As I hit my third year anniversary of being on dialysis this week I also can claim that I've had a month of some of the best sleep of the last 8 years of my life. It has not been a perfect month by any stretch of the imagination. I still vomit stomach acid more mornings than I don't and the mornings following a treatment tend to be the more severe occurrences of that, though no one seems bothered by this other than myself.
For my first two years and up to about 6 weeks ago, having a half a kilogram to one kilogram of fluid taken off during a treatment was typical and just two treatments per week were plenty to keep me running. But since about 6 weeks ago, I've needed 2 to 4 kilograms per treatment and three treatments per week to keep me running. This is a clear sign that my health officially is declining.
With end stage renal disease there's often a "honeymoon" period where the disease is present but not having any significant impact on the overall health of the patient. This typically is a 3 to 6 month period. I've been lucky to get almost three full years of said honeymoon period. But the honeymoon is over.
These days my treatments are for three hours. Last week a technician had accidentally put me on for three and a half hours, and I called them out on it at 3 hours and five minutes. Unfortunately that meant that I officially didn't have the full amount taken off. So I went into my next treatment a little heavier than normal. I asked them to take off a little more than normal but didn't want to push for too much... the more they take... the more intense my head ache experience can be (although my recent headaches have been quite manageable compared to those I was having prior to the increased treatments). Then the weekend came, where I go one day longer without a treatment... and man did I feel it.
I woke up Monday morning with very short breaths as my lungs had filled with fluid. I recognized the feeling from when I had spent the night in the hospital last month. As I tried to do anything active I became weak and incapable of getting much done at all... including a simple walk downtown (three blocks from my house) and a little work in the yard as we attempted to plant some tomatoes. I could watch... but the actual work made me weak and forced me to sit. And on my walk downtown I had to be picked up by car... I couldn't make it home.
I walked across Massachusetts in 2008 and today if my fluid builds up I can't walk 6 blocks.
On Monday they took 4 kilograms off of me. That's almost 9 lbs of fluid and that's after having a treatment only three days earlier. Clearly the honeymoon is over.
My name is Bil... and I have kidney disease.
