Managing Dialysis When You Have a Rare Kidney Disorder

Living with a rare kidney disorder often means navigating a maze of late diagnoses, scarce treatment options, and daily symptom management. When dialysis enters the picture, it can feel like one more heavy layer on an already complex journey—filled with questions, uncertainties, and the need to adjust your life around treatment.

Yet understanding how dialysis works, why it may look different for rare kidney conditions, and what steps you can take to advocate for your needs can empower you to face this chapter with clarity and confidence. In this article, we’ll unpack what dialysis means for people living with rare kidney disorders and share practical insights to help you manage treatment while protecting your quality of life.

Understanding Dialysis

Dialysis is a treatment that takes over the critical job of the kidneys when they can no longer fully remove waste, extra salt, and excess water from the blood, thereby maintaining the body in balance. When kidney function drops below a certain level, these wastes can build up, leading to dangerous symptoms like swelling, nausea, weakness, and even heart complications. Dialysis helps clear these toxins so that the body has an easier time maintaining its chemical balance.

There are two main types of dialysis:

• Hemodialysis: Blood is gently removed through a tube in the arm or a dialysis catheter and passed through a special machine that filters out waste and excess fluids before returning the cleaned blood to the body. Hemodialysis typically takes place in a dialysis center three times a week, with each session lasting around 3–5 hours, though some patients may have different schedules based on their needs.

  
  

• Peritoneal Dialysis: Instead of using a machine to filter the blood externally, peritoneal dialysis uses the lining of the abdomen (called the peritoneum) as a natural filter. A cleansing fluid is introduced into the abdominal cavity through a catheter, absorbs waste and extra fluids from the blood vessels, and is then drained out. This type of dialysis can often be done at home, either throughout the day (CAPD) or overnight using a machine (APD), giving patients more flexibility.

While dialysis helps manage symptoms and prevent life-threatening complications, it is not a cure for kidney disease. It is a supportive treatment that can help a person to feel better by improving energy levels and allowing for the continuation of daily activities as much as possible while living with advanced kidney disease.

Why Dialysis May Look Different for Rare Kidney Disorders?

For individuals with rare kidney disorders such as Primary Hyperoxaluria, Cystinosis, Atypical Hemolytic Uremic Syndrome (aHUS), Complement 3 Glomerulopathy (C3G), and Immune Complex Membranoproliferative Glomerulonephritis (IC-MPGN), dialysis often involves unique challenges that set it apart from dialysis for more common kidney diseases.

• Unique Toxin Buildup

  Certain rare kidney conditions lead to the buildup of specific waste products or proteins that standard dialysis may not fully clear. For instance:

  • Primary Hyperoxaluria leads to excess oxalate buildup.

  • Cystinosis results in cystine crystal accumulation in tissues.

  • In C3G and IC-MPGN, abnormal complement system activation and immune complex deposits can drive ongoing inflammation and damage, even during dialysis.

  These complexities may require additional treatment strategies to manage the underlying disease process and prevent further complications.

  
  

• Different Frequency and Duration Needs

  Because of unique toxin buildup or rapid disease progression, some patients with rare kidney disorders may need dialysis more frequently or for longer sessions to effectively manage symptoms and toxin levels.

  
  

• Multi-Organ Involvement

  Many rare kidney disorders affect multiple organs, not just the kidneys:

  • Cystinosis can impact the eyes, thyroid, pancreas, and muscles.

  • aHUS may affect the blood, brain, and heart.

  • Ongoing immune activation in C3G and IC-MPGN can require treatments to address inflammation beyond what dialysis can provide.

  This multi-organ involvement means care must be coordinated across nephrologists, ophthalmologists, hematologists, and other specialists.
  

• Access Challenges

  Establishing and maintaining vascular access for hemodialysis can be more complex for individuals with rare kidney disorders due to prior surgeries, anatomical differences, or disease-related complications. Early planning and discussions with your dialysis team can help address these challenges and reduce risks.

  
  

• Mental Health and Lifestyle Impacts

  Dialysis can be a significant adjustment for anyone, but when layered on top of a rare disease journey, it can feel especially heavy. Patients may experience:

  • Fatigue during or after dialysis sessions

  • Changes in appetite and taste

  • Fluid restrictions, making daily routines challenging

  • Difficulty balancing work, school, and caregiving responsibilities

  • Emotional distress, anxiety, or depression due to the ongoing burdens associated with treatment

It is important to acknowledge these challenges without self-blame and seek help when needed. Speaking openly with your care team, connecting with rare kidney disorder support groups, and accessing mental health resources can provide support and practical tools that help to maintain a higher quality of life while managing treatment.

Tips for Managing Dialysis with a Rare Kidney Disorder

Dialysis is a big adjustment, especially when paired with the complexities of living with a rare kidney disorder. Here are some practical tips to consider when navigating this journey:

• Track Symptoms

  Keeping a notebook or using a notes app to record symptoms before and after each dialysis session, such as fatigue levels, swelling, blood pressure readings, or any unusual sensations, can help inform care teams to address discomfort and catch complications early.

  
  

• Stay Informed About Associated Rare Conditions

  Learning about the specific rare kidney disorder—whether it is C3G, IC-MPGN, Primary Hyperoxaluria, or another condition—can help with the overall understanding as to how the body may interact with dialysis.  Understanding how a rare kidney disorder impacts toxin buildup, fluid management, and overall dialysis needs can help patients and loved ones participate confidently in their care decisions.

  
  

• Advocate for Individualized Care

  Dialysis is not one-size-fits-all, especially for rare conditions. Some potential needs to consider when having discussions with a dedicated  healthcare team include:

  • Frequency or length of dialysis sessions

  • Adjustments in dialysis prescriptions to manage unique toxins

  • Additional medications to address underlying disease processes alongside dialysis

  It’s okay to ask questions and request second or even third opinions if you feel your needs and concerns are not being fully addressed.

  
  

• Maintain Nutritional Support

  Diet and fluid management are essential during dialysis, and rare kidney disorders may require additional considerations. Working with a renal dietitian familiar with the associated rare condition may help to ensure enough calories and nutrients are being consumed while managing fluid and mineral balance safely.

  
  

• Seek Mental Health and Community Support

  Living with a rare kidney disorder while managing dialysis can feel isolating. Connecting with others going through similar journeys can at times feel like a vital lifeline. Rare kidney disorder support groups, online communities, or local rare disease dedicated organizations can help people with unique challenges connect with each other. It’s important to reach out to a mental health professional if you ever feel overwhelmed. Mental health is just as important as physical health.

  
  

• Plan for Flexibility

  Dialysis may become a part of a weekly routine, but it does not mean life has to stop. With planning, many patients and supporting family members continue to work, study, travel, and enjoy life. It’s important to communicate life goals with the healthcare team so they may be able to help establish a treatment schedule that supports your life’s priorities.

Navigating dialysis alongside a rare kidney disorder presents unique challenges—but with knowledge, planning, and the right support, it is possible to maintain both your health and quality of life.

Looking Ahead: Hope for the Future

While dialysis can feel like a heavy chapter, it is important to remember it may also be a lifesaving bridge that allows you to continue living, growing, and connecting with the world around you.

Advances in research for rare kidney disorders such as C3G, IC-MPGN, Primary Hyperoxaluria, and others are ongoing, with new therapies, clinical trials, and potential gene and complement-targeting treatments under development. These innovations offer hope for better disease management, improved quality of life, and, in some cases, the possibility of reducing or delaying the need for dialysis in the future.

In the meantime, finding a care team that listens, staying informed about your condition, and seeking support from dedicated community’s leaders and organizations can provide you with the tools you need to navigate dialysis with confidence. Remember, every step you take—no matter how small—toward understanding and advocating for your needs is a step toward a stronger, more hopeful future.

References

1. https://www.kidney.org/atoz/content/dialysisinfo

2. https://www.kidneyfund.org/kidney-disease/rare-kidney-diseases

3. https://www.rarekidneyhealth.org

4. https://rarediseases.org/rare-diseases/complement-3-glomerulopathy/

5. https://www.kidney.org/atoz/content/mpgn

6. https://www.mayoclinic.org/tests-procedures/dialysis/about/pac-20384841

7. https://kidney.org.au/your-kidneys/living-with-kidney-disease/dialysis

8. https://www.cystinosisresearch.org/about-cystinosis/

9. https://rarediseases.org/rare-diseases/primary-hyperoxaluria/

10. https://www.ahus.org