26 Dec Live From Dialysis, Post #3, FAQ
How are you doing?
Obviously, we all get this one a lot… but I get it with imploring eyes, with an extra stare… with a how are you really, though? I’m not complaining, but this is definitely one of the unavoidable challenges of the health transparency that i am running with: actually answering honestly, while maintaining appropriate boundaries. So pardon me if we are in the grocery store and I inadvertently share too much or come off like a cold, unwilling wall. It’s a balance… I am working on it.
How does dialysis work?
Well, basically, the dialysis machine is like an external kidney. I get to the center, get myself situated in my chair (it’s basically a Lazy Boy), and one of the team of Nurses here sticks me twice on the upper part of my left arm, where I have my Fistula. That’s what its called where a vascular surgeon went in and attached an artery to a vein in my arm. This creates what’s called a Thrill, where you can feel the blood rushing through. And interestingly, I’ve been told that this is actually the rate that blood is always rushing through our bodies, which is remarkable, especially when you feel it.
I am hooked up to the machine, with blood going out via a deep red tube, being “washed” by the machine, and then being returned by another tube. While it is out, the blood is actually cleaned via osmosis in the dialyzer (the magical tube part of the machine that acts as the filter). The blood is run through these very very fine tubes (inside this tube) that have super-thin, plastic membranes that allow for “toxins” to be extracted.
The “clean” blood is returned via another dark red tube to my left arm. On any given day, I am on the machine for 4 hours, plus the getting on and getting off, which adds close to an hour.
What do you do with all that time?
I have found that sleep is actually essential. If I don’t sleep for at least a few minutes of the time, I feel totally whack-a-do later in the day. For the first 3 months, I found it nearly impossible to sleep here… but once I realized how much it improved my energy for the rest of the day, I made it a priority.
I sleep, wake up and drink some coffee and have a little snack, and then usually get out my laptop, which I can use with my right hand. I get some admin work done (WHA does seem to have nearly endless admin work), occasionally give myself some entertainment of some kind (thank god for online video via HBO, Hulu, Netflix, etc), and sometimes have a guest, which has been so lovely…
How long do you do do dialysis for?
Until we find a kidney donor. One could do it for years (one of my neighbors is on year 8), but the word is that it slowly degrades your health. From what I understand, the dialysis machine replaces some kidney function, but not all. There are still a few nutrient levels to be managed with food and medications (usually sodium, potassium, & phosphorous) that, over time, lead to other problems, blood pressure issues, general metabolic issues, fluid retention, etc.
I am younger (and generally healthier) than most folks here. They say that the transplant waiting time is generally shorter for younger folks, and (fingers crossed) my time here will be measured in months and not years.
Are you on a list?
I am. Currently at Mount Sinai (where I was receiving care when my kidneys really tanked), and in the process of switching to Albany Medical. Apparently the wait time at Albany Medical is considerably shorter, the care is excellent, and the commute is about half of Mt Sinai for me. The process of switching takes months, but that’s currently what I am working on.
to be continued…