Note to my readers - the following post and all others prior to 02/15/2008 are creations from my memory of events and represent what actually happened at that time:
First – the good news, we survived and I am feeling much better, almost my old (young) self! Second – the bad news, well. . . to be honest, there really isn’t any bad news!
Have we had any problems? Of course, but none that couldn’t be resolved with some thought or a phone call. The technicians have been to our house 4 times, each time to correct something that was not assembled right when the dialysis machine was first put together (I am the first user of this unit). My feedback to the home dialysis program people centered on never giving a brand new machine to a brand new user again!
I have been able to roll around in bed without problem (a major concern considering all the alarms I used to get in the clinic just by shifting in the seat). I attribute this to Susan’s taping down the blood line to my arm vary securely, and to the brainwave I had while in training at the hospital.
We drove by a scuba diving shop on the way home and I asked Susan to go back and stop there. I went in and asked if they had any used dive suits that were cheap. The owner asked exactly what I wanted and I told him that I was starting dialysis at home and would have a number of plastic tubing hoses and electrical monitoring wires running down my arm. I thought that a neoprene sleeve from a dive suit, worn on top of these hoses would immobilize them and protect them at night when I moved in the bed from getting caught on anything.
He went into the back and came out with an old suit and a pair of scissors. He cut off about 10 inches from the end of a sleeve and had me try it on – it fit perfectly! “No charge” he said. “It’s an old suit that I keep to cut patches from.”
Ever since, I’ve been wearing it, both at the hospital for our last few training sessions, and at home for my runs here. According to the nurses, most patients experience a number of alarms most evenings. I experience few alarms and often none during an 8 hour run. Maybe I should patent this thing!
Anyway, we have had to shorten a few runs because of a power outage, a conductivity error that just wouldn’t go away or because of a machine problem that required a visit from the technician. I am on 6 nights a week from until . I no longer take my blood pressure pills or my Lasix. My color is returning to a pre-kidney disease shade, I take between 2 and 3 kg. a night off, and I am drinking as much as I care to – even a few beers earlier this week.
If this keeps up, I may just be able to live with dialysis, instead of just surviving.