Still Undetectable!

I never had a 12-month post treatment PCR, but I finally had one about a week ago, which makes that 18 months post-treatment - and I'm still UD!
It looks like the bug is dead.

I Don't Wonder or Wander Anymore

This is the first post I put on here in months, so you know this is important.

If you're looking for advice, support, knowledge, friends, etc. regarding Hep C, click on the link marked 'The Nomads' to the right of this post. This is where I park my camel, most nights, since this site opened in early December, 2007, and I became Member #13. Before that, I did wander from place to place and I wondered about some of the people at those sites.

If you've been a member of the "Hep C" online scene for a while, you'll find some old friends and everyone is very friendly. If you're newly diagnosed with Hep C and considering your options, you'll find plenty of people who have been down the same road you're on, who will point you in the right direction.

Most of the Nomads have belonged to other Hep C online forums and have left those other sites, for one reason or another. But, a fair number of Nomads still belong to other forums and this isn't questioned.

This is an unmoderated forum. There hasn't been a need for moderators so far. If you join and post something, your post isn't 'submitted for approval,' it gets posted online immediately. When one member had a little Riba rage incident, everyone else just ignored it, and that is the best way to handle these things.

I hope to see you there - I've got a lovely tent on the edge of the oasis.

The End

So, that's about it here. This blog was set up to document my uncertain journey...blah, blah, blah. On the way it provided an outlet for my outrage against the medical industrial complex here in the USA, the rigors of HCV treatment, and especially against one particular G.I. practice and one Physician's Ass. I had thought I'd name the practice, & name the Ass, once I was done, but I am considering reporting it and him to the authorities in my state, and don't want to deal with accusations of libel, if I do that. If anyone in the mid-Atlantic region is considering HCV treatment and wants to know the name of a good doctor - to avoid - send me an email, and I'll tell you who not to use. Just last night at the beautician's, I warned a stylist, who is having a colonoscopy Monday with my doctor, about them.

The Ass, being an Ass, gave me orders to have another ultra-sound, but I'm not doing that, especially after talking to an ultra-sound technician last week, who told me that the procedure is worthless.

I won't be having another PCR for a year, not until my next check-up with my primary care physician. The Ass told me that he recently saw another Type 2 HCV patient, whose virus came back, two years after the patient was declared SVR, so I know anything can happen.

If you're a recently diagnosed HCV patient, or just anyone who wants information on my experiences with HCV and its treatment that you haven't found here - and I don't know what else I could say, I didn't exactly hold back anything here - send an email to the address at the right.

I'll be continuing the other blog and renaming it, but haven't thought of a good name yet. I'm either no longer depressed about the events in my life - or the bubble hasn't burst yet and I may still slip into depression. I think I'm adjusting to my new and lonelier life (possible deprssing title I've already ruled out). Since making the decision that my current/ex husband HAD to get some kind of therapy if he wanted to get back together with me, and him refusing to do that and now actively pursing Plan RV, I've felt at peace.

I may even no longer be uncertain...

Nah, probably not.

The Best News!!!

I had to tell two of my blog buddies in person today, couldn't post anything till I did. I'm Virus free as of Sept. 29th!!!

No physician's ass's were killed in the aforementioned viral massacre, although I'm sure that if one particular physician's ass had been killed, it would have been ruled a justifiable homicide.

One new blog image/avatar was lost in the excitement of writing this, leaving me with the old one; obviously I killed as many of my own brain cells during the HCV treatment as I did HCV viral copies. But, I'll get it worked out. A new image is on the way.

Thanks to Tea and Laurie for spending a wonderful day in New York City with me - and b.t.w. - Tea has the most amazing eyelashes I've ever seen, makes me want to do treatment again...NOT!!

Well, it's late, the basic points are: I killed the virus, I lost my new blog image and oh yeah, did I mention that the virus is gone? Well, the virus is gone!!

A Year Ago

A year ago today, I started my HCV treatment. At this time, precisely, a year ago I was probably at work, dreading an afternoon appointment with my physician's ass, who was going to give me my first injection. I seem to remember he kept me waiting so long, that I withdrew the proposal I had made him a few weeks before - to give me all of my injections, and I would slip him $25 each, in cash, for his services. I think he kept me waiting for almost an hour and I valued my time at more than that.

So, I learned how to do a sub-cutaneous injection, which proved helpful when my daughter, (who has something called "Liden-5" factor (I think), which causes blood clots in women with it who take birth control pills, and could cause clots in the umbillacal cords of their babies, when they get pregnant, which can cause miscarriages) became pregnant and required daily injections of blood thinners.

And, I've learned a few things about HCV treatment in the past year, which are my conclusions only, based on my observations of reading about hundreds of people's experiences:

1. People with high viral loads should start taking ribariran 4 weeks before their first interferon injection, so the riba can build up in their systems and be at full strength when the interferon begins.

2. Everyone should have a 4-week PCR, that's a full 28 days after their first interferon injection, but before they give themselves injection #5. If they're undetectable at the 4-week point, they're Super Responders, if not they should have a PCR at the end of 8 weeks, to see if they're early responders, if not the usual one at 12 weeks. Knowing that you're undetectable at 4 weeks would give you a sense of well being, knowing that you killed the virus in just 4 weeks, and would make any proposed dose reductions later on in treatment easier to accept.

3. Rescue drugs, such as Procrit and Neupogen should be given to everyone on HCV treatment who needs them, to increase their chances of completing treatment. It is incredibly cheap and short-sighted of insurance companies to deny these drugs to their members, they're saving some money in the short run, but if the patient is taken off treatment, due to anemia or neutropenia, and then goes on to require a liver transplant, this operation will cost the insurance company hundreds of thousands of dollars more than would the rescue drugs.

4. Anyone doing HCV treatment for more than 24 weeks should not fight anti-depressants, if it becomes obvious that they are required. Taking these is not a weakness, it's another type of rescue drugs. You can (or I could) tough it out for 24 weeks, at great risk of having road rage incidents, arguments with everyone, and delusions of psychic powers (which I knew were delusions while I was having them, but nonetheless, on some level, I believed I could read peoples' minds), but 'toughing it out' does not make you a better person, it makes treatment more miserable for you and those around you.

5. If your HCV doctor or physician's assistant does not ask questions about your mental health at each appointment, find another doctor who does do this and switch doctors.

Anyway, these are my thoughts, no one elses. I still have a week before I see my physician's ass for what I hope is the last time on Oct. 19th, and rip him a new one over #5 above, but I have found out, from my primary care physician, that my other blood work is good, my Hgb is back in the 13 range, Hct is similarly good - I didn't ask him about the AST and ALT tests, gotta leave some surprises for next week - even my cholesterol is good (170) and my TSH is .36, which is where I like it.

I'm the biggest baby there ever was regarding needle-phobia, hatred of side effects, and being sick. If I could complete this treatment for 24 weeks (albeit with rescue drugs), anyone can.

Anyone doing this for 48 weeks has my total admiration and anyone doing it for longer than that, or multiple times...well, words fail me. These people are true role models for HCV treatment and Super Heroes.

Hi Ho...

...Hi ho,

It's off to have my blood drawn for the 6-month post treatment PCR I go.

If my Physician's Ass got the code wrong on the lab slip and my family doctor refuses to change it and I end up having the wrong test - that shows I have the the HCV antibody - and this is the only news my Physician's Ass can give me on October 19th,

Then it's out of a fourth floor window he goes.

(My apologies to the 7 Dwarfs)

It’s probably back

The virus, that is, and I don’t care. I’m too old to try to get rid of it a second time, I’ll just live with it as best I can.

I’ve been very good about not eating the foods that used to go straight through me before I started treatment, except for some Sushi, now and then; nonetheless, random foods (I kept a food diary for a week to see if I could detect a pattern – no pattern was seen) are back to going right through me again, and I’m back to buying Imodium in bulk and taking it more often than I should be.

If it's back, I’m sorry I’m not going to be able to drink the occasional beer or glass of wine again, the four remaining bottles of beer from the six-pack I bought in July will need to stop calling my name and call someone else’s name instead.

I probably never should have tried to get rid of the virus, at my age and with my minimal liver damage, it probably wasn’t worth doing. My G.I. doctor and his Ass should have realized that: 1) I already had one auto-immune disease; 2) interferon can cause people to develop auto-immune diseases, especially since if they already have one, they are automatically predisposed to get another one, and discussed this with me. They did not. If they had, I probably wouldn’t have done the HCV treatment. I probably should have read the Pegasys brochure more carefully and not relied on a doctor to know what was best for me. Bygones.

The two auto-immune diseases that scare me the most are Rheumatoid Arthritis and Pernicious Anemia.

My grandmother had R.A., my daughter has it, and there is a strong family connection. When my grandmother had it, there was little she could take for it, and she became wheelchair bound and lived her final years in constant pain. When my daughter was diagnosed with it, at the age of 22, there were lots of new medicines for it, and two of them stopped the disease’s progression in its tracks, at least for now.

Since I’m not expecting to be virus free next Friday, I’m just hoping to NOT test positive for the Rheumatoid Arthritis factor, despite stiff achy joints, a constant since about day five of treatment, especially in my hands, that lack the ability to turn a door knob or open a jar of spaghetti sauce. Or if I do have R.A., I hope I can control it with aspirin or ibuprofen, as I obviously can’t take any of the modern ‘may cause liver damage’ drugs that my daughter took for it.

I’m just hoping to NOT test positive for Pernicious Anemia next week, despite zero energy and stamina, almost constant since about day five of HCV treatment. The treatment for that is more B-12, possibly in the form of injections, probably self-administered. I’m really not up for that. My mother got her B-12 shots from the doctor; doctors probably don’t do that now.

So, if it’s back, it’s back, there’s nothing I’m going to do about it. I may even drink those four bottles of beer.