DaVita Loca

I am not a political creature. Not even slightly. If someone turns on the news, I find myself flashing back to age eight or nine, when they stopped showing Saturday morning cartoons, and experience all over again my feelings of dismay as I wonder where the hell Muppet Babies went.

I posted about this on my Facebook page last week. It’s taken me this long to get around to blogging on the subject because, really, I’d still rather be watching the exploits of Kermit, Miss Piggy and Gonzo.

I’m certain that what I’m about to say here is not original. But I felt that our experience was worth adding to the general discussion on medical marijuana.

While I am not political, it’s just not in my nature to let things go.

I had joined a support forum for dialysis caregivers through DaVita, a “leading provider of kidney care in the United States, delivering dialysis services and education to patients with chronic kidney failure and end stage renal disease.” When Patrick was first diagnosed with his disease, we referred to their website a lot for diet tips and other information. Recently, I have started frequenting their forums to connect with other caregivers.

As I mentioned in previous posts, we have been wrestling for over a year now with Patrick’s stomach issues. On the DaVita forums, it is probably the single most common complaint. Patrick and I have found out recently that for patients who do peritoneal dialysis, a slow-down in the digestive process is also common.

Last March, when he first started experiencing nausea, it coincided with several other stressful events. In one three-week span of time, we went through a string of emergency room visits; then I had my trip to St. Louis for a conference, a black-tie event hosted by my organization, several other major projects, a research paper, finals, financial stresses and I damn-near suffered a nervous collapse. It was at this juncture that I opted to take this year off from school. It was the best decision I could have made at the time.

So as soon as I was out of school, I turned my attention to finding ways to help Patrick’s appetite problems. He was still losing weight, and becoming depressed to boot.

I discovered there is very little literature available for dialysis patients. So I began checking out websites for chemo patients to see what helps them. We tried everything.

By everything, I mean, we tried everything from psychological tricks to herbal remedies. I was ready to take him to a witch doctor if I thought it might help.

From the psychological, I tried solutions like: “make sure your table is as inviting as possible.” Sure. I could do that. So I tried setting the table with flowers, candles, folded napkins-- the works. That, in conjunction with his favorite foods . . . still didn’t make him hungry. In fact, the scent of food made him gag.

With herbal remedies, we tried ginger in all its permutations—teas, candied, fresh, dried. No luck. We tried other types of teas and herbal supplements, including mint and chamomile, among various infusions and even some tinctures. Still no luck.

We tried changing what he ate and the order he ate it in. We tried changing the time of day he ate. Chemo patients are advised to suck on popsicles to soothe the throat and esophagus—Patrick is anemic and prone to chills. So that made him cold and nauseous.

Some of the other kidney patients at the dialysis clinic recommended marijuana. I was desperate enough to try it. But I did some research and . . . we’re in a drought right now due to the drug cartels fighting in Mexico. The cost, when you can get it, is $30 for a quarter of an ounce, for schwag, which might last a week if you stretch it. So we’d be looking at $120 a month, minimum. Yowza. That would be in addition to the hundreds of dollars a month we spend on prescriptions already-- Medicare does not cover our prescriptions. My insurance covers most of them, but you know what copays are like. On average, we spend about $260 a month for medications.

So we talked to our doctors about it. You may be surprised to know that most of them were all in favor of the idea, and if it were legal in Missouri, they would write a prescription for it immediately. In fact, one of our doctors petitioned our insurance company to try to get Patrick approved for Marinol, but the insurance company wouldn’t shell out for the stuff. They’re perfectly willing to pay for all the narcotics we want, but not synthetic marijuana because . . . well, I guess because it’s got a sordid reputation. Not at all like that morphine, codeine, valium, Hydrocodone, or any of that other hillbilly heroin that not only are doctors only too willing to prescribe to people like Patrick, and pharmacies are willing to fill, and the insurance companies are willing to pay for without blinking . . . things that are highly addictive . . . or, if one were feeling entrepreneurial, would fetch a nice price in the drug trade . . .

But marijuana? Marijuana is BAD!

I'm paraphrasing here, but from what I understand, that's the sum total of the argument. Gateway drug, blah-blah, funds terrorism, blah.

So we went through a variety of medications for nausea and appetite, including Periactin that caused nightmares and hallucinations, (Patrick awoke screaming at night), and Reglan (which is the one that induced a psychotic episode). But again, all these are okay with the FDA.

I speak not only as a caregiver, but from firsthand experience as well. I’ve had migraines since I was seven years old. I, too, have had doctors all but fling narcotics at me. I, too, have taken Periactin, and other drugs that have been described as, “perception-altering.”

“Oooh,” I said. “You mean psychedelic?”

That earned me a stern look from the doctor. “Perception. Altering,” he corrected.

Oh, well, excuse the hell out of me. It amounted to the same thing—I would never be allowed to join the military or the police force.

In April, the gastroenterologist prescribed liquid erythromycin, of all things – a common antibiotic -- for Patrick’s nausea. He takes a few drops twenty minutes before he eats, and then at bedtime. It helps aid the digestive process and even stimulates his appetite a bit. Not a lot, but a bit. The important thing is Patrick has stopped throwing up so much. Unfortunately, his weight is still down. In fact, he is down twelve pounds since April.

We saw the gastroenterologist today for our follow-up appointment. The doc has upped the dosage on the erythromycin, so hopefully now Patrick will also start having a better appetite.

But you know what would just be easier? If he could just toke and get the munchies. Would that be so horrible?

No. Because you know what is horrible? Watching a loved one vomit over and over again. Holding the trashcan for them because they can’t make it to the bathroom because they’re hooked up to the goddamn dialysis machine. Watching the weight come off and wondering if they’re going to be able to eat that day. Feeling their bones start to poke against you when you hug them. Feeling their skin begin to wither to the quality of rice paper. Getting desperate. Knowing that you will do whatever it takes.

If that happens to include smoking a funny-smelling little cigarette, then so be it.

In discussing this on the DaVita forums, I went through this very list of experiences in discussing nausea and vomiting issues with other caregivers. I don’t recall my exact post (because the moderators at DaVita have deleted it), but I advised another poster, something to the effect of:

“See a gastroenterologist to rule out problems unrelated to dialysis and kidney failure. Try herbal remedies and teas. If phosphorus isn’t an issue for you, you might be able to make do with protein shakes to meet daily protein requirements.”

I mentioned problems we’d had with some of the pharmaceuticals, as well as the success we’d had with erythromycin.

Then, I said something like, “I don’t know what city/state/country you’re in, but I’ve heard several dialysis patients say they’ve used marijuana to great effect with this problem. It kills nausea, stimulates appetite, and helps with general anxiety and pain. Good luck.”

It’s not like I told anyone to go out and blaze up. I didn’t tell anyone to grow or sell.

DaVita's slogan is "Giving quality to life."

As I’m writing this, medical marijuana is legal in 16 states and the District of Columbia. It’s pending legislation in 10 more states. So within a year, it could potentially be legal in 26 states, or half the country. But for merely suggesting that someone investigate medical marijuana as a possible solution for relief for their loved one, my post was deleted and I was unceremoniously booted from the DaVita forums-- my account has been disabled (what a disturbingly apropos word). Correct me if I'm wrong, but a forum exists to allow users to exchange information. So how can I do that if I am censored? The information that I posted was not incorrect, indecent or illegal.

A stoner friend of my brother's once said, "You can't OD on pot. You know what the worst thing that'll happen if you smoke too much pot is? You make yourself a peanut butter and Fruit Loop sandwich and go to sleep."

Truer words, my brother. Truer words. I wish for nothing more than for Patrick to crave a peanut butter and Fruit Loop sandwich.

And for now, I'm going to climb down off my rare soap box and go see if I can scrounge up some Muppet Babies episodes on YouTube.