Captaining my care | IgAN Connect

Captaining my care


Judy, a person living with IgA nephropathy

Living with a rare disease like IgA nephropathy can be a challenging journey. Finding a team to educate, listen to, and support you can be even more difficult. Initially, I struggled to find that after my diagnosis. However, once a team of doctors validated what I was feeling, I felt living with this disease became a little easier. I learned that a great team could make a world of difference.

My Struggle to be Heard

You often hear nightmare stories — maybe you even experienced some of your own — of doctors misdiagnosing or not listening to patients, leaving us feeling frustrated and defeated.

In 2018, I noticed things weren’t quite right with my health. I had experienced extreme fatigue, body pain, bouts of sleep apnea, and I felt like I was repeatedly getting sick. This prompted me to seek out medical support. A doctor ran tests, but he dismissed all the mid-range results and instead suggested my symptoms were related to a “weight issue”. I was so frustrated I left the office without any real answers. Experiences like these may lead to patients not receiving the care they need.

Building My “Unicorn Team”

Anyone looking for doctors knows it can be a challenge. I was fortunate to find my Primary Care Doctor in 2019. I was still experiencing the same medical problems, but it was clear from our first meeting that I had found a diamond in the rough. She listened to me, allowed me to ask questions, and never once brushed me off.

A Primary care doctor you can speak openly with, who takes the time to get to know you, and who has effective referrals is key to building a team you can trust. Their referrals tend to follow their treatment style. Therefore, if you have a primary care doctor that doesn’t align with your personal style, rushes you out of the office, and dismisses you, then there’s a good chance that their referrals, to specialists such as a nephrologist may act the same.

 Tricks I’ve Learned Along the Way

How can you find the right medical team for yourself? Prior to my son being born, we did pediatrician interviews. We did our own research and got recommendations. From there, we made a list of the ones who met best our needs and requirements. We went to meetings armed with a list of questions and interviewed each doctor. This is what we all should do when looking for a doctor. Here are some key things I have asked when meeting with potential doctors:

  • Are they available through a messenger service or patient portal for questions?
  • What hospitals are they affiliated with?
  • How familiar are they with IgA nephropathy and other autoimmune diseases?
  • What relationships do they have with nephrologists?
  • What other specialists have they worked with?
  • How long does it take to schedule an appointment with them?
  • Do they support patients being their own advocates and doing their own research?

In addition to the interview, check the internet for reviews. Some doctors have business pages and there are a few different sites that specialize in reviewing doctors. Reviews are a great way to see if a particular doctor might be right for you.

Once you choose a primary care doctor, work with them to build your medical team. This keeps them looped into your care and can enable them to explain things you may not understand or help double-check medications. Personally, I have several doctors across different networks, however, my primary care doctor makes sure they all know to send reports to my nephrologist because of my IgA nephropathy diagnosis. All prescriptions and procedures must get approved by my nephrologist — he even approves my travel.

For people with IgA nephropathy, our nephrologist is everything. They are the ones who know our disease and its complexities. However, they are only human, and busy. IgA nephropathy is a rare disease and there is a chance our nephrologist may not be versed in the current treatments and latest research. This is where we need to do our own research. We have to know what is available to us and what the new research says, so we start these important conversations.

Be Your Own Best Advocate

Once your team is in place, remember, they work for you. From the first appointment, assert yourself. Introduce them to your friends and family, who are there to support you and be your voice when you don’t feel well. It is important that your team understands that every IgA nephropathy patient is different, and each of us has our own journey. They need to be open to listening to us, and allowing us to know all the information, especially when it comes to treatments and procedures.

For years we have heard, “the doctor knows best,” yet we have learned over time this is not always true. It can be very intimidating to speak up in a doctor’s office or emergency room, but it is so very important. Here are some tips to help you be your own advocate:

  • Prepare and do your research: One of the best resources you have for this is other IgA nephropathy patients. Listen to their stories and speak one on one. In addition, search medical journals and treatment websites. Remember, knowledge is power.
  • Make a list: Be sure to include information you want to discuss, questions you have, and research you have discovered. Remember doctor’s appointments tend to last 15 minutes. A list will keep you on track and allow you to check off items as you go.
  • Track your symptoms: This will help you remember if there are any changes or red flags that need to be discussed.

You know your body best. It has been with you your entire life. Having a medical team that understands that and supports you having a say in your care is key to a successful experience. For more tricks on how to be your best advocate, check out this doctor discussion guide.