View from the Chair: Does Dialysis HAVE to Severely Limit Lifestyle?

Several weeks ago, one of the public Facebook group Administrators asked the question, “What can you not do now that you were able to do prior to dialysis?” For people with kidney failure, matching a treatment option to the lives they want to live is critical for quality of life and even survival. But, we largely don’t share that. Instead of leading with values clarification and helping people “try on” each option to see what day-to-day life might look like with it, we come at them with a modality-first approach, saying things like, “Have you thought about home dialysis? (Hell no!) or “You’d be great on PD!” (Okay, then YOU do it!).

This approach tends to be an epic fail, which may help explain why the U.S. has one of the lowest rates of PD and home HD in the developed world. We steamroll over life as they know it and plunk nearly everyone into an in-center chair, perhaps expecting them to be grateful for the life-saving treatment and ignore the very real sacrifices many must make to squeeze thrice weekly 3-4 hour treatments into what was an already-busy life.

People Miss Travel

Answers to the “what can you not do now” question fell into a few fairly predictable categories. Leading the pack with 14 responses was travel. People were sad and wistful about missing the ability to spontaneously “Hop in the car and take off for an unknown destination and length of time.” Some expressed a frustrated desire to travel internationally for weeks at a time, to travel without “a hassle and/or extra expenses,” or even to “take breaks longer than 2 days.” Clinic promises to “set me up for dialysis wherever I wanted to go” did not pan out, due in part to post-pandemic staffing shortages. A PD patient also noted that even visiting a second home was a challenge. “It is a pain to carry all the stuff down there. It would be real nice if you could buy or rent a second cycler for such situations.” (An excellent point…)

The most travel-friendly treatment option is a kidney transplant. It’s tough to beat the convenience of having a built-in blood filter. Several types of dialysis are more travel-friendly than others, however. If you ask patients “What matters to you?” before they choose an option, you can help them understand how travel might work if they choose PD with manuals or a cycler, daily home HD, nocturnal home HD, nocturnal in-center HD, or standard in-center HD. Travel may be possible for a while with conservative management as well—without the logistical, cost, and time hassles of dialysis.

Living with Low Batteries

It is probably no surprise to anyone that fatigue and lack of energy were the second most prevalent responses. One wanted to be able to “Go a whole day without being tired,” and another wanted back “The ability to sustain prolonged physical or mental effort.” Several patients reported that it was difficult to work out: “I can’t run, lift weights or do any physical activities since I’ve been on dialysis without feeling like passing out,” while one missed “walking the hills in my neighborhood. Going on hikes, etc.”

Loss of stamina commonly affects the ability for patients to work, which five respondents regretted, saying, for example, “Work full time!!! This time of year I would pick up shifts, etc. I miss working. I can’t even work part time right now. Hopefully I will soon.”

As with travel, there are kidney failure treatment options that help boost patients’ energy levels compared to standard in-center HD. A successful transplant can certainly ease fatigue and bolster energy once healed. Some people feel much better with PD (others do not). Most patients who do daily home HD seem to be pleased with their energy levels, and this is even more true of nocturnal home HD. One factor in energy is recovery time after hemodialysis (PD is continuous and does not have recovery time), or how long it takes to feel well again. With standard HD, recovery time can range from about 2 hours to well into the next day. A recovery time of greater than 12 hours is linked with an increased risk of death. For short daily HD, recovery time is about an hour; for nocturnal home HD: just 15 minutes.

Food, Glorious Food

I was a huge Oliver movie fan as a kid, and couldn’t resist this subhead—which does serve to point out the important role food—one of the joys of life—plays in many patients’ lives. If you consider how challenging it can be to make any kind of lifestyle changes—even when you really want to and are motivated (to lose weight, for example)—imagine how difficult it must be if you don’t want to and are told you must, or you could die.

Eleven respondents rued their inability to “Eat an Italian sub,” “Eat potatoes to my hearts content,” or “Eat my favorite food.” Fluids are even more limited—and sorely missed. Patients wanted to be able to: “Drink orange juice or eat tomato soup with no consequences,” “Drink as much fluids as I want,” “Drink red wine,” “Jumbo Margaritas on the rocks with salt,” and even, “Drink alcohol and have a hangover the next morning.”

Standard in-center HD requires the most stringent limits on food and beverages, because it is the least amount of dialysis patients can get—and it is intermittent. A transplant or ANY other form of dialysis offers more freedom of diet and fluid intake.

Other Life-limiting Impacts of Dialysis

PD, of course, has a particular limit of its own: the inability to submerge in water. I am constantly amazed to learn that people who have their own swimming pools or hot tubs choose a treatment option that doesn’t let them do what they love. Are they not told?! Several people reported missing bubble baths and swimming. In this regard, a transplant or any form of HD with a venous access does not have this limit (though HD needle sites should be allowed to scab over prior to water submersion).

Not being able to urinate, sleep challenges, and mobility limitations due to bone disease were also mentioned. A few respondents noted that they did not feel they had any limits. One said: “I do whatever I want. Dialysis is not a death sentence. Changed my diet for better 1x monthly I have a cheat day. I travel extensively and have an RV. I go to the lake. Been doing this 16 years.” NOTE: this person does in-center nocturnal HD….

In Case You Missed It

At the non-profit Medical Education Institute, which runs Home Dialysis Central, we are passionate about helping people find their best modality “fit”, so they can feel their best, keep doing the things they love, and live as long and well as they can. To this end, we built a free, online tool: My Kidney Life Plan. Pretend that your kidneys are failing and you need to make a treatment choice. Try it! Then, share it with your patients and help improve their lives.

P.S. – Watch this space. Our new companion book, My Kidney Life: A New Direction will be coming out soon!