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.
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.
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1 comment:
:( So sorry to know all that pain.
With all that pain you could still spill humor!! Thank you for sharing!
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