Thursday, April 17, 2008

On the bubble

Today's the 11th day of my Interstim test drive; on Monday, I either get a permanent implant or I get the wires removed. I'm still not sure which way it will go. The very helpful gent from Medtronic has taken me through maybe ten different configurations, but to my mind, there hasn't been a 50% improvement in my symptoms.

I've gone over my pee-pee journal to count how many times I was going in a day before as opposed to after, thought about changes in urgency and frequency, and with this last configuration I started yesterday, I reckon I'm maybe 40% better. I couldn't explain exactly how I come up with that figure, especially since I really can't remember what it was like to have a well-trained bladder. When I was 18, how often did I pee? Except I didn't drink either coffee (my favorite brown hot beverage) or beer (my favorite cold brown beverage) then. What, exactly, is better? For one thing, when I went in to get my staples removed yesterday, my post-void residual (the amount of pee left in my bladder after peeing as much as I could pee, as measured by ultrasound) was about 175 ccs-- about the same as it was before I got the device.

I talked to the Medtronic guy tonite, and he said that we've really tried out all the settings we could achieve with the temporary external gizmo, that the permanent gizmo could be configured in more ways, but suggested that I stay with the current setting until tomorrow evening, and then just disconnect the thing, to refresh my recollection of where I started. That makes sense to me. As much as I am attracted to the sheer niftyness of having a super-special gizmo implanted in my butt, I really only want it if it's going to work.

On the other hand, my pee-pee diary shows that I last went at 4:20, and it's now almost four hours and two beers later. Hmm.

On the other

Monday, April 14, 2008

In the news: big copays for MS drugs

Today's NYT reports on the increasing prevalence of big, fat copays for expensive drugs like Copaxone, Avonex, and Betaseron. Snip:
The system, often called Tier 4, began in earnest with Medicare drug plans and spread rapidly. It is now incorporated into 86 percent of those plans. Some have even higher co-payments for certain drugs, a Tier 5.
Now Tier 4 is also showing up in insurance that people buy on their own or acquire through employers, said Dan Mendelson of Avalere Health, a research organization in Washington. It is the fastest-growing segment in private insurance, Mr. Mendelson said. Five years ago it was virtually nonexistent in private plans, he said. Now 10 percent of them have Tier 4 drug categories.

By way of an example, a woman insured by Kaiser Permanente who had been paying $20 per month for Copaxone, was asked to pay $325. Kaiser's suspended the increased copay for now, but next year she'll need to change plans or pay up. Raising copays for a few sick people means many healthier people will pay less (duh), but, as a practical matter, also means the health insurance safety net is getting smaller.

Between Rebif and the various other drugs I take for the symptoms of MS, I pay about $120 a month in copays. That's pretty easy to manage-- it's money we might otherwise use to go out to dinner or to save for a vacation, but it's not a big sacrifice. But if that went up to $500 per month, we'd be in some trouble. My wife probably wouldn't be able to go back to school for a nursing degree. We probably wouldn't be saving as much for retirement. If it went up to $1,000 per month, we'd be in serious trouble. I'd start thinking about which meds I could live without. We'd probably think about selling the house and moving somewhere substantially cheaper.

On one hand, this makes me nuts: the only way I can afford the care I need is if healthy people subsidize it, and it seems perfectly rational for you healthy people to want not to subsidize my care. On the other hand, I'm reasonably confident that I'd probably be just fine, because the quality of my life and everybody else's doesn't have much to do with how much money or stuff we have, as long as we can take care of the basics. Which, of course, is exactly what a sick person is supposed to say, because it's one of the best arguments I can think of to explain why Joe Healthypants down the hall should pay in insurance premiums twice what he actually uses in services, instead of buying himself a new snowblower.

Link to NYT.

Wednesday, April 09, 2008


That's me resplendent in red sweat pants and tighty-whities, sporting my Interstim test unit. Aside from whatever benefit I get (or don't) from the device, I feel like my post-op convalescence is giving me an advance peek of what it might be like if my MS progresses in a significant way.

I'm needing significant help getting dressed and undressed, and I'm not able to provide much help taking the dogs out or making dinner. And because I just happen to have some work that's well-suited to doing at home, I'm home alone except for the dogs. I was a little weird to say goodbye to Carmen this morning as she headed off to school for the day, not intending to be back until 6 tonite. If for only a few days, I'm getting a taste of being a needy, grateful, self-conscious care-givee.

I'm incredibly lucky to be married to a natural-born caregiver. Even so, I wonder about how long she'd be able to look after me, how long her incredible loyalty would hold up. This less than 48 hours after surgery. Illness must have an incredible power to alter the dynamic of a marriage. It's obvious, I know, but it seems true to me in a new way today.

Tuesday, April 08, 2008

Interstim: further down the rabbit-hole

I'm at work, hiding out in my office. I had the initial surgery yesterday, and today I'm wearing on my belt the garage-door-opener-sized test gizmo. I'm almost over the initial weirdness of being hooked up to the gizmo via a wire that disappears into my lower back, and the dull ache from the incision sites is fading into the background. I've got two of the wires back there, but I'm starting out with only one wire connected, and the box is delivering a very low level zap to the wire coming out of the right side of my back. The sensation from the zap is a rapid, gentle kind of tapping in my crotch. I'll receive my next instructions from the Medtronic rep tomorrow.

I spent a while thinking up a goofy lie to explain the box to any coworker who asks: I'm a product tester for a new kind of iPod, one that connects directly to your nervous system. Actually, the wire connecting my crotch to the test gizmo is iPod white, but the gizmo is decidedly not a sleek, stylish Apple invention. It's brown, with a couple dials on top, some switches and dials hidden under a removeable little door on the side, and little blinking green LED.