(This post could be 100 pages long, frankly. I have a lot of thoughts about the sacrifice I make to be healthy.)
Let’s start by thinking about the human kidney. This is an organ that works 24 hours a day cleaning the blood, regulating the fluid level in the body, etc.
So the assumption is . . . the more dialysis one does the better one will feel.
The traditional in-hospital hemodialysis schedule is three sessions a week for four hours a session. Through science and research this formula was determined.
In my case through the advice of one of my doctors I am trying a schedule of no less than 20 hours of dialysis a week. So eight more hours a week than the traditional schedule. It’s not as good as 24 hours a day, seven days a week, but it’s an improvement from 12 hours.
Let’s look at the time I spend on dialysis in one week:
For the sake of clarity, I will break it down into 5 sessions of four hours each.
Now let’s look at set-up time:
Before I get on the machine it takes me from 45 minutes to an hour to set up my machine.
After I finish my session it takes 15 minutes to wipe my machine down and run the dialysis machine through cleaning cycles. (Some cycles take as long as an hour. The machine runs through cycles without my direct input.)
Ordering and Organizing supplies:
I use supplies from a few medical companies; Baxter and Fresenius. I also get dialysis related supplies from my hospital. I organize, order and inventory boxes of supplies on a monthly basis. Twice a month I also receive shipments from these companies. (Some shipments are so big that I reserve the elevator in my building, like you would during a move.)
Box Break-down and Recycling:
My dialysis fluids come in big plastic jugs and my these jugs and other miscellaneous supplies come in big cardboard boxes. Each day I take on average two jugs and one big box down to the recycling room in my building. There I must break down the boxes and remove all tape and labels.
Thirty hours is a part-time job.
Thirty hours is more than a full day out of seven.
My point . . .
I should start by saying how thankful I am to have the option to do dialysis. This is life-saving. I am also thankful to have the home hemodialysis option. I can fit dialysis (and everything associated with it) into my schedule with a degree of control and flexibility.
My point in sharing this is to point out the sacrifice necessary to be well.
Is it too much to ask?
If I go back to a traditional 12 hour dialysis schedule I will not be as well as I am. I would not derive the benefits to my heart. I could not be in the gym and at the fitness level I am at. The extra hours gave me the extra benefit.
Can we expect a portion of the population, people with chronic illnesses and complicated health histories, to have to work so hard to be well?
Luckily I see results from this regiment. Luckily I have the mental and physical strength to stick to my regiment.
I would like to pose this conundrum to you. Most dialysis patients would benefit from doing more dialysis. Their quality of life would improve but doing more dialysis will diminish their quality of life by requiring them to sacrifice more time to do dialysis.
I think the care of people with End Stage Chronic Kidney Disease needs to be re-examined.
From the technology perspective. From the treatment and therapy perspective. Everything.
I believe there is a better quality of life for people with kidney failure.
I am open to the change.
I must be part of this change.