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Rare Disease Roadmap: Kidney Disease and You

Journey Overview

Navigate your journey with the rare kidney disease immunoglobulin A (IgA) nephropathy, with insights from a leading physician, a guide to the healthcare providers who treat kidney diseases, and questions to help you prepare for your appointments.

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A Patient’s Journey with Rare Kidney Disease

Eric L.

Diagnosis (DX): Rare Kidney Disease

First Symptoms:

Blood and protein in urine
Swelling in legs, feet, hands, and/or face (edema)
High blood pressure

Can occur at any age
Can progress into end-stage renal disease
Diagnosed using kidney biopsy

Treating a Rare Kidney Disease: A Physician’s Perspective

A conversation with Michael A. Fischman, MD.

Specialty: Michael A. Fischman, MD is a nephrologist at Southland Renal Medical Group in Southern California.

To get the most out of treatments, it is important to work with a nephrologist who is familiar with the disease, who can effectively communicate what you need to know as a person living with a rare type of kidney disease.

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Get to Know Your Care Team

Nephrologist
A person diagnosed with IgA nephropathy will work with a nephrologist, a healthcare provider that specializes in diseases that affect the kidneys. Nephrologists are sometimes called “kidney doctors.” This specialist will oversee treatment and coordinate with other members of the healthcare team.
Primary Care Provider
This is the healthcare provider who oversees important aspects of health and healthcare—checkups, care when you are sick or injured, and preventive care like vaccinations. This provider may be an MD (Doctor of Medicine), DO (Doctor of Osteopathic Medicine), Nurse Practitioner (NP), or Physician Assistant (PA).
Clinical Dietitian
People with kidney disease must carefully monitor their intake of salt, protein, and fats. Too much of these nutrients can impact kidney function. At the same time, a diet must meet a person’s nutritional needs. A clinical dietitian (also called a registered dietitian), can provide education and meal planning.
Other Providers and Specialists
Nurses and pharmacists play important roles in treatment. People living with a rare kidney disease like IgA nephropathy may also have co-existing conditions that require the care of a specialist, such as a cardiologist, endocrinologist, or gastroenterologist.

The Conversation: Questions to Ask Your Healthcare Team

Good communication with your healthcare team will help you get the most from treatment. Keep a symptom journal. Prepare for your appointments by writing down a list of questions and topics you want to cover. The questions below can help you get started.

What are the most important things for me to know about my diagnosis?
How often will I need blood and urine tests?
What treatment do you currently recommend? Ask these questions for every medication you are prescribed.
- Why do you recommend this approach?
- How does this treatment work?
- What is the goal of this treatment?
- How does this treatment affect my immune system?
What else can I do to prevent damage to my kidneys? What can I do to better control my blood pressure?
How will kidney disease affect my day-to-day life? (For example, work and exercise).
Are there other healthcare providers I should be working with?
What other numbers are important to monitor? (Weight, blood glucose, etc.)
Are there other specialists that you recommend I work with?
Will you communicate with my other healthcare providers? Ask what you can do to ensure that your primary care provider and any specialists you are seeing are up to date on your diagnosis and treatment.
Can I have copies of my lab reports and pathology reports?
Where can I learn more about IgA nephropathy and kidney disease?
Who can I talk to if I’m concerned about the cost of treatment?
What new symptoms or changes in symptoms do I need to watch for? When do I need to call you? When do I need to seek emergency care?

Kidney disease is a complex topic, and your appointment is an opportunity to learn more about your diagnosis. If you have a question, ask. If something isn’t clear, ask for an explanation.

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