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.

Shunt operation number 4

So, the last time (August 2017) the surgeons decided to operate on my shunt because it was becoming too narrow. This operation was successful, but it also had the effect that my shunt volume increased dramatically, a blood flow of 2-3 liters per minute. In the long run this would lead to heart damage, so I requested a shunt narrowing. And that's what this fourth operation was about.

The operation itself ran for two hours, nearly, and was the most painful one I have experienced in the last 6 years. It was again under local anaesthesia (on my request), but this time I could feel all the pricks and cuts and kept crying out in pain, and in response they kept pumping my arm full of anaesthetic (what's the English for lokale Betäubung?), to the point that I lost all sensation in the entire hand for maybe one day.

So the operation was particularly hard this time round. They installed some kind of plastic tubing in the shunt to by-pass the main blood flow (something like that), thereby reducing blood flow. I hope that I can now catch a break in 2018, and can be operation-free for some time at least. The surgeon warned me that my shunt was in its last stages, and in about two years they will have to build a new one. Let's hope the surgeon is wrong and that this shunt will keep going for another four years, the period of time I need to wait before I get a transplant.

I ended up in hospital for a whole week this time, usually it is only two days. This was the most horrible part of the whole experience. My neighbor was a guy who had diabetes, and had lost his eyesight, kidney function, and part of his foot to gangrene---all known consequences of uncontrolled blood sugar in diabetics. What was weird was that he didn't seem to understand that his foot no longer functions, and he kept walking all over the room with his amputated foot, leaving a gruesome trail of blood wherever he went. He still had gangrene in his foot, and I assume more amputations are coming, but he was oblivious to the crisis he was facing. He had lots of sugar with his tea, and all deserts and meals that the hospital offers (disgusting, unhealthy German crud, more on that one day).

The worst part of this experience was not even being in the same room as a guy with gangrene and a bleeding, amputated foot. The worst part came when the doctor sauntered into our room, my fifth day with this guy, and told him: "Congratulations! I have good news! You don't have tuberculosis!"

What would have happened to me if this guy had had tuberculosis? How did I end up in a room with a suspected case of TB?

New shunt operation in the land of the half-assed way of doing things

I just came back home from my third shunt operation of the year (if memory serves). This time they fixed a narrowing of the shunt in my underarm by installing some kind of stent that widens it. One more operation is due, because now too much blood is flowing through the shunt. This time the operation wasn't as painful as the last time round and it seems everything to do with the operation went smoothly. It was over in one hour, with two surgeons operating. As usual I did this with local anaesthesia, but one of the surgeons warned me that they might have to switch to full anaesthesia if they had to go deeper into my body. Thankfully that didn't happen, otherwise I would have been throwing up all over the place after the op.

One thing that continues to annoy me is the sloppy attitude of German medical personnel. A previous time that I was admitted there, the person taking my blood let the bare needle fall on my bed and was about to put it into my arm before I stopped her and asked her to use a new needle.

This time (I think it is the same person, a doctor), the doctor just grabbed some hand disinfectant liquid that's available at the entrance of a room, and dabbed it on a cotton swab, and then dumped the cotton swab face down onto a non-sterile surface, the side table which had just had my lunch on it. Then she cleaned the spot she wanted to draw blood from by using this swab, using the swab's face that had come into contact with the table. In the meantime, she dumped two cotton swabs onto the table, and after drawing the blood bundled them up and put them on the spot on my arm that she had drawn blood from.  She's a doctor, she should know better than to take such a risk by not following protocol. I think it was the same person the previous time as well, I had thought she must be some rookie nurse, but now I think it was this same doctor. What she did was an improvement on another doctor at Charite who, back in 2011 or 2012, didn't even bother to disinfect my arm before sticking a needle in. I had complained about that to my nephrologist back then but my doctor just shrugged and said he knew that doctor at Charite, he had briefly worked for the nephrologist and been fired quickly afterwards from the dialysis center.

I notice this general tendency towards sloppiness in all of German culture; in this respect, Germany shares a lot with India. The way they run their trains (compared to Japan), the way they run their hospitals, telephone companies, universities, everything. Germany is the land of the half-assed approach. Germany does day to day bureaucracy well, but that's about it. They are good at being bureaucrats, they are not good at doing things right.

It is ironic to think that I survived years of dangerous medical care in Delhi, only to end up in an advanced western country where the same careless practices happen as back home in uneducated, underfunded India. It will be very funny if I end up being done in by German medical care, having escaped intact from India, although my wife and child will probably not see the humor in the situation.

Maybe all medical care is like this everywhere. It's hard for me to judge because whenever I go for dialysis to a European country or Japan, or the US, or southern Germany, I find superior adherence to protocol than I see in Berlin. Maybe it's a Berlin thing, perhaps we need a name for it. How about the "geht schon" attitude? I hear that phrase a lot when someone is about to break from protocol.

There is something I can do about this, however. I found out how to register a complaint to the hospital, and I will, and the next time I am going to be an asshole and tell the doctor to stop doing what she is doing and draw blood using the correct disinfection protocol. I was just not ready to confront the doctor this time, but next time I will be mentally prepared. I have to rehearse the language in advance so I don't insult them, but I still get the formal rigour that I want from them.

Shunt operation site.

I have a philosophical objection to falling sick or dying due to a stupid, avoidable error

Back in hospital for a routine shunt angiography, a nurse comes in to draw blood. She takes out the needle from its sheath, and accidentally drops it onto the bed. The exposed needle has now made contact with the surface of the bed, where I have been sitting for 15-20 minutes. What is the correct procedure here? It doesn't take 10 years of medical school to work it out: you replace the needle with a new one. But no.

The nurse proceeds to pick up the needle to put it into my vein. I stop her and ask her if she can use a new needle, and she immediately says, "sure", and replaces it.

What could possibly happen if she had put the needle into my vein? It's possible nothing would happen. As a nurse once casually informed me when I complained about lack of hygiene in a Berlin dialysis center I used to be at, whether one would get an infection in such situations really depends on how many bacteria are entering your body. This may well be true. But, if there is an avoidable source of infection, is it not reasonable to avoid it?

If, instead of nothing happening, I now get an infection that knocks me out for some weeks, or I get an infection that kills me, if all that it takes to avoid that rare event is that the needle be replaced, is it not worth doing it? Clearly, the answer for the nurse was, fuck that, I'm too damn lazy to now go get a new needle that's one meter away from me. For the nurse, it's just another day in the workplace, *she* will go home to her family, *she* will not have to pay any price for her mistake. The risk is all mine to take.

My impression is that German nurses and doctors are especially casual about hygiene in a medical setting. In Japan, the UK, France, Sweden, the US, the standards are much, much higher. There are stringent rules about disinfecting the hands even before one puts on gloves; this is unheard of in Germany. A doctor at a dialysis clinic in Berlin once yelled at me when I mentioned that there was an infection risk if nurses didn't disinfect their hands. Her argument: the clinic has a zero infection rate so the current procedures are adequate, and besides it's not reasonable to require that medical personnel disinfect their hands every time they move from one patient to the next, it's just too much work. The patient must pay the price for this casual attitude.

I have a strong objection to all this: I don't mind dying as a result of an unavoidable situation. The heart can and will eventually fail. A deadly infection that you get by chance that ends your life. An accident on the street ends your life. I can live with all these ways of dying, so to speak. But, on principle, I have a strong objection to having to incur risks just because of situations like a nurse being too sloppy to replace a needle she has dropped on the bed. I understand fully that nobody gives a rat's ass what my position on this important issue is, but here it is, for the record.

Dialysis shunt shut-down

When I first got my dialysis shunt in mid-2011, I received clear instructions on paper to check every day, several times a day, with a stethoscope, that the shunt is still working. When a shunt is working, it has this unmistakable whoosh-whoosh-whoosh sound. The instruction was to go to emergency if I don't hear that sound.

In the beginning, I was rigorous about checking shunt function. After a few years of largely uneventful dialysis, I became complacent. I eventually paid the price for this complacency. Last week on Wednesday night, I went for my regular overnight dialysis, and the nurse came around and got ready to puncture the shunt. Lately I haven't been doing the puncturing myself because I just got operated on for an aneursym and it's now much more difficult to insert the needle myself: due to the operation the shunt has been embedded deeper inside the arm and it takes a lot of force to pierce the needle into the artery and I don't feel confident doing that (yet).

So the nurse simply stuck the needle in... and nothing happened. Normally, when a needle enters the shunt, a gush of fresh red blood appears in the tubing attached to the needle. It pulsates strongly because of the pressure in the shunt. That's how you know you are in. But nothing. Thinking that she had missed the shunt, the nurse moves the needle around under the skin (this is very painful because she has to change the direction of piercing under the skin--the sharp needle must be ripping through the muscle and tissue) and a bit of blood appears, but it's nearly black and not pusating at all. That's when the nurse realized that the shunt was not working.

It seems that my shunt had shut down sometime between Tuesday morning, when I finished my last dialysis and Wednesday evening, and I had no idea when. I had felt some pain and distension in the shunt, but it was consistent with the usual pains associated with the shunt, so I didn't bother to look more closely.  I had gone about my usual work on Tuesday and Wednesday, when I should have been in emergency getting the shunt reopened.

So this is now 10PM and my shunt is down. I have three liters of fluid that have to be removed from my body so dialysis is urgently needed. The nurses then sent me to emergency one floor below (the night dialysis is in a hospital). The nurses there were quick to do an EKG, and blood tests to establish potassium levels. They decided the potassium was too high and gave me a battery of medicines to reduce potassium levels, and stuck me in a hospital room for the night. I've never had a shunt shutdown so this was a terrifying experience for me; I had kind of expected that they'd operate on the shunt immediately that very night, but no. It was some 12 hours later that I was scheduled for an operation.  All this time the shunt is just not working. What's happening to the blood that's stuck in the shunt? It must be festering, because stagnant blood is just like flesh. I have no idea how bad the situation is, so I'm just lying there in the hospital bed the whole night, anxious.

The operation happened around 10:25AM and lasted an hour. I opted for local anaesthetic as always; these operations are really painful but getting general anaesthesia means you pay a price later. I generally throw up a lot and recovery takes longer. It's just too expensive time-wise to get general anaesthesia and I always opt for the more painful but faster option. However, this operation was way more painful than any shunt OP I have had in a while, and I think this was my sixth shunt operation. The thing with pain is that it flows through you and takes over all your ability to feel anything else; you only feel the pain and nothing else impinges on consciousness. In that sense, it's possible to tolerate even high levels of pain, if you treat yourself as an observer. But it was harder this time and eventually I was crying, silently.  Not sobbing or anything, I just had tears streaming down my face. This seemed to upset a nurse passing by much more than it upset me---if crying gives my body an outlet and gives relief, why not? It's a natural reaction. But the nurse felt horrified that I was crying, and came and stood by me and hold my free hand. Strangely, that led to an increased stream of tears. I suppose that any human contact magnifies one's emotional response. Is crying such a rare response on the operating table, I wonder? What do other patients do? Maybe they are all opting for general anaesthesia.  The surgeon asked me if I feeling any pain and I said yes, but I told him to keep going because I could tolerate it. But the other nurse standing by him found that outrageous and said it would be inhuman to make me endure pain and they injected more local anaesthetic into the arm. I don't really understand that. If I can tolerate the pain, in the sense that it doesn't make me cry out loud, it should be OK, no? There's no need for more anaesthetic. But apparently the doctrine in medicine is, no pain whatsoever.

The surgeon was the same one as for the aneurysm; a very competent guy. Within an hour, after much painful cutting and pulling and shearing, he had the shunt working again. I learnt later that my shunt had shut down due to calcium deposits blocking it. They literally used a sucking device to pull out the calcium from the shunt (I could hear it, it sounded like a vacuum cleaner).

So, the shunt is working at 11:30AM on Thursday, and, amazingly, I was dialysed through the shunt at 2PM, right there in the hospital. I thought this was nothing short of miraculous.

The hospital stay lasted four days while I recovered from the operation.  I was put in a room with two other patients. Unfortunately for me, one of the patients had a cough and running nose that eventually proved to be the influenza. This came back to bite me later.

Saturday they sent me home, and told me to get re-admitted to hospital on Tuesday morning to get a follow-up shunt angiography. This involves sticking a large catheter into the shunt and injecting iodine and then watching the flow of the iodine through some kind of x-ray type of machine. They wanted to establish whether the shunt had some dangerous narrow spots. When it does, they can use a balloon catheter to widen it. The angio is not a big operation, but one has to stay overnight in hospital. So I ended up spending Tuesday night in the hospital. By this time, I have a cough and the sniffles as well. The doctor takes one look at me and quickly decides I must have the flu as well because I had been in the same room with the guy with the flu, and puts me into strict isolation in the same room with the guy who has the proven case of the flu! I had a strong feeling that she was wrong about the flu, so I took matters into my own hands. I was stuck in a room with a guy who has the flu, I probably just have a common cold. If I breathe the same air as him (he was coughing non-stop) I would probably get the flu as well. I was inoculated against the flu but it seems the injection failed this year. So my solution was to ask the nurse to give me one of their heavy duty masks that they wear when dealing with infectious patients. She gave me one, it was a massive mask that covers the whole mouth and it's not so easy to breathe through it, but it's not impossible. I spent the whole night lying there with the mask on while my neighbor alternated between snorting, snoring, and coughing right through the night.  I could block out the astonishingly loud sound mostly, through my trusted Bose noise cancelling headphones, but I didn't get much sleep because it was so hard to suck in air. But I wasn't willing to risk getting the flu on top of my cold so I was disciplined enough to hold on. At one point I must have dozed off and in my sleep removed the mask; so I was exposed for I don't know how long.

Anyway, I'm home now and recovering from this harrowing experience. Could I learn something from this?  I think that I could have reduced the shock of having to go to emergency in the middle of the night, and a lot of the attendant unpleasantness if I had continued to be rigorous about checking my shunt's operation two or three times a day as instructed. At least I would have gotten to emergency earlier and would be in control of the situation rather than being buffeted about by the surprise of a shunt shutdown. It seems to help me a lot psychologically if I am being proactive about the problem rather than being pushed ahead by factors out of your control.

The second lesson I learnt is to always have a supply of heavy duty sterile face masks at hand. I am going to order them from the pharmacy later today. The next time I'm in hospital I am going to keep the mask on all the time. I may even use it when traveling on the train to work when the infection season is on (like right now).

PS The ironic end (?) of this story is that I do have the flu. The initial diagnosis was right.  I only learnt this when I called my doctors to tell them that the hospital had given me the wrong dose of Tamiflu to take home. They said: "you have the flu, the hospital just informed us; the hospital should have never let you leave for home".  The strange thing here is nobody thought to call me and tell me this. I have now exposed my son and wife as well to possible infection. I just don't understand how the medical world functions.  My doctors also told me to get a face mask to protect others from getting my infection. So I send my wife to the pharmacy to get the same mask they gave me in hospital, the 3M Aura 1862+. It seems this mask is not for sale to ordinary citizens. Even if one were to order it from the wholesaler, bypassing the usual routes, it would take 10 days! On amazon.de it is available right now however, it costs a whopping 90 Euros for 20 masks. We have asked the pharmacy to get whatever is appropriate for the current situation.