Monday, October 11, 2010

Miracles Have Their Downsides

Photo: Rick at his first dialysis session one year ago. That's Jean, the RN, reading dialysis educational material to him. Jean experienced acute renal failure and was on dialysis herself a few years ago. She recovered. Many of the people who work with dialysis patients have experienced renal disease themselves or in loved ones.

It is miraculous what medical, scientific, and engineering geniuses have been able to do for people with kidney failure. Millions of lives have been saved by dialysis.
But what is it like to be saved? Fact is, the only reason anyone would do dialysis is to stay alive.
Think about it: your kidneys work every minute of your life, waking and sleeping, filtering out toxins, removing excess fluid (urine) from your body, keeping your body in chemical balance. Dialysis tries to do all that in 12 hours a week – three sessions of four hours each. Your blood gets sucked into tubes, run through filters, treated with various additives. You are tested to monitor blood composition and chemical balances so that kidney techs can do by hand what your kidneys used to do without you having to give it a thought. You have endless medical appointments, exams, tests, and surgical procedures. The medical community is constantly tweaking you, trying to keep you in balance and alive. Fistulas develop aneurysms; you get headaches; you pass out from low blood pressure (the Aid Car is called to the Kidney Center almost every day for a crashing patient); infection is a constant threat; your diet consists of chicken and white bread and not much else.
My husband Rick would go in for dialysis three days a week, and spend the other four days of the week exhausted and recovering from dialysis. When he went on Monday, Wednesday, and Friday, his favorite day of the week was Sunday. By then he was somewhat recovered from his Friday dialysis and he didn't have to go anywhere.
Like him, most people who are on dialysis are not able to work. Like him, most have to go on disability, or retire.
Sometimes the techs who hook you up to the dialysis machines don't hit your fistula on the first poke with the size 16 needles. Sometimes they get it wrong and cause an “infiltration” of blood into the tissues of your arm. This happened to Rick early in his dialysis experience, and his entire left forearm turned the color of a ripe plum. We have pictures.

Photo: Rick shows off his fistula

The dialysis techs work hard and have to move fast. They dismantle used tubing and filters after a dialysis session, clean the chair with antiseptic solution, and set up the new, clean, sterile filters, tubing, IV bags, iron and other supplements that are added to the patient's blood. They hook the patient up and monitor the patient – actually, they monitor several patients at a time - during dialysis. They are the foot troops in the battle against kidney failure. I read that they are paid on average $20 to 30 thousand dollars a year.
Have you tried to live on or raise a family on $20 to 30 thousand dollars a year lately? Granted it sounds like a lot of money to me right now, but that's from our perspective here in disability land. I'm saying that it's a shame that people who work so hard and are necessary for the survival of renal patients are paid so poorly. It's part of that inverse economic model we live in where the more important your work is, for example raising children, the less pay and respect you get.
Still, the techs do their jobs as quickly and efficiently as they can, while the patients sit in their individual worlds, reading, watching TV while wearing earphones, or sleeping, while time goes by in an eerie silence broken only by the alarms and beeps of the dialysis machines. Most patients are grateful to be alive. Patients are told that the more you dialyze, the longer you'll live. Dialysis is a miracle.
One day while Rick was waiting for his chair at the Kidney Center a frail lady in a wheel chair who had finished her dialysis was parked next to him. She reached a bony pale hand over and rested it on his arm. “How do you stand it?” she whispered to him. “How do you stand it?”
It's a valid question.
Maybe next time we'll talk about kidney transplants.

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