The Horrors of Dialysis

…based on the personal experience of my late wife

Joseph George Caldwell

6 August 2022

In 1996, a family friend, “Jack,” age 83, suffered kidney failure, and he began hemodialysis. After two weeks on dialysis, he called his family together, told them that life on dialysis was not worth living, and informed them that he was stopping it. He died a few days later.

About 2012, my wife, Jackie, age 75, needed to have a heart valve replaced. In order to perform this procedure, it was necessary to take a nuclear magnetic resonance image (“MRI scan”) of her heart. My wife suffered from chronic kidney disease, caused by diabetes and overuse of ibuprofen. The “contrast dyes” used in the MRI procedure damaged her kidneys further, so that she had to be placed on hemodialysis immediately following the heart-valve operation. The hemodialysis was conducted at the hospital until she was discharged, and then continued at a hemodialysis center.

The hemodialysis procedure consists of three four-hour treatments a week, either on Monday-Wednesday-Friday or on Tuesday-Thursday-Friday. At this stage of life, the primary social activity of my wife was duplicate bridge, which she played on Tuesdays and Thursdays. So, she opted for dialysis on Mon-Wed-Fri. I drove her to the dialysis center and picked her up four hours later.

The hemodialysis was living hell. To perform the dialysis, it was necessary to place a “fistula” in her arm, to which the dialyzer would be connected. The first fistula became stopped-up and had to be replaced.

During the dialysis procedure, the patient is seated in a reclining chair. When the blood leaves the body and enters the dialyzer, it cools a little before returning to the body. The result is that the patient feels very cold, and no amount of blanket covering can make her feel warm.

Once connected to the dialyzer, the patient must remain in the recliner for the full treatment time, about four hours. The problem my wife faced is that she needed to urinate long before four hours. After about an hour of treatment, she was forced to urinate where she lay. Feeling very cold and lying in her urine throughout most of the dialysis treatment time was extremely uncomfortable for her.

On the days of her dialysis treatments, Mondays, Wednesdays and Fridays, my wife felt absolutely rotten. On the following days, Tuesdays, Thursdays and Saturdays, she felt completely wiped out. The first day of the week for which she felt normal was the last day of the week, Sunday. The situation was that the dialysis procedure caused severe malaise and fatigue for six days of the week. She was not able to play bridge, or engage in any other socially meaningful activity, for the entire time that she was on hemodialysis.

The doctors who did the heart-valve operation did not describe the horrors of dialysis, or estimate for how long it would be necessary, or inform her that it might be permanent. The other patients in the dialysis center told her that no one had ever left the center alive, that she would be there for the remainder of her life.

After six weeks of this torture, my wife was contemplating suicide.

Then, miraculously, her condition improved, so that she could stop the dialysis and return to a normal life.

Regrettably, the kidney disease progressed, and, two years later, in 2014, my wife was once again facing the prospect of dialysis. Now well aware of the total unacceptability of hemodialysis, she decided to try peritoneal dialysis.

The experience with peritoneal dialysis was much better, but not without problems. The procedure is done at home, four times a day. An access port is surgically placed in the lower abdomen, through which fresh dialysis fluid (basically, a saline solution) is injected into the peritoneum, allowed to remain (“dwell”) for about one-half hour, and removed. Each treatment requires about an hour of time for the patient and for a helper, who in this case was me. The time is spent disinfecting the body near the access port, disinfecting the IV pole, connecting the dialysis bags (one filled with fresh dialysis solution and the other empty), opening the fresh bag (on the IV pole) to allow the flow of the dialysis fluid into the peritoneum, waiting for osmosis to move the toxic wastes from the body to the dialysis fluid, opening the empty bag (on the floor) to receive the used dialysis fluid, and disconnecting the bags.

The peritoneal dialysis procedure is appropriate for retired couples (such as my wife and I were), who can perform the procedure every four hours during the day, every day.

As part of home dialysis, the patient sees a nephrologist a few times a year, and a nurse once a month. The nurse takes urine and blood samples to use as a basis for providing dietary guidance and adding medications to the dialysis solution.

The dietary advice changes every month. A dietician informs the patient about what foods may or may not be eaten.

After about a year of home peritoneal dialysis, my wife developed peritonitis. It had to be treated in a hospital. The antibiotics that were used were so strong that they destroyed all of the bacteria in her intestines, and she developed Clostridium (or Clostridioides) difficile (“C. diff”) and chronic diarrhea. This continued for about a month.

After about two years on peritoneal dialysis, my wife died of a heart attack, following the prescription of a strong medication by the dialysis center.

That dialysis is so unpleasant begs the question of why people do it. Why do they not all opt for death after a few weeks on dialysis, as did our friend Jack?

There are basically three explanations for this situation. First, the human instinct for survival is very strong, and many people will cling to life no matter how wretched their quality of life. Second, the dialysis industry is extremely profitable. In the last month of my wife’s life, her nephrologist charged $2,196 per day (or about $70,000 per month), but he did not see her a single time, and the nurse saw her one time. That’s about a million dollars a year for treatment, where the nephrologist sees the patient a few minutes during the year, the nurse sees her for perhaps fifteen minutes per month, and the husband provides almost all of the care, at no cost. (Peritoneal dialysis is low-tech. Except for the treatment of peritonitis, which requires hospital care and strong antibiotics, the cost of peritoneal dialysis involves only the cost of an IV pole, a few plastic clamps, some disinfectant wipes and alcohol, some sterile gauze and tape, and several liters of saline solution per day. Deliveries of the saline solution are made once a month, based on inventory reports.)

The third reason is that the dialysis industry does a very good job of selling the benefits of dialysis, while suppressing information about the drawbacks. If you watch Internet videos about dialysis, such as those produced by daVita, you will be provided much information about how simple and easy the process is, and virtually no information on negatives. Many patients have no idea what they are getting into. For many, such as our friend Jack, a quick death is far preferable to the suffering and low quality of life provided by dialysis.