When living with chronic diseases like FSGS and NS, patients develop a unique relationship with their doctors. It is important to choose a nephrologist you can trust and have an open line of communication with. They are there to help you and answer any questions you have. Also remember that you are entitled to time and explanations so you can have a complete understanding of your condition and treatment plans. In some cases, you may need to seek out to a second opinion. All patients are entitled to this.
Patients also play an important role in their relationships with health care providers. Below are some helpful ways to choose a nephrologist, work with your nephrologist, and ensure you receive top notch care.
Choosing a Nephrologist
- Look for a doctor who treats your specific type of kidney disease (i.e. glomerular disease).
- Find out whether the doctor participates in your health insurance plan. Many insurance plans allow their members to look up doctors by name or specialty. In addition, the doctor’s office staff can tell you which insurance plans they accept.
- Talk to others who may have been treated for kidney disease or check with your primary care physician for a referral.
- Evaluate the doctor’s credentials. Find out what kind of experience the doctor has and how many patients he/she has treated with your particular condition.
- Ask whether the doctor has access to clinical trials (research studies involving people).
- Find out whether the office has support staff, a Nurse Practitioner (NP) or Physicians Assistant (PA), a social worker, and/or a nutritionist, and ask how they will be involved in your care.
- Consider location and how much time you will need to travel back and forth to appointments.
- If the facility is far away from your home, does it offer a place for you and your family to stay? Is it close to airports, hotels, and restaurants?
- Find out which hospitals/dialysis clinics/transplant facilities the doctor is affiliated with.
- Ask about special services for patients, such as reserved parking spaces or discounted parking.
If possible, arrange for a consultation to meet the doctor and staff. This may help you get a sense of your comfort level with the doctor, including whether the doctor talks with you in a way that you will understand and have your questions answered.
How to Prepare for an Appointment:
- Be aware of any pre-appointment restrictions. When you make the appointment, ask if there’s anything you need to do in advance, such as limiting your sodium or fluid intake.
- Write down any symptoms you’re experiencing. Include all symptoms whether you think they may be related or not.
- Write down key personal information, including any major stresses, recent life changes and family history.
- Make a list of current medications, vitamins or supplements that you are taking (tip for smartphone users: check out our list of apps which can help create a mobile list of medications and more!).
- Consider taking a family member or friend to your appointment. They can provide support and help you remember all the information discussed during the appointment.
- Gather any medical records required by your new doctor
- Write down questions to ask your doctor so you are prepared and can make the most of your short time together.
Tips on Talking with Your Nephrologist
Talking with your doctor about kidney disease may seem challenging. After all, the kidneys are very complicated! Many people experience “information overload” in these conversations and are unable to comprehend everything they hear. Others feel that asking too many questions may seem disrespectful or make them uncomfortable. However, it is important to find ways to effectively communicate your needs, ask questions to understand your condition and options, and learn your doctor’s opinion. Some effective strategies include:
- During your appointment, take notes, record important conversations, or bring a friend or family member to keep track of the details. All of these methods allow you to more accurately review the information after the appointment.
- Tell your doctor up front how much information you want. For example, some patients like to know everything about their disease, including statistics and chances for recovery, while others prefer to hear the least amount of information necessary to make good decisions about their treatment plan.
- Don’t be afraid to speak up if the information you receive doesn’t make sense. Doctors want to ensure you fully understand the information they provide to you.
- Make sure you know the next step of your care before leaving the doctor’s office.
- Ask if there is any written information you can take home to help you remember what was discussed in your appointment or to share with friends and family.
- Preparing a list of questions ahead of time can help you make the most of your time with your doctor. For nephrotic syndrome, some basic questions to ask your doctor include:
- Should I test my urine at home and weigh myself every morning?
- How many milligrams (mg) of sodium should I be consuming per day?
- Besides sodium, are there other dietary or lifestyle changes I should make?
- When should I call the doctor?
- What is the next step if I do not respond to steroids or relapse?
- In addition to these questions, you should also discuss these topics to with your nephrologist:
- Diagnosis and extent of damage to the kidneys
- Treatment options
- Side effects and medication interactions
- What to do if symptoms worsen
- What to do in case of emergency
NKI’s Printable Top 10 Questions to Ask Your Nephrologist (PDF)
What to Expect from Your Doctor
It is important to remember that you and your doctor are a team. It is okay patients to have expectations and criteria for their doctors to meet. It is helpful to expect the following from all of your doctors:
- Good communication at a level that you understand
- Thorough; a doctor who takes time with you the patient, listens to you, looks at the whole picture and then makes decisions
- Knowledge OR the willingness to find answers
- Timely; a doctor and staff who respect your time while at their clinic, but also get back to you in a timely manner
- Friendly and kind; your doctor is providing a service to you, and you deserve to be treated in a friendly and kind manner
Seeking a Second Opinion
Being diagnosed with a rare disease is confusing and frightening, so it may be hard to make decisions about treatment options. Because so little is known about the cause of Nephrotic Syndrome and FSGS, and treatments are ever-evolving, it is important to find someone who has experience with your type of glomerular disease. Seeking the advice of more than one doctor to confirm a diagnosis and evaluate treatment options is called a second opinion.
Asking for a second opinion is your right as a patient or caretaker. Gathering more knowledge about your diagnosis and weighing treatment options may help you feel more comfortable with your health care decisions. It may help you confirm that you are in the right place with your current doctor, or it may allow you to find a new doctor you feel more comfortable with. Either way, it is proactive decision to be sure you have been thoroughly informed about your diagnosis, prognosis and available treatment options.
Tips for preparing for a second opinion include:
- Tell your doctor that you are seeking a second opinion. Most doctors understand the importance of a second opinion, and they may even be able to recommend another doctor.
- See ‘Choosing a Nephrologist’ above for tips on finding the right doctor for your second opinion.
- Seek referrals from NKI, Nephspace, or other support groups.
- Make sure the doctor you are visiting for a second opinion has access to all your records from your original diagnosis.
More information about seeking second opinions can be found at Patient Advocate Foundation.