Disadvantages of home hemodialysis

Dialysis websites make a big deal out of the advantages of home dialysis, and indeed there are many: freedom from going to the clinic (just going and coming home takes 2 hours away each time, so 6 hours lost every week), freedom from picking up infections from other patients, freedom from loud and obnoxious patients (of which there are many), freedom from the vagaries of more or less competent/careful/friendly nurses. There's a long list of pluses.

But not much information is available on the disadvantages of home dialysis. Information brochures and websites sanitize the downside. It would be nice to have a summary of the ground reality.  So here it is. Of course, this is only one person's experience.

1. ``Emergency technical support'': Technical support is supposed to be reachable (during working hours of course). Once when I called them due to an urgent problem, the technician told me he doesn't know my machine's inner workings, he'd had to find someone who does. So one hour later I get a call back. That is some emergency response time.

2. The clinic draws my blood every month, but nobody looks at the results! I had several blood values that needed new medication (phosphate binder, iron), but nobody noticed that this needed action, until several *months* later. Basically, once you are away from the clinic, nobody remembers you exist. I think that the solution is to track your own blood report, which is what I am going to do now.

3. There is a frightening book called Command and Control, about the near catastrophes that happened once the US deployed the nuclear option during the cold war years. A central takeaway point from that book is that people never do things by the book, and whenever they diverge from the specifications, there is a disaster. But people never learn. Even smart physicists, supposedly the best kind of person there is out there, are dumb about playing it by the book.  Command and Control provides a lot of examples of just how dumb smart physicists can be.

This is the situation with the technicians who are supposed to maintain the dialysis equipment. I use an osmosis machine that cleans the water that is delivered to the dialysis machine; it has a filter that should be changed every three months. This has not happened, even though I've been chasing the technicians for one month now. They agree that it *should* be changed, but that it's not going to be "dramatic" if it's not changed. However, I keep getting warning messages from the osmosis machine, that it's not self-cleaning properly. The technicians think this is not a big deal. I guess that the reason they think it's not a big deal is that they are not the ones connected to the dialysis machine. One technician actually told me to contact them if the machine breaks down!!! When would the machine actually have a chance to break down? When it's working, i.e., when I am connected to the dialysis machine.

What are these guys thinking I should do? Mid-dialysis, if alarms go off suggesting that the osmosis machine is down, am I supposed to rip out my needles and saunter off into the bathroom to find out what's happening with the osmosis machine? Or should I just call them and relax and wait one hour before someone calls me back?

I finally complained to the doctor, and she forced them to come over to change the filter. The technician tried to convince me it wasn't really necessary, at the same time he told me the filter change is technically overdue. So, basically, you cannot trust the technician to do things right.

4. Someone somewhere decided to change the brand of the tubing that delivers the blood from my body to the machine and back. Nobody apparently tested these to see if they actually work. So now what's happening is that my blood coagulates inside the tubing, and this is due to a design defect with the tubes. The amazing thing is that the clinic nurses knew this was a defect, but nobody bothered to inform me. I found out the hard way. And when I went to the clinic to tell them about the coagulation, they told me, ``Yeah, sure, we know this is a problem. Just increase your heparin dose.'' Someone could have warned me as soon as they found out the problem, but no.

5. There is even more. I am on the transplant waiting list but I need to be re-evaluated every three months to stay on the list. Nobody had bothered to check if this re-evaluation was done (it wasn't).

Basically, the downside of home dialysis, at least for me, is that you are literally on your own when it comes to monitoring your health. You cannot depend on the clinic to check anything, you have to do it yourself. Of course, the catch is that you have to know what to look for. I certainly don't have any idea what I'm supposed to track.

Most of these problems are avoidable; none of these issues would arise if the clinic would do things by the book. When a blood test is done, someone is supposed to look at it. Machines should be maintained as specified in the manuals.

Six months of home dialysis

I've entered the seventh month of doing home dialysis, and it may be useful, as anecdotal evidence, for others in my situation to hear about how it went.

The first four or so months were hard. It is one thing to make a mistake during dialysis setup in the clinic, where someone can come over and help you out. It is another to do it in the solitude of your home.  Learning to deal with smoothly and efficiently with emergencies was the new skill I acquired in these few months.  I made all kinds of mistakes I should not have made: failed to tighten a screw tight enough, causing a major water leak, forgetting to connect the filter (the artificial kidney) with the water supply (it doesn't get more basic than that), missed my artery entirely when inserting the needle, broke the needle while trying to inject Epo into the bloodstream. All these mistakes are avoidable, most of them would be avoided if I stuck to a checklist based methodology.  A checklist is tedious but guaranteed to help you get it all right. My center discourages checklists, on the principle that I must get to know what I'm doing, and let logic be my guide, not mechanical checklists. But Atul Gawande has shown that this idea is wrong. Even experts benefit from checklists.  Some mistakes are inevitable, like breaking a needle or missing a vein. One learns from experience.

Things are stabilizing now, but there are still some pretty dramatic situations I have never dealt with before and was not trained to deal with. Once the blood simply clotted in the system and there was a total shutdown. I just had to abandon my blood in the system (about a glass worth of blood) and disconnect. No explanation as to why it happened, except the maybe Deutsche Bahn defence (the heat). Luckily this happened in center, had it happened at home I would have really been lost.

Is it worth it to dialyse at home? I am not sure. The advantages are flexibility and freedom from having to come into contact with a lot of sometimes very sick people. The disadvantages are extra work for my wife (who also gets tied down at home when I am connected to the machine, because she doesn't like to leave me alone), extra work for me (calculating supplies for the next delivery is tedious, setting up the machine takes a good 30 minutes), and stress when things go wrong. The biggest disadvantage is lack of access to doctors; in the center you see a doctor three times a week. At home, you have to seek out the doctor, who is not always available; so you have even a minor problem, you have to jump through a lot of hoops to see a doctor. I think that if I could have a room to myself in a center I would probably prefer to dialyse there.

Anyhow, on the plus side I have things a little bit more under control than I did six months ago, and I have already managed to survive 25% of my waiting period for a transplant. Six more years of waiting to go.

From The Calculus Gallery

"Newton [...] had a remarkable tolerance for algebraic monotony, [and] seemed able to continue such calculation ad infinitum (almost). But eventually even he was ready to step back, examine the output, and seek a pattern."

Four hundred pages

 I think I have written about 400 pages of funding proposals since 2004, when I started my professorship at Potsdam. A bit less than half of these were funded; the others were summarily rejected, sometimes without any reason.

Was it worth writing all these proposals? It's an interesting question. It was certainly worth it when the money came pouring in; if every proposal I'd written had succeeded, I think I would have said, yes it was worth it. The failures could also have been very informative if they revealed the funding formula---what was missing?

The strange thing with the reviewing process is that it is always possible to find a reason not to fund a proposal. Always, and without exception. I have reviewed a lot of proposals for the German, US, Netherlands, and other countries' funding agencies.  I could have rejected each one of them. I could reject every one of the 70+ papers I have reviewed in my lifetime, without exception. Every single one of these proposals and papers had enough flaws in them that I could shoot down each and every one of them.

So how do some projects get funded and some get trashed? One would think that after writing 200 pages of failed proposals, I would have some insight on what I did wrong.  Amazingly, I have no idea at all. When you submit a proposal, by definition you have a winner---in your opinion. Otherwise why would you waste your time writing it? Once the review and decision comes back, the reviewers usually complain about the proposal having too much work planned in it, or too little, or it's not focused enough, or it's too focused, or it employs too many people or too few, the method used is wrong/not identical to the reviewer's favorite/of unknown efficacy. Reviewers seem to feel impelled to complain, after all it's their job. Most of them seem to think that they are in an American courtroom drama, the author a defence attorney and they the prosecutor---they feel compelled to take an opposing position.

But some proportion of the proposals that go through the same rigmarole get funded. It's tempting to try to analyze post-hoc (once you know the outcome of the review) what might be wrong with the proposal, but this is like trying to guess which way a coin is going to land after you've tossed it. It is a completely useless exercise.

I sometimes meet professors who claim to know what a winning proposal should look like. I believe that they are fooling themselves through post-hoc reasoning. I can imagine that some basic common-sense conditions need to be satisfied. The work should be feasible, the time frame reasonable, the question important important enough to warrant research. But anyone who thinks they can predict what a successful proposal is going to look like only needs to take a cold, hard look at their own funding record, and be crestfallen that they are performing at chance levels. It is literally as if the funding agency tosses a coin. In today's funding world, it is more like rolling a die, with only one winning number.

In retrospect, if I could get my 200 pages of wasted labor back, I could have written 10-15 papers. If I keep writing proposals at the rate that I have done in the past, I will write another 800-1000 pages of proposals in my working life. Of then, less than half those pages will yield research money. We are talking about 500+ pages of pure farting in a puddle. I could write more than 30 papers instead of collecting rejection letters in a folder. It is an enormous waste of taxpayer money. I am being paid to do research, to teach, to help create a new generation of scientists; if I spend my time writing 500 pages that will go nowhere, it seems like an awfully inefficient way to use a limited-time resource that is a professor.

There has to be a better way. Imagine that you get 30,000 Euros a year just to do research, forever, till you retire. Make it 20,000. You have a group of 2-3 people working with you, and a lab assistant. I am willing to bet that, with a team well-chosen, I can outperform my past performance (6 published papers a year over the last two years, with a group of 10-15 people) with this meagre sum.  I would waste no time on trying to get big money. I would spend 100% of my time on what God originally intended professors to do: profess.  6 papers a year by four people is much more efficient than 6 papers a year by 10 people. It saves time and taxpayer money, it gives you total freedom to go wherever you want to go as opposed to the funding agency, and it gives you a chance to do your best work uninterrupted with worrying thoughts about where your next buck is going to come from.

This is an experiment whose time has come.

Growing up

A five and a half year old boy standing shivering outside in the courtyard of my son's school, waiting for his mother to pick him up; it is 4PM. ``Did you see my mother at the station? Sometimes she goes to the bar and forgets to pick me up.''