Entry 02: Haven't started treatment yet...

posted 2000-Apr-6
— updated 2000-Apr-10

2000-Apr-6 : Because I know so few people here in St. Louis, and because Lisa (my fiancée) will be quite busy with architecture interning over the summer, Lisa and I have decided to move back to my hometown of Bryn Athyn for the summer so that I could be around my family during these first few months of the treatment. We'll be driving back mid-May with the cats (we have a friend who's willing to live in our house for the summer to watch over it) and returning when school starts again at the end of August.

My doctor and I have not yet worked out the details of how this will affect my treatment, whether I will report remotely to him over the summer or whether I will temporarily revert to my previous doctor. Because of this we haven't yet finalized when I'm going to start the treatment.

I had hoped to wait to start the treatment until after the current remodelling projects were done, but that was back when I thought they'd be done by now (it's now looking like it will be more than 2 weeks before it's all done). My current plan is to start treatment on the 16th of April. Why then?

Yesterday Lisa and I attended a class on the treatment, designed to teach people with Hepatitis B & C:

I've now got loads of good information (particularly surrounding the side-effects, and how important it is that I drink 90 ounces of liquid a day). For those of you unfamiliar with the treatment, I get to stick myself in the thigh, stomach, or upper-arm 3 times a week for a year, and take 6 pills a day of ribavirin (this will be in addition to the Milk Thistle and Ginkgo-Biloba tablets). They say the first 3-4 weeks of treatment are when you experience the worst of the flu-like symptoms (though thankfully there should be little vomiting involved). I'd like to get this over with before I pack up, drive across the country, move in, and participate in my sister's wedding.

After the initial flu-like side-effects, other possible side effects throughout the treatment are:

ProbablePossibleRare
Fever/chills (1st month), Fatigue, Poor Memory, Difficulty with Concentration, Irritability, Depression, Insomnia, Mild Hair Loss (re-grows after treatment stops), Shortness of Breath (mild anemia caused by ribavirin--ends with treatment), Loss of Appetite Headache, Muscle , Dry/Itchy Skin and Rashes Nausea, Vomiting, Diarrhea, Chest Pain, Mouth soreness

The most important thing I've gathered from the class and its supplemental information is that I'm tired of dreading the possibility of these symtpoms and the chance of success. A friend of mine in Med. School made a great point. She said "a 30% chance of success doesn't mean that you're going to get 30% better...either you're going to or not."

I'm determined to succeed. I'm not yet determined to not have any of the symptoms, but I am determined to get determined :) I'm really excited to beat this disease. (Though they say that you can't ever really get rid of it, eradicating all measurable traces of the virus and having it stay gone 10 years later sounds good to me.)

To fight the depression from the treatment, they strongly suggest that I keep (or rather, start) exercising regularly, and that I continue to work. So after the flu-symptom first month, once I've moved back to Bryn Athyn, I'm excited to work for my company back in the main office.

I'm planning on giving myself the injections on Sunday, Tuesday, and Thursday nights (they suggest you do it at night so you can sleep through the worst of the effects) so that my worst days are Monday, Wednesday, and Friday, leaving the weekend as a nice succession of days feeling good.

The prescriptions are given for a pair of 2-week doses, so I should be able to go to the big 2-week clan reunion in Scotland...though I haven't confirmed this with my doctor. As an aside--holy crap is the treatment expensive! Hopefully insurance will cover most of it, but each 2-week dosage costs $740. Multiply that by 26 2-week periods per year and there's a whopping raw cost of $19,240, and that doesn't even include the lab tests and doctor's visits!

Anyhow, this is becoming too long. I'll post an update when my doctor calls me back and I know more details of when I'm beginning. Get psyched for me to beat this thing!

- Gavin

Dain Kistner
07:59AM ET
2000-Apr-07
Great attitude! I know you're gonna be ok - and I'll be pulling for you every step of the way.
(btw...are you starting May 16? Or did you mean April...
Gavin Kistner
12:32PM ET
2000-Apr-07
Whoops! I meant April. Content has been changed to reflect this.
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