Thursday, January 1, 2015

One year of night dialysis

I'm now in my fourth year of hemodialysis, and 31 years from my first dialyses and transplant back in New Delhi. For one year, 2011-12, I did dialysis in a center in Berlin, but I couldn't handle it---dialysis patients in Germany are by far the most inconsiderate of all, compared to dialysis I have done in Australia, Copenhagen, Japan (Kyoto and Tokyo), Spain (Barcelona), USA. France comes a close second to inconsiderateness. They will watch TV with the volume on their headphones set to maximum, talk loudly to neighbors even if others are sleeping, shout out loud and do all manner of objectionable things.

So, after training for nine months, I switched to home dialysis. I tried it for a year, but that didn't work out either. I documented my experiences here:

Eventually, my doctors got sick of my complaints about the so-called technical support and (diplomatically) kicked me out of the dialysis center by recommending I do night dialysis in a different center. So here I am, one year later, on night dialysis. I have to say I have converged; this is as optimal as I think dialysis will ever get for me. My days are relatively free. I have trained myself to meditate myself to sleep once I am hooked up to the machine, and to not move my shunt arm during the night (it is amazing what you can train your mind to do if you only try). One year later, I am nearly off all my blood pressure medication, and for the first time in my life I am nearly medication free. This is the most normal I have ever been in my 32 years since my kidneys failed.
So I am happy to say that I am now pretty satisfied with my dialysis situation. Night dialysis works for me.

The downsides: There are some disadvantages, however, that I have to learn to live with.

1. Come rain or snow, I have to go to dialysis in the evening, around 8:15PM, when I am dog-tired, and take a one hour trip to the center. And I get done at 5:15AM, which means that I take the train home at 6:00AM and am home by 6:30. Taking the early morning train in Berlin is fraught with danger: there is vomit, there are seriously deranged people about, there are people looking for a fight after a night out drinking. You see the margins of society in full display, and it is not a pretty sight. Statistically, I am pretty sure that one day something bad will happen to me on one of these trains. 

2. I feel much fitter; I can do 165 pushups (in five reps of 30-40 each) and am steadily building up to my goal of 250. But I can't build muscle because it's a losing battle with dialysis; most of the protein gets sucked away by the machine. I have lost 5 kilos since I started dialysis, mostly muscle I had built up during my transplant days. I had built that muscle up with weight training, something I cannot do any more because my shunt arm is not allowed to lift anything more than 10 kgs. So I train with 6 kg weights, and that has almost no effect on muscle size (although my stamina has gone up). I've lost significant muscle mass on my legs. (Have to work on this in 2015, need to find more time to build pure muscular power.)

3. I am still at the mercy of the expertise level of the nurses, and the formal rigor they bring to the table. And the same type of chaos I experienced earlier in patient management continues.  Whether I have a good night or not depends to a great extent on the nurse in charge. If they tape my needles even slightly wrong (hitting the wall of the shunt) I am going to get alarms all night. If they don't remove the air bubbles from the heparin pump, the machine will detect the bubbles eventually and set off alarms, waking me up. I mentioned all this to the doctor, and asked them to set up a checklist to ensure that every detail is checked (this is how they do it in Tokyo: one nurse comes and works through a checklist with the nurse in charge to make sure everything was done right). But I was told that we don't do checklists; the results are there for us to see and for me to experience in all their fullness.

4. Nobody is tracking the slow deterioration of my shunt, except of course for me. I have had two ultrasounds so far on my shunt, and the evidence is clear: the blood flow is decreasing. This means I will soon need a procedure for widening up the shunt. However, no one but me is keeping track of the reduction in blood flow volume.  There just isn't any record of what the results of the first ultrasound were, and no comparison with the second ultrasound; if I didn't have the volumes memorized we would not know that volume went down over the last year.  That has been my experience in Germany. When my shunt was built, it was a major operation with general anesthesia. The last thing I heard before they made me inhale the gas to knock me out was "Where's the patient's checklist?" "We can't find it, it's not in the folder." "OK, we'll do it without." The anesthesiologist (or was it the surgeon? don't remember) also used a ball point pen to make a cross on the arm on which the shunt was to be built. The broader point is that a dialysis patient has to be his own doctor; if you don't get informed and track your own life, you are going to pay a price.

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