or "neuts" -- A type of white blood cell. Neutrophils are critical for fighting bacterial infections such as staph or strep. Interferon tends to depress production of neutrophils.

paracetamol -- British generic name for acetaminophen, North American trade name Tylenol.

PCR -- Polymerase Chain Reaction. A test for presence of the hepatitis C virus. There are two types of tests. The "qualititatve" test is a yes/no determination of whether the virus is present or not. The "quantitative" test estimates virus particles per milliliter of blood.

RBC -- Red Blood Count. A measure of red blood cells or haemoglobin/hemoglobin. Normal values are Male: 13-17 (g/dl) Female: 12-16 (g/dl). Values below 10 are cause for concern.

riba -- Ribavirin. An anti-viral drug that has been found to enhance the effectiveness of interferon in fighting the hepatitis C virus.

RVR -- Rapid Viral Response. An inordinately early negative result to a four-week PCR. When the virus is undetectable at four weeks, some doctors call that patient a "super-responder." It might make the patient a candidate for shortened treatment, but RVR status is only one of many factors to be considered. At the very least, it's good news.

Rx -- (Chiefly American) Medical shorthand for Prescription

score-- See HAI Score

SVR -- Sustained Virological Response. The goal of treatment. A medical hedge word used when they don't want to say "cured." A negative PCR six months after treatment is considered an SVR in the UK and US.

sx or sides -- Side Effects. Side effects from treatment can range from none to mild to debilitating. Effects can be mental such as "brain fog," or difficulty concentrating, emotional, such as depression, irritability, physical such as fatigue, headache, "flu" symptoms, or clinically measured such as low white blood cell counts. No one can predict when, if, or how long side effects will appear.

sux -- What sides do.

type -- See genotype.

TV or telly-- Television. Something you will be watching a lot of while you are on tx. Other terms and acronyms you may become familiar with during this period are DVD, VHS, CBS, ABC, NBC, HBO, CBC, BBC, and Tivo.

TX -- Texas. Postal abbreviation for the State of Texas. Not to be confused with tx (lowercase) which see below.

tx -- Treatment. Specifically the 24 or 48-week combination therapy usually consisting of once-weekly subcutaneous interferon shots and twice-daily ribavirin tablets.

undetectable -- The positively great news that the PCR test is negative. The virus, if it is present at all, is in such low concentrations that the test can't find it.

VL -- Viral Load. The presence of the virus in the blood, usually expressed in number of particles per milliliter of blood. Determined via a quantitative PCR.

WBC -- White blood count. A measure of white blood cells in the bloodstream. Interferon can depress white blood cells. Normal range is usually expressed as a number between 4 - 11, but the decimal point can move with your location.