In a sea of glaciers, I'm just a pica

The word pica comes from the Latin word for magpie, a bird known for its large and indiscriminate appetite.
"Pica" in this case: craving and eating something that isn't nutritional -- laundry starch, or clay, or ice. Image: Royal Society for the Protection of Birds, England & Wales


Saying it Jeff Foxworthy style: "If you can list three fast-food restaurants that make "good ice," chances are you have ESRD pica."

It would be about 2 years ago I first fished a shard of ice out of a glass and started sucking on it. Not bad. Pretty soon, I was an ice-cruncher. I'd always deplored the habit in other people, and I'm sure my friends and co-workers hate it. There seems to be no way to stop.

Yes, it sounds crazy. But say you're a chocoholic and every restaurant you go into fills a 3-cup glass half full with Hershey's kisses for you for free. . . actually, that thought makes ME gag. But every cup I walk out with from Arby's or SuperAmerica is more than half-full with ice chips. It's almost become more important than the drink. Or the food.

Studies have found that from a third to two-thirds of dialysis patients -- and I'm certainly getting close to the "dialysis level" of kidney function -- may have ice pica. It seems to be a result of iron deficiency and anemia. Normal people can often kick the habit by taking iron supplements; this route won't work for me.

My "patient's theory": evolution-wise, perhaps people with anemia managed to supplement themselves -- though unwittingly -- by cracking animal bones and eating the marrow.

Whatever the underlying reason, pica's not a good idea for you or your public image. Coupled with my body's inability to absorb enough calcium, it's probably doing a real job on my tooth enamel, as well as chipping away at the patience of anyone near me.

The anemia will be resolved once I get the transplant. So will the calcium problem. And, I hope, I'll also be able to look at ice chips in a cup as an expendable perk and not a sixth food group.

www.academicjournals.org/JPC/PDF/Pdf2009/July/Stillman%2520and%2520Gonzalez.pdf+kidney+pagophagia+transplant&hl=en&gl=us&sig=AFQjCNHehBxFJXc22pFlXxE3x-7KQE4p_A
(Stillman and Gonzalez)

Poang!

Swedish furniture model or sound made by an arrow leaving a bow?

This chair, this used IKEA Poang chair, this slice of birchwood-veneer and cotton-

fabric heaven is the only thing keeping money coming in on my side of the Randy-Holly ledger.

After I found it on craigslist and hauled it up out of a grad student's basement apartment, I set it up at work. Even though I stuck some paper-roll ends under the back of the base to counter the lounging-on-the-Lido angle, people stood and stared. "Where'd you get that?" "Well, you look comfortable!" "Why'd you bring that in?"

For the first several months, before I told them about my kidney failure, I'd reply, "Well, when I get too tired to hold my head up, I can still sit here and go through e-mail or edit stories." They'd laugh, thinking this was some crusty-old-editor joke. "Yeah, right!"

Yeah, right. It was the simple truth. From putting in the occasional 18-hour day, I was to the point where I didn't have the energy to sit up straight. I knew it was time to adjust my work infrastructure after I dreamed one night about a hospital gurney in my cubicle. It just fit behind the desk, and I could raise the head of the bed, lie on my side and mouse on the table tray. I tell ya, the image of being able to work from that hospital bed is still as seductive to me as the dream vision of a Hollywood A-lister is to a normal person.

Because right now, I can fall asleep anywhere. From someone who needed earplugs, darkness, no air movement and PJs to even contemplate the land of Nod, I've turned into that uncle who leans his head back, lets his jaw drop and dozes off after every meal. I can fall asleep on the couch after work or after supper, take a nap at almost any time of day and sleep through any amount of noise, including my own (more on that later). I don't dare drive home to Michigan to see my parents anymore; the last time I did I had to stop midway through the 6-hour journey, pull off the road and close my eyes for an hour.

Social stuff is especially enervating. The energy it takes to keep up my end of the conversation, concentrate on the other person for an hour or so and process what to say next is unbelievably tiring. I'm an introvert anyway, in the "does not garner energy from being in front of a group" definition, so doing interviews is already somewhat taxing. These days, a couple a day are enough to send me to bed early that night. And instead of the random 18-hour workday, I'm now putting in the occasional 18-hour sleepfest.

A couple months ago, I nearly fell asleep in an MRI unit. Never mind that having an MRI is something like lying in a steel coffin while a metal worker pop-rivets the exterior. I was on my back and still, and that's all it takes. I had to fight it off as hard as I do driving, because I go through whole-body muscle spasms as I drift off. As we proceeded from 3-minute to 5-minute to 9-minute imaging sessions, the prospect of having a poltergeist-like blur in the middle of the sequence became more of a threat. Because these aren't little twitches. Think "Cartoon character realizes he lay down on a rattlesnake." I'm truly amazed I don't levitate a foot in the air.

But you know what? It doesn't interfere with falling asleep. After all, not much does these days.

To sleep, perchance to dream

I alluded to troubled sleep in the last post -- well, it's sure troubled.

Thanks to an oversupply of phosphorus -- which binds to calcium in your body thanks to that old proton-electron stuff -- remember your chemistry? I'm suffering from low calcium and the phosphorus is probably leaching calcium from my bones.

As soon as I'm transplanted, this will change, thank heavens. But until then, my muscles twitch and cramp, especially as I'm falling asleep. I do full-body jerks where my torso and legs fly up from the mattress, plus stray limb twitches. Fortunately, they don't keep me up long -- I just fall back on the bed and back to sleep.

I do wonder, though, if the toxins in my body -- including my brain -- are responsible for my other symptoms.

Randy reports nearly every morning on something I've yelled in my sleep -- mostly dreams where someone's trying to break in, the dogs have gotten loose or I'm chasing someone off. "You get the hell out of here!" I'll yell perfectly clearly. Or "Grab her! Stop her!"

Randy says when this first started a couple years ago, the dogs would start up and look at him like "Aren't we going to rescue her?" Now, they just start up, look at him and put their heads back down to sleep.

Fortunately, he can view these announcements with humor -- he currently sleeps across the hall behind a closed door!

'Damned if you do, dead if you don't'

That's how one dialysis patient described the experience.

"Just as a cancer patient deals with chemotherapy and does it to survive, well so do we. Yes, it keeps us alive but this is not what living should be like," said another.

Thanks to my friend Cheryl offering me one of her kidneys, I shouldn't have to go on dialysis unless something happens to torpedo the kidney transplant. I can jump from two failing kidneys to one working one, without floundering in the surf clinging to the fragile lifeline that is dialysis. Anyone acquainted with kidney disease who hears this is overjoyed for me. (A former dialysis nurse simply gave me a wordless but fervent high-five.)

And, this being Minnesota, a place where people don't pry into your innermost thoughts beyond "How 'bout this weather?" I haven't had to answer "So why don't you just go on dialysis?" I have seen the question in anonymous postings on news stories about the scarcity of transplantable organs, as in "Why don't you all just go on dialysis and stop badgering the rest of us for our body parts?"

Well, this is some of what you take on with "just" dialysis:

• restrictions on fluids you can eat and drink, usually a maximum of 4-5 cups per day. This sounds like a lot if you just think, "Oh, a quart of water! I could do that!" But it applies to EVERYTHING that is or could melt into liquid: the broth in soup, the water in ice cubes, the liquid in sherbet or ice cream, any kind of Jello, the contents of watery vegetables. That's why thirst is such a common problem for dialysis patients. I don't know whether "lemon drops and other sour candies" help relieve dry mouth and thirst as nephrologists say they do; I rather doubt it.

• the time element of being on in-clinic hemodialysis three times a week, at 3 to 4 hours a time. Can you find a clinic that offers evening/overnight dialysis so you don't have to take time off work to go? Or are you stuck with the hours healthcare staffers prefer to work? In that case, do you have a job that will let you off for dialysis three days a week? And don't just allow for the hours "on the machine" -- you may also be affected by:

• Fatigue. We soon learned with my father that he wouldn't be mowing the lawn, landscaping or driving long distances on "dialysis days." Instead, he'd spend the morning at the clinic and the afternoon in bed -- and I'm talking about a very energetic, driven, otherwise healthy person in his 50s. Taking all your blood out of your body, filtering out the toxins and squeezing out excess fluid in just a few hours -- instead of having it done gradually all day long by a healthy kidney -- is not a gentle procedure. He'd walk in at 9 a.m. at one weight and blood pressure, and walk back out after 1 p.m. maybe 3-4 pounds lighter (and he was a "good" patient -- those who didn't abide by the fluid restrictions sometimes gained 12) with a significantly lower blood pressure. He had some days where he could recover somewhat by late afternoon, and others where he'd have to lie down to stop the room from spinning.

• Further dietary restrictions, as in "Whoops! Your phosphorus level is way up today. You'll have to cut down on that over the next two days." That would mean cutting out cola, milk and other dairy foods and liver and organ meats. Then, two days later, "Hey! This time it's your potassium!" This list is longer and stranger than I can even provide here, and includes bananas, melons, oranges, milk (again), chicken, cod, salmon, hamburger, wheat (?), carrots, broccoli, spinach. . . My mother nearly went mad trying to grocery shop and prepare meals with these things swinging from one extreme to the other.

• The risks of blood loss and infection -- what with an operation to provide a fistula (a large vessel, usually located in the forearm) that allows hemodialysis needles to access the arterial and venous systems at once. My father found it wasn't an altogether comfortable feeling to know all the blood in his body was being passed through a machine next to him, and that in fact a large amount was in there at any given time. He still recalls the day the blood began clotting. He simultaneously heard the machine alarm and saw the blood in the line going back into his arm stop running and begin clotting all the way back up the tube. A nurse raced from across the room to yank the needle out of his arm before the clotting entered his system.
Because of the clotting risk, he was on blood-thinners and carried constant bruises from doing simple jobs around the house. He also had incredible blood pressure in the fistula, which is right under the skin, and was warned that if anything were to cut it, he would probably bleed out on the spot. A few years after transplant, he had the fistula removed -- going through readjustment in blood-pressure meds for months in order to do so -- but at least doesn't live with that risk anymore.

• The gradual wasting that dialysis causes for most people. Does it accompany the grueling see-saw in blood pressure? Is it a result of fatigue? Does depression come into play? A few people do well on hemodialysis, and actually prefer it to the idea of a transplant. However, some decide on their own to stop undergoing dialysis, knowing full well what awaits them.

Make no mistake: most people who "die waiting for a kidney" are not sitting at home passively dying. They die even though medical staff have been doing everything they can for them 3 times a week for years. They die on dialysis. It's a life-extender, not a life-saver.

Because the above analogy -- to chemotherapy -- seems very apt. If it were possible to remove a tumor, wouldn't you do it, rather than expecting a cancer patient to stay on chemo for as many years as he can hack it?

Dialysis keeps kidney patients alive, but it's not living.

Finding out

My primary physician realized I had high blood pressure in the summer of 1993, though I didn't have a lot of time to worry about it; I was planning a fall wedding in the U.P. I dutifully trotted across the street from the newspaper office to the fire hall to have the chief take my blood pressure once a week but didn't pay much attention to it. (Part of the problem was my lack of connection with numbers. It was only much later, on a "field trip" with fellow newspaper hacks to see "The Paper" that I realized the EMTs yelling out Marisa Tomei's blood pressure as they wheeled her out of her apartment were accurately quoting my typical resting blood pressure. That helped put it into context.)

We had the wedding, the honeymoon and were settling into life as marrieds when my doctor sent me to get an ultrasound to "rule out" PKD. The guy running the machine asked what I was in for, and I blithely told him "Oh, just to make sure I don't have polycystic kidney disease."
This was a really young guy who apparently hadn't inculcated the "I can't tell you anything until the specialist reviews the film" speech, because he replied, "Oh, you've got it, all right. See?"
And he turned the screen toward me so I could see, instead of smooth tissue, a proliferation of cysts, just like those in the last post's PKD photo.

I staggered out to the waiting room while they made sure the images were clear enough, and sat there with tears running down my face. You go along thinking you're a relatively healthy person and in one second, everything changes. I still feel guilty about that morning -- it was obvious all the other women sitting there were there for prenatal ultrasounds, and they probably thought I lost a baby.

This was less than 4 months after Randy and I were married. That really puts the whole "in sickness and in health" part of the wedding ceremony in perspective.

Since then, it's been a long time waiting and watching for things to get worse -- and they do.

A mind is a terrible thing to lose

A mind is a terrible thing to lose

"Cloudy thinking." For a couple years, my nephrologist would ask me if I had that, along with nausea, fluid retention in my feet, other telltale symptoms I was heading into true kidney failure. Numbers tell you percentages, but symptoms tell you how your life's affected and whether you need intervention soon.

"Nope, nope, nope," I'd respond confidently. This held up just fine, until December '08, when my cell phone rang at Rosedale one weekday afternoon. "Hi. Are you coming in to plan out the Christmas music tab?" my boss asked.

Wow. This was a project I'd shepherded through every step -- even located copyright-free Christmas songs in my mother's antique songbook -- and here I was blithely looking at sweaters on deadline day.

Any of you who knew me "in the day," I hope you remember that's not me. The late nights, the overnights, the necessity of calling the North St. Paul police to beg them not to ticket my truck, which was parked outside between 1:30 and 5 a.m. ... and now I couldn't let other people depend on me. I couldn't even depend on myself.

First thing -- well, after planning the tab and getting it to the graphic artist -- I told my boss and the publisher what was up. They didn't think it was so big a deal, but I could see it was a bellwether of things to come.

Such as the poor Bulletin editor, layout day after layout day, hearing me say, "Hey -- was I supposed to have a story for you?" (I then had to tell him, too.)
Such as having to calendar everything and "invite" my husband, lest I be working on my driveway instead of going to a doctor's appointment or staying at work late instead of getting together with a friend.
Such as leaving the stove on all night or leaving the dogs outside and then wondering where they were.

Except perhaps for the kidney pain, none of the other symptoms have been as unnerving as this. I'm usually the organizer in my marriage: the door-locker, the appointment-maker, the one who thinks of the ramifications. Now I have to double-check myself on everything -- if I remember to check the first time...

I'm certainly not alone -- "lack of ability to concentrate" and "memory problems" are cited all over the medical literature. But it's a shock to go from being able to keep track of 4 or 5 tasks to do, one after the other, to not being able to remember where to paste some text copied from a list a half-second ago.

I'm sure it's even more aggravating to my co-workers, since they're presumably still as alert as I once was. I tell 'em "I'm just losing my mind," and they laugh and go along with it. I sure hope I get those IQ points back after transplant.

This phenomenon is so common I actually found it called "kidney brain" in a blog somewhere. Unfortunately, I can't remember where.

Yeah, you know why that is ....

What's up with that?

On the left side of the photo, a polycystic kidney; on the right side, a normal and presumably frightened one.

This is what a polycystic kidney looks like. Current theory is that some programming changes the tubules that are supposed to filter chemicals so they fill with fluid and blow up into cysts.Those then gradually crowd out healthy tissue until there's nothing left to do the kidney's job.
My father had polycystic kidney disease, and so I had a 50 percent chance of getting it, too. We're among half a million people in the U.S. with this disease, which is the most common inherited disease in the country.
My dad went onto dialysis when I was a freshman in college, and got a kidney transplant during the Christmas break when I was a junior. He still has it, 22 1/2 years later!

The weird part about my kidney disease is it doesn't affect the things you'd assume it would -- like urinating. Instead, I've got:

- high blood pressure (was 189/118 unmedicated 12 years ago. Can't imagine what it would be now!)
- fatigue (I brought an Ikea Poang chair in to work a year ago, after I figured out I was often literally too tired to hold my head up, but I could still edit, e-mail and write as long as I had something to lean back on. People thought it looked pretty odd at first, but they've adapted.)
- anemia (This may be the main contributor to the fatigue, bruising, etc. And it prevents me from giving blood at the Red Cross.)
- digestive problems (Pretty much Murphy's Law on this one, for various reasons)
- muscle cramping (Learned to sleep without flexing my lower legs and feet, after months of waking up yelling)
- bruising (The other night I showed my husband my legs, spotted with bruises here and there from mishaps I didn't even remember. "They look like overripe bananas," he commented. No, amazingly enough, he has no new bruising from this encounter!)

Add in the delight of suddenly getting low blood sugar reactions (I can't tell when I'm hungry anymore) bad breath (all that trash piling up again, don't ya know) and freaky stuff like horizontal valleys in my nails, and you can imagine how all-encompassing and puzzling this illness is. "Huh. Is this a new symptom of the same old thing or something I need to worry about?"

Fortunately enough, I don't have a lot of excess energy to spend worrying, thanks to stuff like:

- sleep disturbances (This runs the gamut from not being able to stay awake during the day to not being able to sleep at night. I also suspect my increasing rate of "bad dreams" over the years -- complete with screaming, yelling at people and hitting them in my sleep -- has to do with free-floating chemicals that should have been flushed from my brain)
- what specialists call "cloudy thinking." More on that later. If I remember... ; )

http://ghr.nlm.nih.gov/condition=polycystickidneydisease

Garbage strike

... and no basketball gets played: One view of the summer 2009 garbage strike in Toronto, from torontocitylife on Flickr

"It sounds crude to say, but what's happening is the stuff that's supposed to be in the toilet is still floating around in your body."

-- Dr. Arkady Synhavsky

You've heard about garbage strikes in big cities. A few folks with private contractors can get their trash out, but most can't. Trash piles up in business' trash receptacles, street litter bins, apartment basements. Soon, it's clogging sidewalks, parking spots, building entrances. Simple tasks get increasingly difficult and frustrating.

That's what's happening in my body. My kidneys are failing, and only a few folks are still taking out the garbage.

I'm down to about 18 percent kidney function. At 40 percent, I was neglecting big projects around the house and not taking overtime at work. At about 30, I was falling asleep on the couch after work (yeah, me -- the supposedly light sleeper.) And as I neared 20, my blood-pressure medication couldn't do the job anymore.

The medical community refers to the waste products left lying around my body as "toxins," not "trash" -- reassuring, no? (No.) Whatever you call them, they're clogging up my body and my mind, and they affect almost every system -- except the ones you'd think they would.

Next, what's up with that?