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Saturday, June 28, 2014


Since I planned to ride my bike to work in the first place, I rode it to my first therapy session at the apheresis clinic. I couldn't see any reason not to, I try to maximize my bicycle commuting, usually that's three round-trips per week (though not always round trips on the same day, I leave the car at work and ride home/back in quite a bit. Usually I can work it to where I get at least a 12-1/2 mile ride every day of the week.

When I was 32, I had a heart attack and was told at the time that elevated Lipoprotein(a), and at the time I was prescribed Niaspan, a time-released megadose of niacin that can reduce LP(a) levels a bit. It hasn't been demonstrated to reduce future cardiac events, though, and sure enough eleven years after the heart attack I was primed for another, managed to get on the operating table for a double bypass in time to prevent that. My surgeon referred me to the doc at the Lipids Clinic where, almost a year later (I was warned that it took a while to get in), I learned of a couple of things that might prevent me from clogging back up.

With my familial hypercholesterolaemia and elevated LP(a), it turns out apheresis therapy may be my best shot at becoming eligible for a Senior Citizen discount at restaurants. Heart attack at 32, bypass at 43, this is not a trajectory that inspires confidence that I'll live to draw down my Roth IRA.

I hate needles. I'm not into pain, either, and this involves both. Every two weeks. For the rest of my life? I asked the doc. Five or six years, he said. There's a drug in clinical trial (which I'm also a candidate for) he thinks is five or six years from market that will make apheresis obsolete for treating my condition. If I go into the trial for that drug, I have a fifty-fifty shot I'm getting the drug, so since my insurance will pay for the painful needle trick, I decided that was my best option for now.

I was told the therapy takes two to four hours, so I took a half day off work. KU Med is on a hill, and I chose my route poorly I think. I went through the West Bottoms to avoid crossing I-35 on 7th Street. I've done that crossing in evening rush hour, and it's no fun at all. Too many lanes, too many people coming on and off the highway not understanding what a bike is doing in a lane they plan to sweep across. Morning rush hour, add to that the drivers are half asleep, steering with their hips as the juggle coffee and phone. The West Bottoms is out of the way, but I came out on Southwest Boulevard pretty easily and then planned to climb Roanoke. Which would have been an okay choice, maybe even the best, but there's a fork in the road as you start to climb it, and I could see that Wyoming angled more in the direction of the hospital and since I was cutting it close on time, I decided that direct counted.

Wyoming turned out to be one of the steepest hills I've ever climbed, and right when it looks like you're reaching the top, there's a corner and a bit more that's even steeper. Yikes.

So anyway, a very pretty nurse with a good bedside manner was soon running needles in my arms and starting the process of filtering out the junk in my blood. Well, not that soon, there was the initial paperwork and other first-time formalities so after arriving at 8:00, I think it was a little past 9:00 when the bloodletting began.

I had figured while I sat there for two hours, I could probably fidget with my phone. A reliable balm when I'm anxious and doing medical shit, but it turns out they want you to sit still with needles in both arms. Maybe she explained to me that I had to not bend or move the arms and I missed it, I don't know, but after a slow start (apparently first treatments take longer) my face itched and without thinking I reached up and scratched it. This got a rise out of the nurse, who told me if my face itched I needed to tell her and she'd rub it with gauze or something.

I learned the reason for the rise I got out of her when the machine started beeping and my right elbow started to get a little lump in it. I had 'infiltrated' I was told, meaning basically that the needed had gouged through the vein wall and wasn't returning my red blood cells to the blood stream but was rather creating a bit of a hematoma. I mentioned I'm not great with needles, right, I about fainted in the chair just realizing what had happened.

They tried to get it started again with a needle in my right hand. Then in my left. Then the doc came through and pronounced the situation hopeless since I'd been there four three hours and had only filtered 400 ml of the planned 3 liters, but the nurses thought they could salvage the situation and since I didn't want all this discomfort and disgustingness to be for nothing, I stayed put. They eventually got the original site going again, the swelling had gone down and apparently I clot well.

Having to sit perfectly still makes me want to bend my arms and fidget all the more, but I settled for sitting totally still and watching a bit of TV. The unit has a little TV included that can be moved around to wherever is easy to view. I had to have the nurse change the channels if I wanted a change, of course, and after growing bored with the History Channel I decided to try Food Network. Which was a mistake.

I'd been there half the day and I was getting hungry. It only took an hour and a half of Bobby Flay torturing me with his barbecue addiction for me to realize how miserable the food porn was making me and ask for the TV to be turned back off.

Finally, my three liters of blood was filtered, my plasma was rinsed back into me and I was free to go. I'd missed the whole day at work, basically, I had a caffeine withdrawal headache and I was starving—having only had a dry granola bar fed to me by the nurse and a few sips of Gatorade. I was told to maybe not ride my bike to therapy, that working out before the session makes your blood flow slower, too (counterintuitive, I think, but I can put my bike on a bus next time and not sacrifice that many riding miles).

And I'd produced a filter full of yellow gick. I asked, "Is this the stuff that gives food its flavor?" I teased that I should go get a big fat slice of pepperoni from d'Bronx to replenish my bodily fluids, though while LDL is part of what gets filtered out, the LP(a) is the real reason for the therapy—it doesn't really respond to diet or available drugs or else Humana wouldn't be paying to give me these exotic oil changes.

I think the filter unit is about a quart in volume, but the filter medium takes up space so no way did a quart of fatty crud get removed from my blood. Quite a bit, though. I asked if I could take it home with me and make soap, Fight Club style, and I think they thought I was kidding.

1 comment:

swampwiz said...

I have just read about that new Rx that will spare you from this vampiric treatment and wanted to see what the LDL gunk looked like. I had known about your condition, familial hypercholesterolemia, for a while but did not know how this was treated. I am curious as to whether you are heterozygous or homozygous (I would think that since you had made it to 43 before getting a coronary, that you have the less acute heterozygous form.) I hope you get this new Rx with all deliberate speed, and thank goodness that folks like us (I got cancer at age 31) who had been considered as "uninsurable" by insurers can now get insurance.