Year 12 of Dialysis

 I think that November 11 was the start of my twelfth year of dialysis. I've been back on hemodialysis during the afternoon shift, since April 2021 or so.  I have a new shunt on my left arm, I hope it keeps functioning without problems for the next year. I've become completely paranoid about listening for the distinctive "bruit" of the shunt.

The doctors keep telling me I am high on the list for a transplant, but no transplant seems to be in sight. I guess this has to do with the ongoing pandemic. So I've hunkered down and started to try to get through another long period of hemodialysis. So far, the side-effects of dialysis have been minimal: some loss of sensation in the chest, the development of breasts like a woman (just the left side!). Things could be a lot worse I guess.

The critical thing is to stay fit. I have a stationary bike at home and I do a lot of cycling, walking, Qi Gong, Tai Chi, and a bit of Shaolin Kung Fu. This combination seems to be good enough for keeping me reasonably fit.  I gave up the gym in 2020, and never looked back. I find that as far as building up muscle strength in my legs goes, Qi Gong is surprisingly helpful, especially Shaolin Qi Gong.

Year 11 of dialysis

 Year 11 of dialysis began on 11th Nov 2020. The last time I blogged about my dialysis, I had just switched to peritoneal dialysis. That was June 2020 or so. Things haven't worked out well with peritoneal. For one thing, I've lost sensation on my skin, a result of nerve damage following insufficiently effective dialysis (due to the peritoneal dialysis not working as well as it should or could). I can't feel anything on the skin near my solar phlexus, and along both trapezoid muscles. Also, my left foot's sole has gone numb, and the right foot's sole is starting to go number too.  Another thing that happened was this unexplained pain in the upper abdomen. The doctors did a lot of tests but found nothing.  The pain is simply there, and the only solution doctors have offered is strong opiods to kill the pain.  They seem completely uninterested in finding out why the pain occurs at all; in fact, my doctor  told me that he thinks the pain is psychological and that I don't really want to do peritoneal dialysis. Another problem is this feeling of fullness in the stomach, which is either also psychological or has some physiological basis, but the doctors are not really interested in why I have this problem.

The  doctor advised me to switch to hemodialysis, which of course requires a new dialysis shunt, this time on my left arm because the right arm has been used up (too many operations). So last week, I had the shunt operation.I will now have to wait six weeks before the shunt is mature enough to work. Until then, I have to just put up with the  pain and the feeling of fullness. A pretty unpleasant thing to be stuck with.

Initially, the idea was to keep me on peritoneal until I get a transplant. But now I will switch to hemo and wait for a transplant that way. The wait is expected to be another two years at least. Let's hope this second round with hemo is not as horrible as the first.

Statistical Methods for Linguistics and Psychology: Opening

Year 9 of dialysis: Transition to peritoneal dialysis

The last few months (March-July 2020) have been pretty life-changing for my dialysis regime.  In the beginning of March, the surgeons decided to operate on my shunt in order to fix a narrowing of the artery; the danger was that the shunt would shut down. One problem solved, but a new problem created. A couple of weeks after the operation, I developed a high fever and shivering. Because it's corona time, I am immediately quarantined for a week until the test results show a negative result. They never figured out what the infection was, but they gave me antibiotics anyway, and the  fever went down. Two weeks in hospital, and they send me home, continuing to give me antibiotics for three more weeks. Then they stop the antibiotics.

Three weeks pass, and then again I suddenly develop high fever (40 degrees celsius) and shivering. It's a Sunday evening, no doctor is reachable.  I just call the surgeon's number just out of desperation...and the head surgeon is sitting in his office on a Sunday evening, so he picks up the phone. I explain what's happening, and he tells me to call 112. I call them (for the first time in my life), and two firemen arrive home. They do some basic tests and decide I might have coronavirus (again). So an ambulance is arranged (the firemen came in an ambulance, but they are apparently not allowed to take me to hospital, they were more like a medical team) and I am brought to my usual hospital, where I always end up.

This time, I spent four or so weeks in hospital (it's all a haze, difficult to reconstruct). The first week was just in isolation, just eliminating corona, and then the remaining weeks they spent trying to figure out what was wrong with me. Eventually, after a very laborious PET scan (had to be driven to another hospital for it), they figured out that my shunt was infected. Shunt must be removed immediately---major operation. Because this ended all possibilities of doing hemodialysis, they installed an emergency catheter in my neck for continuing with dialysis. This was only a temporary solution; either they would need to build a new shunt on my left arm (the right arm is "used up") or do something else.

The doctors decided to switch me to peritoneal dialysis. The reasoning is that my left arm is the last resort for hemodialysis, and they want to wait till I am much older before they use my left arm. For the next years, I have to manage some other way.

Peritoneal is a very weird kind of dialysis: a tube is installed permanently in your abdomen (peritoneal cavity), and you put in 1.5 liters to 2 liters of fluid into the cavity four times a day, including overnight. The tube installation was done in another major operation (general anesthesia), and since late June I have switched completely to peritoneal dialysis. I have been doing it for a week now. The results are kind of mixed. The plus side is I never have to go anywhere to do dialysis; I can do it all at home or in office, just using gravity. I also feel much better overall; no fatigue from hemodialysis, a much more stable day. The negative side is I lose some 2-3 hours daily doing the procedure, which involves removing the fluid from the abdomen and putting in new fluid.  Also, I am having trouble removing fluid from the body, but this is probably because it is early days and it's not clear yet which combination of solution concentrations to use. I'm hoping this will work out.

Overall, this period from March to June has been truly hellish. The hospital was in corona-chaos both times, and I was kept in the suspected-corona-ward for a full two weeks. The patients I had to share the room with...the less said about them the better. No visitors were allowed, so I couldn't see my wife (she did visit me a couple of times, we took a short walk outside in a park). Even one whole month out from hospital I am struggling to pull myself together.

I really hope this is over now and I can stay out of hospital.

The most depressing thing about living in Germany

What bothers me most about living in Germany is the Rücksichtslosigkeit, the lack of concern that one is inconveniencing others, that is deeply embedded in the culture. For example, these days I have to do dialysis in a big center, with five other patients in the room. Some of these people are sleeping (it's exhausting to do dialysis). And yet, one person is happily chatting, loudly, on their phone; this has been going on for at least 40 minutes now. They just don't care how it affects the others. This behavior is not unique to Germany; but it is in stark contrast to the normal behavior in Japan. I have dialyzed many times in Kyoto and Tokyo, and not once has it happened that anyone would behave in such a manner. It's just unthinkable. I think it's this day-to-day consideration for the other that I miss most about Japan. There's much to like about Germany compared to Japan, and really on balance, I can't imagine living in Japan any more, not permanently. The quality of life in Germany is simply much better. But this aspect of German life really bothers me, and it's a mystery why nobody cares how others are affected. This kind of attitude spreads to everything, car drivers, cyclists, people in the subway, even pedestrians. It just makes life just a bit more miserable than it already is, and unnecessarily so.

Why I quit twitter

Yesterday I deactivated my twitter account. I think that in 30 days from now, the account will be deleted (or so it says on the twitter settings page, I hope they are not lying).
I have been toying with deleting twitter for a long time. For a while twitter was very interesting. I also met a lot of interesting people, whom I then met in real life. I was also able to reach a wide audience for stats related papers, and for my students' research papers. If there were a twitter replacement for posting scientific papers, I would sign up. I guess google scholar notifications do that job, and blogs. I will post more on my blogs from now on.
So there is a lot of positive stuff to say about twitter, but there always was so much noise, even if one only follows stats-twitter. One also encountered a lot of truly crazy people. But what tipped me over was the recent crisis. This crisis resulted in everyone becoming an infectious diseases expert, posting advice and "useful" graphical summaries. Another weird thing that happened was that people started to whine. Their perfect lives had been ever so slightly disrupted. They couldn't do their Caribbean vacation, they couldn't go have a beer with their friends, they couldn't meet their relatives. Meanwhile there are people out there with serious life-threatening problems. This whole lot of people were just so...revolting. I decided to socially isolate myself from them. I even knew some of them well and liked them, but I realized I don't need to know how weak these people are mentally, and how spoilt they are by the luxury of good health and a basically normal life.
Discovering how much people are going to start whining if they experience even the slightest inconvenience is a bit like when you have known a friend for a long time, and you then suddenly discover something really unpleasant about them. Twitter delivers that kind of information about people, especially during this time.
Perhaps deleting twitter will give me a chance to re-set my life and develop a more inward-looking life, without any outside noise. I will continue to post cat pictures in my google photos album. I I will link to it from my home page. Because my cats deserve a wider audience; they are so wonderful.

A new kind of dialysis hell

I think it's fair to say that modern hemodialysis in Germany generally allows for a fairly normal life. I go for night dialysis, I sleep comfortably in a hospital three nights a week with two needles stuck in my dialysis shunt all night, and then I am woken up at 5:15AM and disconnected from the machine. I'm usually home by 7AM. Occasional drama occurs when my shunt starts to bleed after the needles are removed, but even this is fairly controllable, if a bit messy.

But no more. Now I've entered such an endless, dialysis-induced hell that I sometimes feel that I am getting payback for some old crimes from a previous life, like in Hindu karmic theory.

It all began in January 2019, with me coming home on a Saturday morning from a dialysis session. I lay down to rest at 8AM or so (I tend to sleep a few hours to recover from the night dialysis; dialysis is exhausting even if you sleep through it). Then I woke up at 10:30AM, I reflexively touch my dialysis shunt to feel for a pulse and the characteristic bruit or thrill, the whoosh-whoosh of the shunt under the skin.  Normally, I can just feel the thrill by putting my finger over the shunt. Now, there's nothing. I pick up the stethoscope to check, maybe the pulse is weaker today and so the bruit can be heard but not felt with the fingers. Nothing. Shunt has shut down again. So I pack my bags and rush to emergency. When you rush to emergency for a shunt shutdown they take their time to process you, in my case some six hours. Finally, in the evening of that Saturday, they operated on me. It was a painful operation, with local anesthesia, but it was over in an hour. The surgeon says to me, this time you'll last out at least a year.  Great, I think, I hope you're right.

Two or three days later I develop a high fever (40 degrees C), shivering. This fever develops suddenly  during the night dialysis, so  I'm directly sent to emergency at 5:45AM. They again take their time to process me, and then eventually admit me to one of the nephrology wards. Twelve days pass in hospital, the long duration is just so they can give me an antibiotic intravenously. Proteus milabilis bacteria in the blood---a sepsis has developed. The cause is unknown; how can bacteria, that normally benignly live in the intestine, end up in the bloodstream?  After a lot of tests (heart ultrasound, full body CT scan), the doctors take a guess: it's my father's kidney and it's infected. This guess is based on elimination; they couldn't find a focus for the infection so they came up with the only plausible thing they could think of. My father's transplanted kidney is lying a bit to the right of my belly button and has been non-functional since 2011. So the head doctor instructs me to get the kidney removed as soon as possible. I get out of hospital and organize the kidney removal operation at Charite-Virchow hospital, where I am scheduled to, some day, get a transplant. I contact the transplant team there, and they set me up with the head of transplant surgery. The head surgeon gives me 1st/2nd April as the date for the operation, which has various names like explantation and nephrectomy of the Transplantatniere (learnt a new word, the German for transplanted kidney). So I thought, OK, at least we know what happened and things are back to normal. But no.

A few days later, I notice a "boil" on my shunt. It's like a soft skin bubble with a reddishness on it. Doesn't look good. I go for my regular night dialysis where I see the doctor once a week. He takes a look, and says, oh they forgot to remove a stitch. He removes it. Just keep an eye on that boil he says; cover it up with tape and let me know next week if it isn't gone. So a week goes by with this boil implacably sitting on my shunt, not changing. The next week I show it to the doctor (a different doctor, they keep rotating), he says the same thing, keep an eye on it. Now, I've had this boil on my shunt for 10 days. By chance, I have a follow up appointment in the shunt surgeon's appointment the next day. The surgeon looks at the boil for all of one second and says, "The shunt's infected, I have to operate right away.   Get ready, because this is a big operation; I will cut out that part of the shunt entirely and we have to do it under full anesthesia this time". Then he says: "this time, after the operation, your shunt could suddenly start bleeding. Do you know how to stop a shunt from bleeding?" I say no. He says, "just press down real hard on the artery, it'll stop the blood flow completely." Great. Learning a new skill in real time.
 
So what I thought was a casual follow-up visit to the surgeon lands me immediately in emergency again. This time things go fast, the anesthetist comes in to tell me all the different things that can go wrong in the next hours. I'm like whatever, it's not like I have a choice here. The operation itself lasts some two hours and I find myself lying, groggy, in a recovery room. The surgeon quickly walks in and tells me what he did, but I am so dazed I am not sure if I dreamt it or if he really was there, and I don't even know which surgeon talked to me.  I know now that they cut out 5 cm of my shunt, which was in fact infected with proteus mirabilis, and replaced it with a "transplant" tubing made of some kind of implantable material. There are huge swaths of tape coated in blood all over my upper arm, lots of cutting has taken place.  So I lie in the room throwing up periodically (side effect of the anesthesia). There's a slow bleed in the shunt but it looks like the normal postoperative seepage, there's even a drainage pipe coming out of the shunt to draw out the blood, like they have in bigger operations. It's being collected in a bottle.  

Some hours later, the nurse comes in and says, "hey, we are moving you to a room with two other people. I should warn you though that it's going to be unpleasant." Then she smiles and winks at me. I say, unpleasant how? "Wir lassen uns ueberraschen", says she, again with a smile. Let it be a surprise. At this moment I realize why the Germans just had to invent the word Schadenfreude. It's an integral part of the culture. They simply enjoy watching others suffer, it's part of the fun of being alive.

 And a surprise it is. I am wheeled into a room with two nearly dead old men. Both are in nappies and both are unconscious. As I learn in the next days, one of them has some kind of fecal bag coming out of his stomach, which periodically leaks after it gets overfull, and has to be changed. Thus I enter into a hellish new period of my dialysis-induced problems, spending time in this room. It smells so horrible here amid the shit and the piss and the shadow of impending death that I step out and get myself a couple of face masks and keep one on all the time. Up until this time I am still holding up, trying my best to keep calm and get through this. I get one single-needle dialysis on Friday and I spend the weekend sleeping and in recovery, with a hugely swollen right arm.

But then, the next Monday, they take me for dialysis within the hospital. This is a different dialysis center than my usual night dialysis place, but in the same hospital. The male nurse who is assigned to stick the needles into my arm decides unilaterally that if he sticks the needle deep enough into my arm, he'll get to the shunt magically, ignoring me completely when I say that no, the shunt is right under the skin. So he pierces my shunt through and through and goes deep into my muscle in the arm, and I am crying out loudly in pain and asking him---actually, begging him---to stop. I tell him, you've punctured right through the shunt, stop pushing the needle in. His response: "Herr Vasishth, bitte." He thinks I'm engaged in theatrics and drama. One other nurse watching us is actually laughing at the sight of me crying (I mean, I am weeping at this point, with tears streaming down my face); she thinks I'm just over-dramatizing the whole thing. Eventually, I tell the male nurse, just pull out the needle, I will put it in myself. That is enough motivation for him (he doesn't have to do any more work any more), and he finally pulls out this needle that is causing such excruciating pain. I get a new needle from him and stick it into the shunt within about two seconds, without incident. If he had listened to me when I told him where to insert the needle, he would have managed it too. All the nurses around me are now silent and nobody is laughing any more. They don't see many patients puncture their own shunts in this dialysis center because most patients are very old and very sick here.  I guess they are embarrassed that I could do something the male nurse struggled and failed to do a few minutes ago, professional nurse that he is. Anyway, now I am bawling like a baby because the pain is still very intense from the failed needle insertion. They bring me some pain medication to shut me up with my theatrics. And that's the end of that episode.

But this disastrous dialysis episode really left me shaken. First having to share a room with such sick people, then this. It was all too much sensory overload for me. I am anyway oversensitive to smells, sounds, light, pain. I just couldn't take this any more and needed some reduction in stress. So I ask my ward head nurse (the one who wanted to surprise me) to please find me another room to move to that is not so horrific as the current one. She says, absolutely not. It is what it is. I go into the visitors room and sit there and cry for a full hour; I just can't take this any more. I considered jumping out of the window, but I'm just on the third floor and if I fall and don't actually die, I'll just make my situation worse. Besides, my wife is about to come over and she would have a hard time finding me if I've jumped out of the window. At one point someone from the kitchen staff walked in and asked me what was wrong. I should have said, Everything is wrong. But I just waved her away. I think news got to the head nurse that I was sitting there just crying silently, because within an hour she has mercy on me and moves me to a more reasonable room. Here's the thing: the head nurse could have said, I'll do my best and get back to you, when I asked her to move me. Because patient throughput is such that statistically, she should be able to find me a more tolerable place to move to. But she did the second thing (other than this Schadenfreude thing) that is typical of Germans: just say no.  Never say, I'll see what I can do.

One week has gone by by this time. Then the head doctor comes over and I ask her, when can I go home. She says, you have to stay another week so we can deliver the antibiotic into your bloodstream. I look so shocked that she says, you know what, we'll send you home tomorrow. You seem like you understand the situation and we can trust you to take the antibiotics yourself at home for the full course. And that's how I escaped from hospital.

I'm still getting nightmares about the male nurse pushing the needle right through my shunt deep into my arm (that's why I am up so early writing this all down to get it out of my system). I have two ugly, angry hematomas in the shunt from all ther internal bleeding he induced with his incompetent needle insertion. I just hope the shunt is not permanently damaged.

I hope this current cycle of problems is now over and that this newly reconstructed shunt now works without problems. I am currently celebrating every 60 minutes that I spend out of hospital. It feels like a miracle just to be able to walk down the street, to make one's own coffee, to eat my wife's delicious food, to kiss my son good morning or good night, to lie in one's own bed, in complete silence with no fecal matter smell in the air. No sounds of people shouting out loudly "Schwester, Schwester" all through the night. It's paradise.

Next hospitalization is on April 1, for the explantation of my father's kidney. It feels strange that a piece of living tissue from my body that belongs to my dead father is now going to be just cut out and thrown away into the garbage like a piece of trash. Somehow I feel I should try to arrange for a cremation of my father's kidney. It accompanied me through the most crucial 25 years of adult life, and this kidney made it possible for me to have a life. But I don't know how to arrange this with the hospital. They will probably think I am insane.