Preparing for effective appointments with your healthcare providers

• Mention the reason for your visit when making the appointment; this will give the healthcare provider time to review your medical history in advance to better address your concerns
• Do your research ahead of time, but remember to keep an open mind. Your healthcare provider will bring their medical expertise and experience to the table
• Write down your questions or concerns ahead of your visit, and bring them with you so you don’t forget to ask about them
• Gather your latest test results, if available, to bring with you to your next appointment
• Don’t be discouraged if you don’t get clear answers—just ask your healthcare provider to explain things again
• Advocate for yourself and don’t be afraid to ask for additional tests if you think they may be necessary

• A nephrologist is a specialist trained in the health and conditions of the kidneys
• A urologist is a surgeon who specializes in treating disorders of the urinary tract; this is the specialist who would handle kidney stone removal procedures
• A primary care provider (PCP) is someone who is responsible for most aspects of your overall health and care (for example, a pediatrician, a family physician or doctor, an internist, a general practitioner, a nurse practitioner, or a physician’s assistant)
• The term “healthcare provider” (HCP) is sometimes used to cover any of the people on this list, as well as anyone else who provides medical care

Primary hyperoxaluria (PH) is a progressive genetic disease that can get worse over time, so it’s important to monitor any changes in your health. It’s a good idea to keep a record of your signs, symptoms, and test results for yourself and for your healthcare providers.

The list below can help you think through any symptoms you may have been experiencing that could be related to kidney stones or kidney health. Remember that some of these signs could be unrelated to your PH and should be discussed further with your healthcare provider.

• Severe pain in the side, lower back, and/or abdomen; pain may be accompanied by vomiting or fever
• Blood in the urine (dark urine)
• Cloudy urine
• Painful or difficult urination
• Infants: Inconsolable crying and irritability
• Young children: Abdominal pain, vomiting, constipation, repeated urinary tract infections (UTIs)

If you are experiencing any of these symptoms, ask your healthcare provider to check for stones and discuss whether you need to schedule a surgery.

• Fatigue, low energy, difficulty concentrating
• Loss of appetite, nausea or vomiting
• Dry and itchy skin
• High blood pressure (hypertension) that's hard to control
• Change in how much you urinate
• Foamy urine
• Persistent puffiness around your eyes
• Dark urine (blood in the urine)
• Swollen ankles or feet
• Muscle cramping
• Chest pain
• Shortness of breath

If you are experiencing any of these symptoms, ask your healthcare provider about kidney health and blood tests (such as eGFR) that can help diagnose and monitor kidney damage.

• Change in your vision
• Fractures or bone pain
• Skin sores (called ulcers) or bumps
• Problems with your heart muscle or the rhythm of your heart

If you are experiencing any of these symptoms, ask your healthcare provider about systemic oxalosis and consider a test for plasma oxalate.

The Healthcare Provider Discussion Guide will help you organize your information for upcoming appointments. It includes a symptom tracker (similar to the list above) and a place to keep track of all your test results.

You can download the guide below, then print it out, fill in your information, and bring it to your next appointment.