May 8th, 2014

hide, headache

Mostly nephrologist, but also my head and other stuff

Woke up around 5:30 a.m. with a terrible headache, so I washed my hair—something I often do now if I wake early with a bad headache, because I might as well take care of something I can do in that state, right?—and now I'm still only mostly awake, waiting for my head to feel better, so I thought I'd write about yesterday's appointment with the new nephrologist. My headache is still bad, so this will most likely be a bit disjointed, but so it goes.

The Creatinine Levels

First of all, Dr. Dierks says that everyone's creatinine levels vary naturally, depending on how much they've drunk, urinated, etc., in the days and hours immediately preceding the blood draw and urinalysis. He thinks my creatinine variation within the range of 1.4-1.6 since going off lithium is nothing to worry about, unless it begins to show a tendency to consistently worsen. In fact, he says that my kidney function most likely did not actually improve after I went off lithium, as we thought it did, and the creatinine variation throughout 2013 (including before I went off lithium) indicates a fairly consistent kidney function with natural variation. So, really, my kidneys are probably the same as they've been for more than a year, since before I went off lithium, but at least they aren't getting worse.

Sure, going on some kind of extreme diet—such as when the previous nephrologist had me drowning myself in sodium—will affect the numbers in the short term, but it doesn't change the overall kidney function in the long term, which seems pretty stable. Therefore, he sees no reason for me to do anything extreme with my diet or behavior, because he doesn't think any of it is likely to change my long-term kidney function.

He says he sees no reason at all to drink Gatorade unless I just want to drink Gatorade. He sees no harm in it & no benefit from it. He wants me to just eat and drink what feels natural, within a few simple constraints that most likely apply to most people, regardless of kidney function: don't go too protein heavy, eat lots of fruit and vegetables, whole grains are good, etc. I'm not sure how this will work with my appetite issues, so we'll have to see.

Weight and Kidneys

The one thing he said could significantly affect my long-term kidney function is my weight. He urged—perhaps even insisted—that I lose some weight for the good of my kidneys. When I talked about walking and—once I can see properly—bicycling, he urged me to join a gym in addition, because he wants me to do more really vigorous exercise. Just biking for transporation isn't enough. He doesn't want me to try to eat less—though eating a bit healthier (i.e., fewer cookies & less frequent ice cream indulgence) wouldn't go amiss—but rather rely on increasing my physical activity. This makes sense to me. Making sure to eat plenty of food to give my body the nutrients it needs to keep the kidneys going doesn't mean I can't work on losing weight; it just means I will need to do it through exercise alone instead of combining it with lower caloric intake (as most people trying to lose weight do). I'll still work on getting plenty of food & not worry too much about my diet.

So I will rejoin the Y, but not immediately. It will require filling out a bunch of paperwork to get their low-income discount rate, and now is not the time to add bureaucratic tasks to my To Do list. After the surgeries I'll worry about it. And this time I'll actually go to the Y. It's for my kidneys. I can make myself do stuff for my kidneys, because bad kidneys are scary. Just doing things—eating a healthy diet, getting exercise—for some vague sense of Health is different from doing things because my kidneys need it. Knowing that my kidneys are vulnerable, knowing what can happen if I don't take care of them, having a very specific, concrete reason for healthy living habits makes a big difference to my motivation.

Proactive Nephrologists

Since we are making some immediate changes—primarily the relaxed approach to Gatorade—we're going to run some labs in 2-3 weeks to see how my kidney numbers react as a result. The nephrologist said this & filled out the lab order as if this was the obviously smart thing to do, without me having to lobby for it and insist that it was necessary, which I liked. I like having someone saying, "Let's make sure everything is okay," instead of, "Everything is okay. We don't need to check." Too many doctors are lazy, in my opinion. (Like the neurologist who told me almost a year ago that I had a pinched nerve in my neck, then just sent me home to eventually develop severe headaches resulting from a pinched nerve in my neck.)

In fact, I like this new nephrologist a fair amount. He talks a lot—even more than I do—and sometimes goes off on tangents (interesting tangents, relevant tangents, but still: tangents), so I interrupted him often with questions that "cut to the chase." He always answered my questions directly & succinctly, and clarified if I asked for it. I like this.

When I asked him about my long-term prognosis, he said that I could possibly (though not probably) end up on dialysis eventually—given that I'm at less than 50% kidney function & people tend to lose about 1% each year as they age—but that he wouldn't expect it to be necessary within the next decade at least, and even if I did end up "on dialysis" eventually, he felt that the meaning of that concept by then would most likely be completely different than it is now, because of the scientific advances that are being made toward building an artificial kidney. He says that a decade from now being "on dialysis" will most likely just mean having an implant to assist your kidneys in filtering your blood inside your own body. (He went off on a fairly extended tangent about the scientific advances currently being made & urged me to look up some guy who created an artificial bladder, even wrote down the guy's name & the URL of a website where I could learn about him. I didn't mind too much, especially since he was very willing to be redirected toward my own specific case when prompted, because it means he's actually keeping up with current scientific research, which I like.)

He gave me some info about a local support group for folks with kidney disease, which meets in Oakland every Sunday, which was totally news to me. I had tried to find a group like this when I was first diagnosed, but had no luck. It's rather nice to have a doctor who encourages me to advocate for my own wellness & gives me info to help me with doing that.

Diabetes Insipidus

He thinks I most likely still have diabetes insipidus, though I had thought it was gone. He seems to think that I was misled by how much my thirst/urination has improved since I went off lithium. Sure, it's gotten a lot better—TONS better—but I still drink and pee more than most people. I now occasionally leave the house without my water bottle when I know I'll only be gone an hour or two, but this often results in me buying a bottle of water while I'm out. I can't really comfortably go an hour without drinking. I now only wake once each night to pee and drink, but I do still wake up every night to pee and drink. (Okay, not every night. Two or three times since going off lithium nearly a year ago, I've slept through the night. Maybe four times.)

He asked me—if I were to keep track—do I think I pee a gallon a day? I said no, quite definitively, and he said that my lab results still indicate that I probably still have diabetes insipidus. I've been sort of casually keeping track since we had that conversation, and I think I do probably pee a gallon a day; it's just so tremendously better than it was when I was still on lithium that "a gallon" sounded like a lot. I mean, I suppose it is a lot—hence there being a medical diagnosis related to it—but it's much more tolerable for me now than it used to be. I can sometimes go 4 hours without a bathroom! I can hike! I can go to a parade! I don't have to constantly scan for the nearest bathroom just in case!

But the thirst/pee situation hasn't really changed in the past several months—not since a couple months after I went off lithium—and thus seems to have stabilized, so it may not ever go away completely. When I first looked into diabetes insipidus online—after it was mentioned to me by the government psychiatrist I had to see during my reassessment re: eligibility for disability, because of course my regular (EVIL) psychiatrist had never seen fit to mention it to me—I had read that it sometimes never goes away & I'd been freaked out by that—because it was seriously impacting my life every single day, all day long—but I was incredibly relieved when it got so much better 2 or 3 months after I'd gone off lithium. Okay, so it might never go away entirely, but it's in a place I can deal with now. I don't feel a need to treat it with medication—I take enough medication as it is!—since it doesn't (as far as I can tell) have any real effects except the inconvenience of having to find a bathroom frequently.

Let Me Sum Up

So I like the new nephrologist. He's gigantic—not fat, but solid & maybe 6'10"—and that's sort of instinctively intimidating, but he treats me like an intelligent equal, and that rocks. Also, he seems to understand me when I talk & I believe I understand him when he talks, and that's a definite improvement.

My only real problem with the appointment was that I started getting a headache while I was in his office. It started while I was still in the waiting room, so I took a Tylenol #3, not wanting to get too loopy while away from home & knowing that I wouldn't be home for at least a couple hours. I ended up being at his office for about an hour + a half (because he actually talked with me for about an hour!), and during that time the headache started getting really bad, but I didn't want to take another pill when I knew I had a long trip on public transit ahead of me & didn't want to be stumbling through Oakland doped up on codeine. The headache got worse and worse, and by 4:50 p.m. or so I was thinking about calling Shannon & asking if he could come & help me get home if I took another pill & ended up loopy, but he was going gaming & I didn't want to mess that up & it would have been ridiculously inconvenient to ask anyone to come just to help me get home in the middle of rush hour & I didn't trust some random taxi driver when I'm so loopy & so I just didn't take another pill. (I know some of my friends will insist that they would have come to help me get home, but it just feels ridiculous to ask that of people.)

By the time I left, my head was pretty bad. The codeine makes me loopy, but the headaches make thinking difficult in a different way. So I made it home, but I made some unwise decisions along the way, such as taking the wrong bus (but in an inconvenient—not disastrous—way). Due to taking the wrong bus, I had to transfer in Rockridge & had a long wait, so I went to the Trader Joe's that's right there & bought myself a pack of my favorite cookies (I was also quite hungry at this point, because it was about 6 p.m.) and ate several of them at the bus stop. People who had gotten off the first bus with me were still sitting at the stop after my Trader Joe's run, still waiting for the second bus, so I was glad I spent some of that time getting myself Comfort Cookies.

The day had started out great, with me wearing new jeans that are extra comfy & yet not all baggy & shapeless, with the bus driver telling me I have a pretty smile, with my therapist telling me that my new haircut is very flattering, with me talking to my therapist about how I've been playing with art lately, just messing around and not worrying about results, not being all efficient and goal-directed, and about how I've never been very good at playing, and so this is amazingly wonderful & seems to be actually helping me feel less stressed about the parts of my life that are efficient and goal-directed. All that good stuff is still there, and I'm still aware of it, but the end of the day included a lot of hurt.

But my new jeans are comfy & make me feel pretty, and somebody thinks I have a pretty smile, and somebody thinks my hair looks nice, and I've been having fun with acrylic paints, and I'm learning how to play. These are all things that make me happy.

And now that I've written all this & my hair is all happy & clean & the sun is up (though the sky is overcast), I find that my head is feeling better & I think I may be able to go to my writing group & lunch with Lisa as planned. I'm not certain, because the headache is better but not gone & I'll see how the next 2 hours go (since we don't meet for writing until 10:30), but I have high hopes. Ack. Annoying song stuck in my head!

Okay, now that I think about it, my head is still hurting a fair amount. Time to do some physical therapy stretching stuff & stop using my eyes so much. I can't see worth a damn nowadays, but 3 weeks from now that should no longer be a problem!!!!!!!!!!! (I don't normally use multiple exclamation points, but right now, regarding this particular issue, it feels EXTREMELY warranted, as are ALL CAPS.)