That's how one dialysis patient described the experience.
"Just as a cancer patient deals with chemotherapy and does it to survive, well so do we. Yes, it keeps us alive but this is not what living should be like," said another.
Thanks to my friend Cheryl offering me one of her kidneys, I shouldn't have to go on dialysis unless something happens to torpedo the kidney transplant. I can jump from two failing kidneys to one working one, without floundering in the surf clinging to the fragile lifeline that is dialysis. Anyone acquainted with kidney disease who hears this is overjoyed for me. (A former dialysis nurse simply gave me a wordless but fervent high-five.)
And, this being Minnesota, a place where people don't pry into your innermost thoughts beyond "How 'bout this weather?" I haven't had to answer "So why don't you just go on dialysis?" I have seen the question in anonymous postings on news stories about the scarcity of transplantable organs, as in "Why don't you all just go on dialysis and stop badgering the rest of us for our body parts?"
Well, this is some of what you take on with "just" dialysis:
• restrictions on fluids you can eat and drink, usually a maximum of 4-5 cups per day. This sounds like a lot if you just think, "Oh, a quart of water! I could do that!" But it applies to EVERYTHING that is or could melt into liquid: the broth in soup, the water in ice cubes, the liquid in sherbet or ice cream, any kind of Jello, the contents of watery vegetables. That's why thirst is such a common problem for dialysis patients. I don't know whether "lemon drops and other sour candies" help relieve dry mouth and thirst as nephrologists say they do; I rather doubt it.
• the time element of being on in-clinic hemodialysis three times a week, at 3 to 4 hours a time. Can you find a clinic that offers evening/overnight dialysis so you don't have to take time off work to go? Or are you stuck with the hours healthcare staffers prefer to work? In that case, do you have a job that will let you off for dialysis three days a week? And don't just allow for the hours "on the machine" -- you may also be affected by:
• Fatigue. We soon learned with my father that he wouldn't be mowing the lawn, landscaping or driving long distances on "dialysis days." Instead, he'd spend the morning at the clinic and the afternoon in bed -- and I'm talking about a very energetic, driven, otherwise healthy person in his 50s. Taking all your blood out of your body, filtering out the toxins and squeezing out excess fluid in just a few hours -- instead of having it done gradually all day long by a healthy kidney -- is not a gentle procedure. He'd walk in at 9 a.m. at one weight and blood pressure, and walk back out after 1 p.m. maybe 3-4 pounds lighter (and he was a "good" patient -- those who didn't abide by the fluid restrictions sometimes gained 12) with a significantly lower blood pressure. He had some days where he could recover somewhat by late afternoon, and others where he'd have to lie down to stop the room from spinning.
• Further dietary restrictions, as in "Whoops! Your phosphorus level is way up today. You'll have to cut down on that over the next two days." That would mean cutting out cola, milk and other dairy foods and liver and organ meats. Then, two days later, "Hey! This time it's your potassium!" This list is longer and stranger than I can even provide here, and includes bananas, melons, oranges, milk (again), chicken, cod, salmon, hamburger, wheat (?), carrots, broccoli, spinach. . . My mother nearly went mad trying to grocery shop and prepare meals with these things swinging from one extreme to the other.
• The risks of blood loss and infection -- what with an operation to provide a fistula (a large vessel, usually located in the forearm) that allows hemodialysis needles to access the arterial and venous systems at once. My father found it wasn't an altogether comfortable feeling to know all the blood in his body was being passed through a machine next to him, and that in fact a large amount was in there at any given time. He still recalls the day the blood began clotting. He simultaneously heard the machine alarm and saw the blood in the line going back into his arm stop running and begin clotting all the way back up the tube. A nurse raced from across the room to yank the needle out of his arm before the clotting entered his system.
Because of the clotting risk, he was on blood-thinners and carried constant bruises from doing simple jobs around the house. He also had incredible blood pressure in the fistula, which is right under the skin, and was warned that if anything were to cut it, he would probably bleed out on the spot. A few years after transplant, he had the fistula removed -- going through readjustment in blood-pressure meds for months in order to do so -- but at least doesn't live with that risk anymore.
• The gradual wasting that dialysis causes for most people. Does it accompany the grueling see-saw in blood pressure? Is it a result of fatigue? Does depression come into play? A few people do well on hemodialysis, and actually prefer it to the idea of a transplant. However, some decide on their own to stop undergoing dialysis, knowing full well what awaits them.
Make no mistake: most people who "die waiting for a kidney" are not sitting at home passively dying. They die even though medical staff have been doing everything they can for them 3 times a week for years. They die on dialysis. It's a life-extender, not a life-saver.
Because the above analogy -- to chemotherapy -- seems very apt. If it were possible to remove a tumor, wouldn't you do it, rather than expecting a cancer patient to stay on chemo for as many years as he can hack it?
Dialysis keeps kidney patients alive, but it's not living.
