Friday, December 31, 2004

Happy New Year!

image via
Happy New Year!

"And if you survive till two thousand and five
I hope you're exceedingly thin
For if you are stout you will have to breathe out
While the people around you breathe in..."
— Pink Floyd, "Point Me At the Sky," 1968


(You can hear a live BBC version of this early Pink Floyd song, with slightly different lyrics, here at the top-center of the page.)

Sunday, December 26, 2004

The Day of Reckoning, I Reckon

On Wednesday, Dec. 22nd I had the appointment with the nephrologist. I think that for the most part I got the best answers I could reasonably hope for. Here's what I learned:

To begin with, my situation is such that there aren't many absolute, definite answers about my case. I am, he said, in a "gray area" where they can't say many things for certain, but they can give me "most likely" scenarios.

It seems I do have polycystic kidney disease (PKD), but the kind I have is most likely not the most often diagnosed—or the most terrible.

When PKD was first identified, it was discovered to be associated with a mutation on chromosome 16. This type of disease, known as PKD1, is a degenerative disease, growing more and more severe as the sufferer ages, until one or both kidneys shut down.

But researchers soon noticed that only about 85% of PKD sufferers had the mutation on chromosome 16. The other 15% appeared to have nothing wrong with chromosome 16. Most of these people were found to have a mutation on chromosome 4. This form of PKD, called PKD2, is not so degenerative. PKD2 can grow worse in life, but it takes longer, and isn't as severe as PKD1. While PKD1 involves very large cysts covering and enlarging the kidneys significantly, PKD2 is associated with smaller cysts and less pronounced enlargement of the kidneys. People who have PKD2 sometimes never even know it, as it sometimes doesn't cause any symptoms or problems.

There are still some PKD sufferers who have no mutation on chromosome 16 or chromosome 4. These very-rare cases apparently have defects in other areas, but the location hasn't been found yet.

The nephrologist explained all this to me, and then said I probably have PKD2, or perhaps I may be one of those people who don't have either of the identified mutations. In either case, I most likely have a less-severe form of PKD. That is to say, the disease's progress should be quite slow, and I'm not as likely to have renal failure as people with PKD1.

Consistent with PKD2, the cysts on my kidneys are small, although the kidneys are covered with them. There are cysts on both my left and right kidney, but there are fortunately no cysts on my liver, spleen or other organs.

I have still more tests coming up, and will return to the nephrologist in six weeks.

Monday, December 20, 2004

Funny what a logo search turns up

I'm at work and just happened to be looking for a good copy of the logo for the German shoe company called Haflinger. A quick Google search turned up something else altogether. These guys are just beautiful! They look a lot like my favorite horse, the fjord.

Sunday, December 19, 2004

Pain, Pain, Go Away...

I'm looking forward to my appointment regarding the kidney disease, which is coming up on Wednesday, December 22nd. That's the day I'll see the nephrologist. Hopefully he'll have more information for me. The way I see it, there are three things he might say to me:

1) "Yes, it is Polycystic Kidney Disease." I can live with that (so to speak) because I've done some reading on it, have largely settled into the idea of having it, and am prepared to accept it.

2) "It's not PKD; instead, it is..." If he names some other disease, I'll have to "start over", doing reading and research. It might be a good thing if it's not PKD. But it might also be a bad thing, since there's always something worse.

3) "We still can't be sure what this is. You need more tests." That would be the most frustrating of the three scenarios. I just want to know what's going on. I want to give it a name and a diagnosis, because once I know for sure what the problem is, then I can move forward. I hate being stuck in this "don't-know" area where I can't really take the next step because the identity of the disease is not absolutely confirmed.

I'm hoping for an answer like either #1 or #2 on Wednesday.

The pain lately has been coming and going. Last Thursday I didn't even need to take a hydrocodone (the generic Vicodin) because I felt relatively good all day. But on Friday my back way hurting like hell most of the day and night. Saturday, too, I was in significant pain.

Monday, December 13, 2004

Fun With Iodine and Radiation

Thursday, December 9th I went to the "imaging center" for the scheduled testing for my kidneys. When I went there, I only knew that they were going to take another x-ray, but this time with a luminous dye injected into my veins.

First I had to figure out how to get the light blue hospital gowns on properly; the x-ray technician gave me two gowns to put on. "One opens in the back, and the other you put on like a robe," she explained. I didn't understand immediately, and was further baffled to see that the two gowns were identical. How can I put two identical gowns on differently? I thought. After a couple minutes of struggling and feeling like I was failing at some sort of surprise I.Q. test, suddenly it made sense: one gown goes goes over my arms with the opening in the back. The other goes right on top of it, except with the opening in the front. I don't know why they couldn't just have gowns that slip on over your head instead of giving you two gowns that need instructions to understand.

With the gown finally on, the x-ray tech had me stand with my back flat against a big board. A large mechanical device—clearly the x-ray camera—hovered just in front of me. She swiveled it down to over my abdomen so that I was right between the camera andboard. She took several x-rays of my abdomen, a couple directly of my front, then asking me to twist to face roughly 25 degrees left and then 25 degrees right for addition x-rays. Then she said, "There are hand-holds there right by your hand." I grabbed them, and the entire board and camera, including me, tilted back gradually. "Cool, I get a ride!" I said. The tech smiled. The platform stopped once my head was just slightly lower than my feet. She asked me to slightly bend my knees, took another x-ray or two, then had me twist my knees to the left then the right for more angled shots. She then lowered me back to the upright standing position.

She took me to the next room where there was a familiar MRI scanner, much like the one pictured here on the How Stuff Works website. The MRI process was already familiar to me, having had one done only a couple weeks previous, plus another with that hellish "piña colada" luminous drink back around May of 1999.

I laid down on the table/gurney and was lifted in for a quick scan without any dye. The familiar recorded voice told me "breathe... and hold" and before I knew it, the first scan was done. Then the MRI technician hooked up my left arm with the iodine dye which would display my arterial system's functions for the next scan. The needle itself was little more than a quick pang of pain, then it was fine. But the more compelling sensation came as the dye flowed into my veins: a deep, warm "glowing" sensation that radiates and spreads through the body, settling especially strongly in the posterior. Once the dye was coursing through me, the table lifted me up and in, the MRI scanner spun up, and the recorded voice again said, "breathe... and hold." And that was it.

They disconnected me from the iodine, but left the little rubber tube in my arm just in case they needed to redo the scans. I was walked back to the x-ray machine. With my head feeling already mildly foggy and spacey from the iodine dye, the x-ray tech again had me stand against the board, put the large camera up to my abdomen, and swiveled me and the entire camera up once more. This time it tipped back even further so that my feet were perhaps a foot or 18 inches higher than my head. I expect this probably just helped the dye to flow more readily through me. She took a couple more shots, and I was able to watch the x-ray images come up on a screen to my right while she and the radiologists checked the images. I noticed white "bubbles" of varying size around the area of my kidneys, and suspected that maybe those were the cysts. But I didn't ask.

The x-ray tech removed the rubber tube from my left arm, apologizing for the painfulness of removing the strong tape. "I hate having to do this to guys," she said, "I never know whether to do it slowly or in one quick rip." I changed back into my regular clothes, and went out to the car where Elisa was waiting.

The people in the imaging center are not permitted to read the images or discuss any potential diagnosis with me, so I don't know anything about actual results or what the x-rays and MRI scans turned up. My next appointment is to see the Nephrologist on December 22nd. I hope and expect he'll be able to tell me more.

Coon Fancy

image via

The January 2005 issue of Coon Fancy magazine. This is a little affectionate parody I put together, dedicated to Mary Anne Miller, Dora, Patty, Eddie and all the other raccoons and raccoon-lovers of the world.

Check out Mary Anne's raccoon photos.

Friday, December 10, 2004

Polycystic Kidney

image via
Polycystic Kidney 1
Originally uploaded by Rev. Day-Bu.

A kidney damaged by Polycystic Kidney Disease. In a nutshell, PKD is a genetic disease in which cysts grow on the outside of the kidney. The cysts grow larger and larger, gradually damaging the kidney's filters which remove toxins from the bloodstream. PKD causes bad, constant pain, and ultimately--though it can take years--the kidney will fail.

Thursday, December 09, 2004

A Tale of Two Kidneys

Back in 1999 I first became aware that my kidneys had a problem. It started with a hot pain in my back and blood in my urine. I paid a visit to my doctor, and had an x-ray done, then a rather interesting and enjoyable ultrasound, followed up by an MRI scan. The MRI was interesting but unpleasant. Mainly I just remember fasting for the first time ever, the foul-tasting "piña colada" drink loaded with luminous dye that I had to force down just before going for the scan, and then lying on the little gurney, a tube pumping another luminous dye into my veins halfway through the scanning.

In addition to confirming that, yes, I was suffering from kidney stones, the MRI also revealed that I had cysts on my kidneys, particularly my left kidney. The urologist told me that it's common for a person to have a single cyst, but unusual to have cysts all over the kidneys. We talked briefly about a disease called Polycystic Kidney Disease, which is presently incurable, degenerative, and ultimately fatal. Needless to say, this was definitely not news I wanted to hear. The urologist was, however, very reassuring. Since I haven't shown any symptoms of anything the cysts would cause, they couldn't really diagnose the cysts as being anything. Until I experienced some symptoms, he said, I should just put it out of my mind and not worry about it.

I did exactly that. I put the cysts at the back of my mind, and saved my attention and energy for the kidney stones.

I dealt with something like six or ten bouts of kidney stones over the next five years, becoming intimately familiar with the symptoms. One episode was particularly horrible, with intense pain like nothing I could have ever imagined. It literally had me crippled, hunched over moaning and gasping until my wife came home and took me to the emergency room where I was treated to the dreamy painlessness of a morphine drip. I've since been told that passing a kidney stone can sometimes be even more painful than childbirth. I'm sure that particular instance was just such a case. I haven't experienced that level of pain again since then, and hope I never have to.

Sometime back near the start of the summer of 2004—June or July—I started having a strange pain in the left side of my back. It only stood out a little from my usual arthritis pains, and I figured I'd just pulled a muscle or something. No biggie.

Problem is, come September it was still there, and subtly worsening. As I worked on all the campaigning stuff in September and October, it just kept getting worse, to the point where sometimes just turning very slightly would cause a sudden, intense pain to rip through my side. Sometimes it feels as though there's something inside my left side, something jabbing me inside. It had to be a particularly bad kidney stone, I figured, and I only hoped it wouldn't be as painful as the episode which had landed me in the E.R.

During the last week or two before the presidential election, it got to the point where I had to start popping hydrocodones (generic Vicodin) to deal with it. I had a prescription for the pain killers endocet and hydrocodone for when I had particularly bad kidney stone pains. I know pain killers are a popular drug to abuse, but I've always been clean—I don't even drink alcohol or smoke—so I really don't have any interest in abusing those pain killers. But they sure come in handy when the pain gets especially bad.

With the pain severe enough to force me into taking hydrocodone, I quit procrastinating and made an appointment with my doctor. Around the time of the election, the pain got really serious, and didn't go away. It became a constant burning pain, growing and fading but never disappearing altogether. And if I turned or bent to get a paper or something, I often got a sudden flare of pain that makes me actually cry out uncontrollably.

I felt sure that the source must be a bunch of jagged kidney stones that just weren't coming loose and dropping from my kidneys. That's just my wild theory. At times it felt like a cracked the lowest rib on my left side, but it didn't hurt when I touched the rib, which it would if it was broken. (Plus, a broken rib would have healed long ago.)

The night of November 9th, I foolishly let myself doze off right on the carpeted-but-hard floor. I woke up four hours later lying right on the painful part of my left side. D'oh! Needless to say, it hurt like f*ing HELL for several days after.

On November 11th I saw the doctor and got two x-rays taken. I got to see the x-ray plates myself. I saw what looked exactly like two kidney stones. One was about the usual size (about as big as the fingernail on the pinkie finger), but one of them was damn near the size of a walnut! Holy crap, I couldn't believe it was that big...

A couple weeks passed, but no stone passed and the pain just kept on burning, aching, and occasionally stabbing me when I turned or leaned the wrong way. In that time, I had a new MRI done—this time without Satan's favorite drink (that horrible, luminous "piña colada") and without any needles in my arm to inject dye.

On Monday, December 6th I saw the same urologist I had visited in 1999. I fully expected to be told I was experiencing a nasty stone or two, and that they would have to use lasers or sonic frequencies to break it up. I thought that I would ask, if I remembered, whether the cysts had changed.

It didn't turn out to be that simple at all.

I don't have any kidney stones in my system right now. There are a few way up in my left kidney, but they haven't "dropped" yet, which means they're currently not a problem and not the source of the pain. There are no stones in the tracts now. So kidney stones are currently not a problem, and have nothing to do with the bad pain I've been having the last few months.

The MRI turned up that thing which I'd put out of my mind five years earlier: the cysts all over my kidneys. The cysts, the urologist told me, have grown, spread and worsened significantly. These cysts are the origin of the constant pain. They show all the signs of being degenerative, and now the doctor—with clearly apparent surprise himself—said this really looks like PKD.

I'm in line now for a small battery of tests and appointments. This afternoon I'm going for another X-ray, this time with iodine dye to illuminate all the nifty little tubes and veins.I'm going to another kidney specialist soon—this one a renal surgeon, a nephrologist—for further diagnosis. I'm also

I'm not upset or freaked out so much as I'm just shocked and numb. The prognosis doesn't look very good right now, but I'll adapt and adjust no matter what. I'm prepared to accept anything. Or at least I think I am. I'll just take things as they come, and see how well I can ride out the waves.

Later today I have the next x-ray done, including some kind of luminoud dye. Meanwhile, I've found a couple good resources for information about PKD:

The PKD Foundation

The New Zealand Kidney Foundation's fact sheet on Polycystic Kidney Disease

The PKD Access Center

Sunday, December 05, 2004

Bizarre crash

image via
Bizarre crash
Originally uploaded by Rev. Day-Bu.

Yesterday I had one of the weirdest application crashes I've had in a long time. This is a screenshot.