The Truth About Dialysis: Five Common Misconceptions Unveiled

When facing the possibility of starting dialysis, many people wonder what they wish they had known beforehand. So, I've compiled a post on the five most common things I hear:

1.     Pain: Despite reassurances from dialysis professionals, it's essential to acknowledge that pain is a real aspect of peritoneal dialysis (PD). However, its intensity and duration vary greatly from person to person. The most common type of pain experienced is drain pain, typically felt at the beginning of treatment. For some, this discomfort fades over time and may never return. However, for others, like myself, it can persist, sometimes occurring unpredictably during both filling and draining. While most PD patients experience minimal discomfort, there are exceptions. For a fortunate few (insert sarcastic wink here), like myself, fill pain can be excruciating, surpassing the imagination of the average person. My fill pain comes and goes without warning, resembling a sharp knife in the abdomen. The silver lining is that it typically lasts for only 10 to 15 minutes before subsiding.

2.     Lifestyle Changes: Despite assurances that peritoneal dialysis (PD) won't disrupt your life too much, the reality is often quite different for many individuals. While it's true that you technically can still engage in many activities, there are significant limitations and adjustments that need to be made. For instance, travel becomes a logistical challenge as you must remain within a certain distance from your transplant hospital in case you receive the call for a kidney transplant. In my case, living in Southern California means I can only travel to nearby destinations like Vegas or Phoenix, but more distant locations like Florida, New York, or Europe are out of the question due to the risk of not being able to reach the hospital in time. Additionally, activities like swimming, which are typically enjoyed freely, come with their own set of restrictions. While it's possible to swim in a private pool or the ocean, public pools are off-limits due to the heightened risk of developing peritonitis, a potentially life-threatening infection. Even swimming in the ocean carries risks due to pollution and toxins, making it a daunting prospect for many patients, myself included. These are just a couple of examples, but there are many more lifestyle adjustments that individuals on PD must make. What sacrifices have you had to make in your own experience with PD?

3.     Transplant Listing: The biggest misconception out there is that you have to wait until you're on dialysis to even be eligible for transplant listing and surgery. This is incorrect. If your GFR is 20 or less, you can be placed on the transplant list before starting dialysis and even undergo a transplant beforehand. Don't believe it? That's exactly what Selena Gomez did! So, if your GFR is 20 or below, tell your doctor you want to be on the list and ask to be referred to a transplant hospital. You may be one of the lucky ones who never has to deal with dialysis.

4.     Support Groups: While there are indeed support groups available for patients on dialysis, they can often be challenging to find. However, when you do find a good one, it can be a true gem. The sense of empowerment that comes from knowing you're not alone, and that others have walked a similar path, is invaluable. Many large organizations offer support services and peer mentoring, which can make a world of difference. Unfortunately, accessing these resources isn't always straightforward. I, for one, requested a peer mentor and never received a response. Similarly, when I attempted to join a support group, it took a year before I heard anything back. Considering the multitude of social workers working with kidney patients, one might expect support groups to be more readily available. The reality, however, is that they can be elusive. How have you navigated the search for support during your journey with dialysis, and what resources have you found helpful along the way?

5.     Don't Wait: Perhaps the most crucial lesson I've learned is not to delay initiating dialysis. Your kidney function when you start dialysis is typically what you'll maintain throughout treatment. For instance, if your glomerular filtration rate (GFR) is 15 when you begin dialysis, it's likely to remain at that level. Why does this matter? Well, your kidney function directly impacts your dietary restrictions, fluid intake, and overall bodily function. The higher your GFR, the fewer restrictions you'll face regarding what you can eat and drink, and your body will function more smoothly. On the other hand, waiting until your GFR is 5 or below before starting dialysis can result in stricter dietary limitations, potentially requiring you to take binders and struggle more to maintain your health. The takeaway is clear: Don't wait. Initiating dialysis sooner rather than later can lead to a better quality of life and fewer challenges in managing your health.

What are some things you wish you had known

before starting dialysis?