kearns' personal medical AIDS update: my new g-tube, fat HIVers, occult wasting & stigma

chers—

i write this post to you with my newly-placed g-tube sticking out of my abdomen from a big patch of bleach-white gauze and paper tape, a feeding device to provide me with enough supplemental calories to gain 20 pounds and stabilize there by the end of the year. i’m sore — my doctor threaded it through me endoscopically (puncturing me from the inside out). my favorite kind of operation: the anaesthesiologist added gunk to my iv, and the next thing i knew, the procedure was finished. i went home

back at the end of may (my birthday) i had some kind of bug (aside from HIV) and my weight dropped to 135. there was just not enough of me to go around (and it’s not the first time i’ve been at this weight, though it’s my first time with a food tube).

i set a goal of gaining ten pounds by the end of the summer. started out fine — my weight was up to 143 mid-july. then i pushed too hard & got another bug, & dropped back down again.

i kept expecting to gain weight on 1,000 calories/day, thinking that if it were split up into six teeny daily meals, it would somehow alter the caloric arithmetic. my rational mind fell asleep at the switch, i guess (vanity of vanities, saith the preacher). i need to be clearing 3,000 calories/day, from both oral & tube feeding (this despite the AIDS-meds-triggered diabetes). once i get the intake and weight up, the next step is to stabilize at the weight, followed by weaning from the tube. will also have to make contact with a gym, or find some dumbbells for my room come december.

then i saw the report from kaiser network: Two-Thirds of HIV-Positive People in U.S. Overweight, Obese, Study Says.

. . . Some experts said there could be psychological reasons for the weight gain and that some HIV-positive people might be gaining weight to avoid wasting syndrome. In addition, HIV-positive people are living longer and might be prone to poor eating and exercise habits, the AP/Seattle Post-Intelligencer reports.

“We used to worry that [HIV-positive people] would lose weight and become wasted,” Crum-Cianflone said, adding, “Maybe we should redirect our concerns to making sure they are maintaining a healthy, normal weight.” John Brooks — an epidemiologist in HIV/AIDS prevention at CDC who did not participate in the study — said, “It’s very clear now that HIV is no longer a wasting disease in America” (Chang, AP/Post-Intelligencer , 10/4).

for about thirty seconds, i felt like old dobbin witnessing the advent of the horseless carriage. then i spotted the underpinnings of stigma shaping the article: a cure for AIDS takes a back seat to undetectability.

“some HIV-positive people might be gaining weight to avoid wasting syndrome,” says the report. what dobbin-pucky. they’re avoiding looking like they have AIDS.

in the rest of the world, AIDS is a wasting disease. oh yeah. all those guys — the unamericans, the ones who don’t matter, the skin-and-bones refugee set, dying now worldwide.

contrary to the cdc’s john brooks’ wishful sentiments, in fat america, AIDS is still a wasting disease. why?

quick background: i taught aerobics and was an ACE-certified personal trainer for 20 years — two of my many AIDS-driven expertises. i developed exercise programs specific to the needs of HIVers in several la-area gyms. the basic principle of those programs? total body weight is not a predictor of survivability with AIDS. lean weight is. the fat component of your body weight doesn’t matter, although its increase relative to lean weight can signal an overall deterioration in wellness.

from the body:

Scale weight alone is not an adequate indicator of internal health. When someone loses, gains or even maintains weight, the composition of that weight needs to be frequently assessed and monitored.

If weight gain has occurred, was it in fat or body cell [“lean”] mass? If weight loss has taken place, was it in fat or body cell mass? And if weight has remained stable, has the makeup of that weight changed internally?

HIVers go through a process called occult wasting, defined as a “significant depletion of lean body mass without significant weight loss.” basically, as the disease progresses, you lose muscle and you gain fat, even though it doesn’t show. you can determine your lean and fat cell masses at your doctor’s office with a bioelectrical impedance analysis (HIVers should monitor BIA once a year, or more often when your weight is changing).

but inside each one of those overweight & obese & seemingly happy press-culture HIVers is a skinny PWA like me, a time bomb ticking away.

who’s kidding whom? it’s our national obsession: looks vs. substance. ideology vs. science. fancy vs. fact. (the preacher saith all is vanity)

in the meantime, tube in place, i’m jumping back into my activism. i will be attending nedra kline weinreich’s social marketing university training monday-wednesday october 15-17, 2007 on ucla campus. i have several projects i want to work on there, and i look forward to seeing what other attendees are doing. i am also organizing poetry readings in la-area medical cannabis clinics december 1-2, 2007 — world aids day weekend. this will be the second year. in addition, i have some print projects underway, and maybe t-shirt poetry.

catch you there.

namasté

—rk