Friday, July 3, 2020

Yeah 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.

Wednesday, April 8, 2020

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.

Saturday, March 28, 2020

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.

Thursday, March 7, 2019

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.


Sunday, November 11, 2018

Year 8 of dialysis, 0 to 6 more to go

Today is the start of the 8th year of dialysis. 2018 has also been an eventful year. First, I broke my left wrist in a bicycle accident and ended up getting an operating to put a T-plate on the broken bone. That was a big drama that took away five days of my life, stuck in hospital, and just before the start of AMLaP right here in Berlin.  The broken wrist meant I could not do night dialysis any more (because I have to press the holes in my shunt with my fingers once the needles are pulled out, and in the night clinic the patient has to do this him/herself, as the nurses are on a tight schedule and can't assist), and had to do day-time dialysis (Mon-Wed-Fri) in the regular clinic rather than in the night clinic. This was a horrible experience in itself, because I had to put up with other patients, who are usually total assholes. For example, one guy (Turkish, Arab, not sure) would play music on his phone without headphones, so everyone else has to hear his crap. I told him to stop it, and he turns to me and says in broken German, "What the fuck is your problem? Why don't you go and dialyze somewhere else if this bothers you?"  That's the typical dialysis patient for you here in Berlin. The city attracts total jerks.

Then, because I could not press my shunt after the needles were removed, they used a kind of tight bandage to stop the bleeding. This in turn led to a shunt failure. I noticed one night at midnight that my shunt did not exhibit any "thrill" any more---this is a characteristic whoosh-whoosh sound that you can even feel by putting a finger lightly on the shunt. I had to pack my bags immediately and go to emergency. I spent the whole night there awake and freezing, waiting to be assigned a bed, and then they operated on me around 11AM the next day. So that was dramar number two. I can't remember how many days I spent in hospital this time, but it was a long time. It wasn't fun enduring a patient in the same room as me who watched TV all night.

Then I finally got out of hospital, and am back to nearly normal life, with (thankfully) night dialysis back on the table. The transplant looks like it's still far away. The doctors say I am still somewhere between 0 and 6 years away from getting a kidney. Waiting times are getting longer and longer in Germany because almost nobody is willing to be an organ donor, and the government is unwilling or unable to change the law to a default opt-in for organ donation.  So, situation normal, all messed up.

Wednesday, December 20, 2017

Year 7 of dialysis, four more to go

On November 11 2017 I started the seventh year of dialysis. This last year has been a complete mess. Four shunt operations in the last 12 months have left my shunt pretty much at the end of its life.

The shunt still works, but I have a very narrow band of skin left that is still puncturable, and I have to keep inserting the needle from further and further away, which means piercing fresh skin (very painful, especially when I hit a bundle of nerves). This will go on for another two years now. To make matters worse, the current shunt is showing signs of weakness, which means I have to go see the surgeon again, which means I might again end up on the operating table.

Maybe I should bite the bullet and get a new shunt; the only downside is that at least currently I plan to get transplanted when my time comes on the waiting list. It seems like a waste to get a shunt now. So my best hope is that my shunt just keeps working another four years. If it fails, I will have to get an emergency catheter and then a new shunt. Let the chips fall where they may.

Dialysis itself seems tolerable; I could go on like this till the end of my life. There are nights with serious pain (when I hit a nerve) but in general, life could be a lot worse. And despite all my complaints about Germany, health care here is the best, one couldn't ask for more. I really dodged a bullet moving out of India when I did.