In Which My Kidney Tries to Kill Me
Feb. 24th, 2018 02:31 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
shannon_aThe saying that life changes in a second is an accurate one. Something unexpected happens, and your whole focus changes. But it's also inaccurate. Because you incur debts in life, and sometimes they come due in a big balloon payment.
I'm not very fond of the word balloon right now.
Two and a half years ago. In late 2015, just before the first Rebooting the Web of Trust design workshop, I started having some uncomfortable issues that sent me to a urologist. We never really solved them, though I spent a year going back and forth to their office. We eventually expended all their tests, and the problems abated to some extent (though never totally).
One and a half years ago. In June, 2016 my urologist had a CT scan of my abdomen done, and it revealed a 4mmx3mm kidney stone in my right kidney. The doctor and I talked. He said that he could use sonic waves (ESWL) to break up the kidney stone, but it was obvious that he preferred not to. He talked about how maybe it would pass, and maybe not, and maybe it would be a problem, and maybe not, so why buy trouble now.
As with many doctors, he refused to exactly make a recommendation but after repeated questions on my part, I agreed that we'd let it be.
I put a TODO item on my Hawaii list for May 1st, 2019 that says, "Procedure for kidney stone?" I wasn't sure that I wanted to wait until we moved, because I suspected that ESWL might require a trip to Honolulu, so if it hadn't passed in a few years on its own, I wanted to talk to someone about getting it done well before things got stressful as we prepared our move.
(I've just checked that item off my list.)
Nine Days Ago. While in the shower, I had about two minutes of sudden pain in my right side, followed by numbness.
"I wonder if that's that kidney stone finally moving," I thought.
Seven Days Ago. I hiked up to Tilden Park. After a lot of climbing and some lunching, then more climbing. I finally landed in the Owl Picnic Area. It was entirely deserted because it's on South Park Drive, and South Park Drive is closed in the winter, to protect the newt migrations.
I began drinking water and writing and drinking water and writing.
Thirty or forty minutes in, I became aware of an increasing pain in my side. I've often heard people describe kidney stones as the worst pain that they've ever had in their life, and I wouldn't. I've had much worse pain from sudden events any number of times, such as banging my head. I've had (very bad) headaches that were more painful.
The difference was that this pain was unrelenting. I absolutely could not get comfortable in any way. And, it was incapacitating. I couldn't do anything.
I was still pretty sure it was a kidney stone, nothing scarier. But I eventually decided that I wanted to try and get home. In retrospective, I should have walked the quarter-mile or so up South Park Drive to Grizzly Peak Drive, at which time I could have caught a Lyft. But, my brain wasn't working the best, and among other things I thought I was further down South Park Drive than I really was. So instead I walked about a mile-and-a-half down South Park Drive, then up to the Brazillian Room, where the bus stop is.
It is the hardest walk I've ever made. I mean it's a clean, asphalt street, and I could walk right down the middle of it, because it was closed. But somehow the fact that it's got a slope of 5 to 10 degrees made it almost unnavigable, even though I was walking DOWN the slope. I had to take several breaks. Sometimes I just leaned all the way over. It was interminable.
I was in less pain by the time I sat down to wait for the bus. I was able to walk home without problem when I got into Downtown Berkeley. I was still in some pain until I napped a bit, after I got home, but it was clearly waning.
Six Days Ago. Sunday afternoon, K. decided to have a nap, so I went out for a planned two-hour outing. Up to Clark Kerr, around the hillside paths to Panoramic Hill, down the hill, a pause to make haircut reservations while sitting at some stone benches on the Bancroft Steps near the Stadium, then a walk down to Great Clips, a buzz cut, and a walk home.
When I was sitting in the barber chair, I was starting to feel uncomfortable.
By the time I got home, I was having another attack of pain. I eventually went to lie down in the bed, upstairs, because I couldn't get comfortable on the couch.
The worst of it was about an hour, again.
I was displeased by the pain, but also aware that it meant the kidney stone was moving. I felt like I could take it an hour at a time like this.
Three Days Ago. Out at gaming Wednesday night I was feeling increasingly uncomfortable throughout the game. I got home, and we watched half the Amazing Race finale, and by the end I was feeling horrible.
That was 11pm, and I was unable to get to bed until 2am.
In the meantime, I made an appointment to see my doctor the next day at 3pm.
I was woken up by the pain at 4.30am. Waiting another 10 or 11 hours to see anyone seemed like an absolute eternity, so I moved my appointment up to 11.30am. Finally I started nodding off on the couch around 6am and crawled by upstairs to get back into bed.
I wasn't comfortable, but I was no longer in extreme pain either.
Two Days Ago. I got in to see the doctor, and she seemed confident with my diagnosis that it was probably a kidney stone. She sent me for some urinalysis to make sure that there was nothing funny going on and also an x-ray to make sure that this was indeed the 4mmx3mm stone, and that "it hadn't passed and we were seeing some other one".
She also prescribed some drugs. I'd done my research the night before, and learned that they'd had some beneficial studies of both alpha blockers and calcium channel blockers. They both increased the odds of the stone passing, they both decreased patients' use of pain killers, and the alpha blockers also decreased the time of passing. These were all notable changes too. Versus a control group that passed 48% of stones (or something like that) the patients taking one blocker or the other passed 80-89%, and the increased speed with the alpha blockers was by several days. So, the doc prescribed me the alpha blocker I wanted, which was one I'd taken before during my wasted year of urology in 2016. We also talked about pain killers, and though I wasn't willing to jump into an opiate (yet), she prescribed me 800mg Ibuprofen and told me she'd prescribe me something stronger if I just mailed her and asked.
She was also quite positive. I've got a planned (work) trip scheduled for the first full week of March, and she said she thought I'd be able to pass the kidney stone in the next several days with the alpha blocker.
My appointment was half-an-hour late, with me not getting back to see the doctor until about noon, but from there I went through the laboratory, the pharmacy, and the imaging lab within two hours — most of that in the imaging lab. In fact, I'm pretty sure I was eating a very tasty salad in the Kaiser hospital café within two hours.
I took the alpha blocker while waiting for my x-ray and the Ibuprofen with lunch. I talked to C. about an hour later about work stuff, and told him, "I'm literally feeling no pain". And it was true.
Meanwhile, my biggest concern over the x-ray was that they'd come back and say, "We didn't see a kidney stone", in which case we wouldn't know why the heck I was having pain.
Still Two Days Ago. People were coming over for gaming Thursday night. Because I was severely sleep deprived and because I did know how I'd be feeling, I backed off the complex game I was going to learn (First Martians) and instead offered up a continuing adventure in our PACG: Mummy's Mask adventure path.
Except about 15 minutes before people arrived, I stopped in at my desktop computer and found mail from my doctor.
She'd seen the kidney stone on the x-ray.
It was 7mm big.
From what I've read, under 4mm usually passes, 4mm-6mm is iffy, and 6mm+ passes rarely, and can take a year to do so.
She suggested an ultrasound as the next step, and this made me even unhappier because she'd just told me a few hours earlier that Ultrasounds took time at Kaiser. I just wanted to move on to killing the stone with sonic rays. Like, immediately.
I was still in shock when people were arriving for gaming. I hope I wasn't too bad of company or too obsessive about this problem, but it was freshly splayed across my mind.
One Day Ago. The imaging lab actually called me in the afternoon. I was worried about their doing that. Their first appointment was March 14th, nineteen days away. Which was almost exactly as bad as I'd guessed. The only almost bright side is that they didn't have any openings during the week I'm supposed to be away at the next Rebooting the Web of Trust, so I didn't have to make any hard decisions there (though I have any even more real time bomb than before, one that could fully obstruct my kidney or cause an infection at any time, and that makes me absolutely loathe to be away from home).
Today. Eighteen days from my ultrasound. I absolutely hate being in a situation where I'm counting the days like that. Two days without any notable pain, and that included getting groceries yesterday and hauling some very heavy bags around. I do have twinges in my abdomen, and I wonder if I'm having pain that's just being obscured, or if the anti-spasmodic properties of the alpha blocker are keeping it from turning up at all. Right now, I have an almost-stitch in my right side, as I type.
I'm still an unhappy camper, though less so than Thursday night.
Here's the existential concern. One of two things happened. Either I passed the 4mmx3mm stone from 2016 without noticing, and a second stone quickly followed it in the same kidney; or that 4mmx3mm stone continued to grow in my kidney, and is now the 7mm stone I'm facing.
If it was the first, then I'm freaking the heck out, because two stones in two years in very unhappy making, especially with one of them too big to pass.
If it was the second, then it's yet another doctor committing malpractice and he obviously should have killed that stone with sound when he found out about it, but I can deal with being pissed with him, because it'll pass.
So, hopefully it's the second. I've asked my current doctor if there's any way to know, but she never responded on Friday (nor to my question of why we haven't just moved straight on to killing the stone with sonic rays).
Here's the psychological concern. My first two attacks of note both came about when I was out exercising. Then my 12-hour attack came when I was out and about again. I'm now a little scared to go out and do things. Last night's grocery-getting made me feel a little better, and I don't think a month of this will make me agoraphobic or anything, but I hate having a pressure fighting against my going out and being healthy.
Here's the first physical concern. The idea that ongoing, unstoppable pain could hit me at any time is frightening. Before Thursday, I could feel like, "Hey, it's moving the stone, this is progress." But, if this is a stone that is very unlikely to pass without being destroyed by sonic waves, I no longer have that sop.
Here's the second physical concern. Things could go south quickly. That's not a problem while I'm sitting here in the East Bay, but it makes me very concerned about going down to Santa Barbara for our sixth Rebooting the Web of Trust design workshop. I don't really want to be that far away from my doctor and my ER, and I've not been able to find any documents on whether my Kaiser plan is totally open or if it curtails networks in this modern era of anti-health-care in the US. I should probably call someone next week.
(Because if it's totally open, there's some Kaiser not too far south of Santa Barbara.)
Here's the chronological concern. It took 19 days to make my ultrasound appointment. If that were an end-point, I'd be unhappy but live with it. But that's just a step before making an ESWL appointment. The idea of 19+19 days of possible pain is unfathomable. And who knows how long an ESWL appointment will really take. It's also a little scary when the literature I've read says that a kidney can be obstructed for 30 days without damage, which is less than 19+19.
I've asked my doctor why we aren't just moving straight on to the ESWL. That's part of the message that she hasn't responded to. If she says they need the ultrasound, my next question will be if we can get it scheduled for right after the ultrasound.
And meanwhile I'm wondering if I'll end up the ER due to uncontrollable pain or fever or other problem due to this pissing around.
Here's the whiny concern. I thought I had the problem dealt with when I had those two one-hour periods of pain, and I decided that I could deal with that over the month or less required to pass a 4mm kidney stone. I thought I had the problem dealt with when I learned about alpha blockers, went into the doctor, and got the alpha blockers and pain killers I needed, with a plan for better pain killers if required.
I no longer feel like I have the problem dealt with.
As the saying goes, this too will pass. But probably not without ESWL.
I'm not very fond of the word balloon right now.
Two and a half years ago. In late 2015, just before the first Rebooting the Web of Trust design workshop, I started having some uncomfortable issues that sent me to a urologist. We never really solved them, though I spent a year going back and forth to their office. We eventually expended all their tests, and the problems abated to some extent (though never totally).
One and a half years ago. In June, 2016 my urologist had a CT scan of my abdomen done, and it revealed a 4mmx3mm kidney stone in my right kidney. The doctor and I talked. He said that he could use sonic waves (ESWL) to break up the kidney stone, but it was obvious that he preferred not to. He talked about how maybe it would pass, and maybe not, and maybe it would be a problem, and maybe not, so why buy trouble now.
As with many doctors, he refused to exactly make a recommendation but after repeated questions on my part, I agreed that we'd let it be.
I put a TODO item on my Hawaii list for May 1st, 2019 that says, "Procedure for kidney stone?" I wasn't sure that I wanted to wait until we moved, because I suspected that ESWL might require a trip to Honolulu, so if it hadn't passed in a few years on its own, I wanted to talk to someone about getting it done well before things got stressful as we prepared our move.
(I've just checked that item off my list.)
Nine Days Ago. While in the shower, I had about two minutes of sudden pain in my right side, followed by numbness.
"I wonder if that's that kidney stone finally moving," I thought.
Seven Days Ago. I hiked up to Tilden Park. After a lot of climbing and some lunching, then more climbing. I finally landed in the Owl Picnic Area. It was entirely deserted because it's on South Park Drive, and South Park Drive is closed in the winter, to protect the newt migrations.
I began drinking water and writing and drinking water and writing.
Thirty or forty minutes in, I became aware of an increasing pain in my side. I've often heard people describe kidney stones as the worst pain that they've ever had in their life, and I wouldn't. I've had much worse pain from sudden events any number of times, such as banging my head. I've had (very bad) headaches that were more painful.
The difference was that this pain was unrelenting. I absolutely could not get comfortable in any way. And, it was incapacitating. I couldn't do anything.
I was still pretty sure it was a kidney stone, nothing scarier. But I eventually decided that I wanted to try and get home. In retrospective, I should have walked the quarter-mile or so up South Park Drive to Grizzly Peak Drive, at which time I could have caught a Lyft. But, my brain wasn't working the best, and among other things I thought I was further down South Park Drive than I really was. So instead I walked about a mile-and-a-half down South Park Drive, then up to the Brazillian Room, where the bus stop is.
It is the hardest walk I've ever made. I mean it's a clean, asphalt street, and I could walk right down the middle of it, because it was closed. But somehow the fact that it's got a slope of 5 to 10 degrees made it almost unnavigable, even though I was walking DOWN the slope. I had to take several breaks. Sometimes I just leaned all the way over. It was interminable.
I was in less pain by the time I sat down to wait for the bus. I was able to walk home without problem when I got into Downtown Berkeley. I was still in some pain until I napped a bit, after I got home, but it was clearly waning.
Six Days Ago. Sunday afternoon, K. decided to have a nap, so I went out for a planned two-hour outing. Up to Clark Kerr, around the hillside paths to Panoramic Hill, down the hill, a pause to make haircut reservations while sitting at some stone benches on the Bancroft Steps near the Stadium, then a walk down to Great Clips, a buzz cut, and a walk home.
When I was sitting in the barber chair, I was starting to feel uncomfortable.
By the time I got home, I was having another attack of pain. I eventually went to lie down in the bed, upstairs, because I couldn't get comfortable on the couch.
The worst of it was about an hour, again.
I was displeased by the pain, but also aware that it meant the kidney stone was moving. I felt like I could take it an hour at a time like this.
Three Days Ago. Out at gaming Wednesday night I was feeling increasingly uncomfortable throughout the game. I got home, and we watched half the Amazing Race finale, and by the end I was feeling horrible.
That was 11pm, and I was unable to get to bed until 2am.
In the meantime, I made an appointment to see my doctor the next day at 3pm.
I was woken up by the pain at 4.30am. Waiting another 10 or 11 hours to see anyone seemed like an absolute eternity, so I moved my appointment up to 11.30am. Finally I started nodding off on the couch around 6am and crawled by upstairs to get back into bed.
I wasn't comfortable, but I was no longer in extreme pain either.
Two Days Ago. I got in to see the doctor, and she seemed confident with my diagnosis that it was probably a kidney stone. She sent me for some urinalysis to make sure that there was nothing funny going on and also an x-ray to make sure that this was indeed the 4mmx3mm stone, and that "it hadn't passed and we were seeing some other one".
She also prescribed some drugs. I'd done my research the night before, and learned that they'd had some beneficial studies of both alpha blockers and calcium channel blockers. They both increased the odds of the stone passing, they both decreased patients' use of pain killers, and the alpha blockers also decreased the time of passing. These were all notable changes too. Versus a control group that passed 48% of stones (or something like that) the patients taking one blocker or the other passed 80-89%, and the increased speed with the alpha blockers was by several days. So, the doc prescribed me the alpha blocker I wanted, which was one I'd taken before during my wasted year of urology in 2016. We also talked about pain killers, and though I wasn't willing to jump into an opiate (yet), she prescribed me 800mg Ibuprofen and told me she'd prescribe me something stronger if I just mailed her and asked.
She was also quite positive. I've got a planned (work) trip scheduled for the first full week of March, and she said she thought I'd be able to pass the kidney stone in the next several days with the alpha blocker.
My appointment was half-an-hour late, with me not getting back to see the doctor until about noon, but from there I went through the laboratory, the pharmacy, and the imaging lab within two hours — most of that in the imaging lab. In fact, I'm pretty sure I was eating a very tasty salad in the Kaiser hospital café within two hours.
I took the alpha blocker while waiting for my x-ray and the Ibuprofen with lunch. I talked to C. about an hour later about work stuff, and told him, "I'm literally feeling no pain". And it was true.
Meanwhile, my biggest concern over the x-ray was that they'd come back and say, "We didn't see a kidney stone", in which case we wouldn't know why the heck I was having pain.
Still Two Days Ago. People were coming over for gaming Thursday night. Because I was severely sleep deprived and because I did know how I'd be feeling, I backed off the complex game I was going to learn (First Martians) and instead offered up a continuing adventure in our PACG: Mummy's Mask adventure path.
Except about 15 minutes before people arrived, I stopped in at my desktop computer and found mail from my doctor.
She'd seen the kidney stone on the x-ray.
It was 7mm big.
From what I've read, under 4mm usually passes, 4mm-6mm is iffy, and 6mm+ passes rarely, and can take a year to do so.
She suggested an ultrasound as the next step, and this made me even unhappier because she'd just told me a few hours earlier that Ultrasounds took time at Kaiser. I just wanted to move on to killing the stone with sonic rays. Like, immediately.
I was still in shock when people were arriving for gaming. I hope I wasn't too bad of company or too obsessive about this problem, but it was freshly splayed across my mind.
One Day Ago. The imaging lab actually called me in the afternoon. I was worried about their doing that. Their first appointment was March 14th, nineteen days away. Which was almost exactly as bad as I'd guessed. The only almost bright side is that they didn't have any openings during the week I'm supposed to be away at the next Rebooting the Web of Trust, so I didn't have to make any hard decisions there (though I have any even more real time bomb than before, one that could fully obstruct my kidney or cause an infection at any time, and that makes me absolutely loathe to be away from home).
Today. Eighteen days from my ultrasound. I absolutely hate being in a situation where I'm counting the days like that. Two days without any notable pain, and that included getting groceries yesterday and hauling some very heavy bags around. I do have twinges in my abdomen, and I wonder if I'm having pain that's just being obscured, or if the anti-spasmodic properties of the alpha blocker are keeping it from turning up at all. Right now, I have an almost-stitch in my right side, as I type.
I'm still an unhappy camper, though less so than Thursday night.
Here's the existential concern. One of two things happened. Either I passed the 4mmx3mm stone from 2016 without noticing, and a second stone quickly followed it in the same kidney; or that 4mmx3mm stone continued to grow in my kidney, and is now the 7mm stone I'm facing.
If it was the first, then I'm freaking the heck out, because two stones in two years in very unhappy making, especially with one of them too big to pass.
If it was the second, then it's yet another doctor committing malpractice and he obviously should have killed that stone with sound when he found out about it, but I can deal with being pissed with him, because it'll pass.
So, hopefully it's the second. I've asked my current doctor if there's any way to know, but she never responded on Friday (nor to my question of why we haven't just moved straight on to killing the stone with sonic rays).
Here's the psychological concern. My first two attacks of note both came about when I was out exercising. Then my 12-hour attack came when I was out and about again. I'm now a little scared to go out and do things. Last night's grocery-getting made me feel a little better, and I don't think a month of this will make me agoraphobic or anything, but I hate having a pressure fighting against my going out and being healthy.
Here's the first physical concern. The idea that ongoing, unstoppable pain could hit me at any time is frightening. Before Thursday, I could feel like, "Hey, it's moving the stone, this is progress." But, if this is a stone that is very unlikely to pass without being destroyed by sonic waves, I no longer have that sop.
Here's the second physical concern. Things could go south quickly. That's not a problem while I'm sitting here in the East Bay, but it makes me very concerned about going down to Santa Barbara for our sixth Rebooting the Web of Trust design workshop. I don't really want to be that far away from my doctor and my ER, and I've not been able to find any documents on whether my Kaiser plan is totally open or if it curtails networks in this modern era of anti-health-care in the US. I should probably call someone next week.
(Because if it's totally open, there's some Kaiser not too far south of Santa Barbara.)
Here's the chronological concern. It took 19 days to make my ultrasound appointment. If that were an end-point, I'd be unhappy but live with it. But that's just a step before making an ESWL appointment. The idea of 19+19 days of possible pain is unfathomable. And who knows how long an ESWL appointment will really take. It's also a little scary when the literature I've read says that a kidney can be obstructed for 30 days without damage, which is less than 19+19.
I've asked my doctor why we aren't just moving straight on to the ESWL. That's part of the message that she hasn't responded to. If she says they need the ultrasound, my next question will be if we can get it scheduled for right after the ultrasound.
And meanwhile I'm wondering if I'll end up the ER due to uncontrollable pain or fever or other problem due to this pissing around.
Here's the whiny concern. I thought I had the problem dealt with when I had those two one-hour periods of pain, and I decided that I could deal with that over the month or less required to pass a 4mm kidney stone. I thought I had the problem dealt with when I learned about alpha blockers, went into the doctor, and got the alpha blockers and pain killers I needed, with a plan for better pain killers if required.
I no longer feel like I have the problem dealt with.
As the saying goes, this too will pass. But probably not without ESWL.
no subject
Date: 2018-02-25 04:56 pm (UTC)