Wednesday, July 10, 2013

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.