During Monday's dialysis I was in the same room as an old, old woman. She was so far gone that she had to pee every thirty minutes. The desire to live on is so strong that one keeps going even when the body has already given up.
Today I'm in a room with a woman who has ominously gloved hands---I hate to think what lies inside. She's also far gone---I would say she is barely alive. Then there's another guy, he can barely stand. A third guy has an oxygen mask.
I can imagine that at this stage of one's life one wants to somehow keep living on, at any cost. A favorite grandson or great-grandson that you want to see grow up, there must be a real strong motivator to keep these people coming back for more dialysis. But there has to come a point when the motivation curve changes direction. How can this be any fun? I hope that the Germans have better policies than the US in this respect; when one wants to die peacefully, can one just say so and move on?
Wednesday, February 1, 2012
Saturday, January 28, 2012
Growing up trilingual deprecated (in Germany)
I just learnt from an acquaintance who's bringing up her 5 year old boy trilingual (Hindi, English, German) that the speech therapist he goes to has told her that she made a mistake to bring up her son speaking three languages, because "three is too much." These speech therapists are supposed to have gone through rigorous training before they are allowed to go out into the real world to improve, I mean, screw up, people's lives. This is a very practical profession with very real consequences for the real world. How could such uninformed ideas enter this specialist profession?
In the meantime, the mother is thinking of weaning her son off of Hindi, "because it's useless in Germany" (said the German speech therapist).
This reminds me of a recent German reviewer of one of my research projects that I submitted to the DFG (the proposal was rejected, and despite DFG's loud proclamations that they always send reasons for rejections, and completely contrary to anything I've ever seen in the case of the NSF, I never received a single sentence explaining why the project was rejected). This reviewer had a major objection to the project (as far as he expressed it to me): why are you working on Hindi? Why Hindi? Why not some other language more relevant to Germany, like Turkish?
Another time, a reviewer of an experiment involving German we submitted to the CUNY sentence processing conference in the US. The reviewer asked: why are you working on German, why not English? (To which my co-author replied: Because English is a bastardized version of German.)
And an Indian student of mine once went to a German high school to talk about her research on Hindi, and the school teacher asked, why should our tax money pay for work on Hindi? Why indeed.
It's as if any language other than the one right in front of you is irrelevant, and maybe (if these speech therapists are to be believed) even dangerous.
In the meantime, the mother is thinking of weaning her son off of Hindi, "because it's useless in Germany" (said the German speech therapist).
This reminds me of a recent German reviewer of one of my research projects that I submitted to the DFG (the proposal was rejected, and despite DFG's loud proclamations that they always send reasons for rejections, and completely contrary to anything I've ever seen in the case of the NSF, I never received a single sentence explaining why the project was rejected). This reviewer had a major objection to the project (as far as he expressed it to me): why are you working on Hindi? Why Hindi? Why not some other language more relevant to Germany, like Turkish?
Another time, a reviewer of an experiment involving German we submitted to the CUNY sentence processing conference in the US. The reviewer asked: why are you working on German, why not English? (To which my co-author replied: Because English is a bastardized version of German.)
And an Indian student of mine once went to a German high school to talk about her research on Hindi, and the school teacher asked, why should our tax money pay for work on Hindi? Why indeed.
It's as if any language other than the one right in front of you is irrelevant, and maybe (if these speech therapists are to be believed) even dangerous.
Tuesday, January 24, 2012
Dialysis: month 3
The list of things to carry with me to dialysis is growing fast:
1. Extreme Isolation headphones (to block out the sound of all the TVs, the loud conversations, the dialysis machines themselves).
2. Custom ear plugs to use in addition to 1 above.
3. Laptop.
4. Adaptor for laptop (using R for four hours will cause the battery to run out).
5. Backup reading material.
6. Slippers and pajamas.
7. Book holder to keep notes upright while typing.
8. Portable reading light to read by, since they turn all the lights off.
9. A shawl to cover my shoulders when they open the windows to get some fresh air in.
10. Some writing material.
That is a lot of stuff; I have had to make a checklist before I leave for dialysis.
I'm going to have to buy a new, bigger bag. I just got done buying a specialist bag from x-over, which is the only bag I ever found that slings over the left shoulder (I can't use my right shoulder to carry bags, because of my shunt).
I have also learnt how to avoid bloodbaths when compressing my shunt after they remove the needles. I frequently miss the site of the needle when they pull it out, which leads to blood everywhere (yes, it was a real shock the first time round---blood gushes out of the shunt like from a fire hose). But I've become better at guessing where the site is. It seems I'm the only one who screws up the compresses, nobody else ever has an accident. I guess they're veterans.
Dialysis is, so far, not so bad. What's annoying is the lack of basic lighting and the lack of a basic surface that one can work on. The table they provide is for eating--it has ridges on the sides, making it impossible to type with the computer on the table. There is one directed light just above the bed, but just behind the head of the bed, so I get nearly zero light. There's a reading lamp to compensate for this, but the lamp's arm is too short, so I cannot get it near a book I'm reading. There are really only two ways to read: with a portable reading lamp (not as easy as they make it look in ads), or on the computer. As a result, amazon's Kindle books are making a killing thanks to my new status.
1. Extreme Isolation headphones (to block out the sound of all the TVs, the loud conversations, the dialysis machines themselves).
2. Custom ear plugs to use in addition to 1 above.
3. Laptop.
4. Adaptor for laptop (using R for four hours will cause the battery to run out).
5. Backup reading material.
6. Slippers and pajamas.
7. Book holder to keep notes upright while typing.
8. Portable reading light to read by, since they turn all the lights off.
9. A shawl to cover my shoulders when they open the windows to get some fresh air in.
10. Some writing material.
That is a lot of stuff; I have had to make a checklist before I leave for dialysis.
I'm going to have to buy a new, bigger bag. I just got done buying a specialist bag from x-over, which is the only bag I ever found that slings over the left shoulder (I can't use my right shoulder to carry bags, because of my shunt).
I have also learnt how to avoid bloodbaths when compressing my shunt after they remove the needles. I frequently miss the site of the needle when they pull it out, which leads to blood everywhere (yes, it was a real shock the first time round---blood gushes out of the shunt like from a fire hose). But I've become better at guessing where the site is. It seems I'm the only one who screws up the compresses, nobody else ever has an accident. I guess they're veterans.
Dialysis is, so far, not so bad. What's annoying is the lack of basic lighting and the lack of a basic surface that one can work on. The table they provide is for eating--it has ridges on the sides, making it impossible to type with the computer on the table. There is one directed light just above the bed, but just behind the head of the bed, so I get nearly zero light. There's a reading lamp to compensate for this, but the lamp's arm is too short, so I cannot get it near a book I'm reading. There are really only two ways to read: with a portable reading lamp (not as easy as they make it look in ads), or on the computer. As a result, amazon's Kindle books are making a killing thanks to my new status.
Wednesday, December 28, 2011
How not to sell stuff
So I went to a "Bioladen" near my apartment to buy decaf coffee that's made using a better process than "standard" decaf; also, this coffee is Fair Trade coffee, so I decided I will support them by buying their coffee even though it is more expensive than the standard stuff. But that coffee's not in the shop. I ask the lady at the counter if she can order it for me, and she says, sure, let me take a look. She looks in her secret book (she will not allow me to look with her) and offers me a Fair Trade coffee, but (and here is the big but) I have to buy 12 packets of 250 g each. I cannot order two or three. So I leave, and order the same coffee over the GEPA website.
With a service attitude like that, how long can this shop last? This level of non-accommodation of a customer is the norm in Germany; it happens all the time, with variations, when I go shopping.
With a service attitude like that, how long can this shop last? This level of non-accommodation of a customer is the norm in Germany; it happens all the time, with variations, when I go shopping.
Thursday, December 8, 2011
Wait Gain
One of my doctors told me the other day that I need to gain as much weight, and force myself to eat even if I don't want to, because the dialysis removes lots of amino acids from my blood (cool fact: every 15 minutes my whole 5 liters of blood is passed, bit by bit, through the dialysis machine, or more precisely, the artificial kidney). This can mean only one thing: I would become fat. I can exercise only so much in a week, and I am not supposed to lift heavy weights (so no serious weight training allowed). Clearly, I don't want to become fat; think of all the clothers that would have to be replaced.
Anyway, turns out it was a misunderstanding, as another doctor informed me later on. The first doctor was assuming I'd lost a lot of weight in the course of arriving at kidney failure. But this is not true; I've been at 60 kilos (plus or minus 2) for 27 years. So I get to stay at 60 kg or so.
Anyway, turns out it was a misunderstanding, as another doctor informed me later on. The first doctor was assuming I'd lost a lot of weight in the course of arriving at kidney failure. But this is not true; I've been at 60 kilos (plus or minus 2) for 27 years. So I get to stay at 60 kg or so.
Sunday, December 4, 2011
Transplant waiting lists
An interesting thing I learnt last Friday during dialysis was the distribution statistics for transplant waiting times. The average waiting time is supposed to be about 5 years (source: a Charite informational meeting in 2010), but no source I ever found reveals distribution characteristics. The doctor on Friday told me the answer: it's a uniform distribution ranging from almost immediately after starting dialysis to 10 years or so. Also, there is no data I ever found that tells you average waiting times by age group (I assume age matters).
So I could be waiting for a kidney for no time or ten years. Given that average survival for cadaver transplants is about 10 years (probably an oversimplification), the optimal outcome would be 10 years of dialysis and 10 years of a transplanted kidney. That would cover my entire remaining working life. One other reason to wait another 10 years for a transplant is that it's already possible to grow kidneys custom-built for a specific person. They just don't get big enough to be useful, yet. Who knows what'll be possible in 10 years? See this post on tissue engineering. It makes sense to wait; a custom-built kidney from my own cells would apparently need no immune suppression, which is the big downside with getting a transplant.
So I could be waiting for a kidney for no time or ten years. Given that average survival for cadaver transplants is about 10 years (probably an oversimplification), the optimal outcome would be 10 years of dialysis and 10 years of a transplanted kidney. That would cover my entire remaining working life. One other reason to wait another 10 years for a transplant is that it's already possible to grow kidneys custom-built for a specific person. They just don't get big enough to be useful, yet. Who knows what'll be possible in 10 years? See this post on tissue engineering. It makes sense to wait; a custom-built kidney from my own cells would apparently need no immune suppression, which is the big downside with getting a transplant.
Wednesday, November 30, 2011
Dialysis week 4
Things are finally beginning to improve a bit. I'm getting used to it for one thing. But more importantly, I'm actually feeling better; in fact, I haven't felt this well for a few years now. The doctors have been telling me I'll start to feel "great"; I was skeptical when I heard that, but it sounds more and more plausible that dialysis can actually make you feel better. The last four weeks, I've only felt exhausted the day after dialysis, and (paradoxically) couldn't really sleep much. All known side effects of dialysis, apparently.
Another great plus is that I convinced the sister to let me work on my computer while being dialyzed (initially they refused to let me use my right arm because it has needles stuck into it). This is a great alternative to reading a book or writing on paper, which is what I've been doing. The thing with sitting on a bed with one hand essentially immobilized is that it's hard to (a) hold a book (try holding a book up, however light, for four hours), and (b) hard to write---there is a food tray on a trolley they provide as a writing/reading surface, and it's not easy writing in a tray (in fact, it making writing painful, since your lower arm is being cut into by the edge of the tray). Basically, nobody has put much thought into providing a workspace for a dialysis patient getting dialyzed. There's a good reason for that: almost every other patient in the dialysis center is watching TV *for four straight hours*. (Can you imagine what it would do to your mind if you spent 13 hours a week watching ridiculous programs about how so-and-so's girlfriend stole someone's best friend's sister's boyfriend.) Just looking at the usage patterns, it makes no sense at all to think about a work space for dialysis patients.
So I carry a book holder, one of those things that holds up a book for you. That works. I still have to work out how to hold up a notebook to write on. The laptop solves many of these problems; the screen holds itself up, and the keyboard is right there where it's supposed to be. Absolutely perfect. All I have to do is make sure I don't move my right arm too much, else the needles move around inside the veins, and I am told that's super painful (I am very careful).
Another great plus is that I convinced the sister to let me work on my computer while being dialyzed (initially they refused to let me use my right arm because it has needles stuck into it). This is a great alternative to reading a book or writing on paper, which is what I've been doing. The thing with sitting on a bed with one hand essentially immobilized is that it's hard to (a) hold a book (try holding a book up, however light, for four hours), and (b) hard to write---there is a food tray on a trolley they provide as a writing/reading surface, and it's not easy writing in a tray (in fact, it making writing painful, since your lower arm is being cut into by the edge of the tray). Basically, nobody has put much thought into providing a workspace for a dialysis patient getting dialyzed. There's a good reason for that: almost every other patient in the dialysis center is watching TV *for four straight hours*. (Can you imagine what it would do to your mind if you spent 13 hours a week watching ridiculous programs about how so-and-so's girlfriend stole someone's best friend's sister's boyfriend.) Just looking at the usage patterns, it makes no sense at all to think about a work space for dialysis patients.
So I carry a book holder, one of those things that holds up a book for you. That works. I still have to work out how to hold up a notebook to write on. The laptop solves many of these problems; the screen holds itself up, and the keyboard is right there where it's supposed to be. Absolutely perfect. All I have to do is make sure I don't move my right arm too much, else the needles move around inside the veins, and I am told that's super painful (I am very careful).
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