A good primary care physician is crucial to my vasculitis care

When living with vasculitis, we patients often zero in on our specialists, and the list can feel endless: rheumatologists, pulmonologists, nephrologists, otolaryngologists, cardiologists, and more. But what sometimes gets lost in the shuffle is our primary care physician (PCP).

As I’ve settled into a new city and searched for a new PCP, I’ve reflected on how important this role is for a care team. It deserves more attention than it usually gets.

While living in Tucson, Arizona, I was lucky to have what I’ll boldly call the best PCP in the country. You might think I’m exaggerating (maybe I am; I’d love to hear about your amazing PCPs, too), but that’s how she felt to me. Before I moved, I gave her a bag of Life Savers gummies, because that’s precisely what she was for me: a lifesaver. I even suggested she pack up and come along with me, but she politely declined.

The funny thing is, technically, she’d been my PCP for 20 years before I actually met her in person. (I always saw her nurse practitioner instead.) In the two decades before my vasculitis symptoms appeared, I never really needed a doctor. But when I finally did get sick, I started seeing her regularly. Not once did she ever give up on me. She supported me, my wife, and my mom, who also became her patients.

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Like many PCPs, she didn’t have much direct experience with vasculitis. But she had intelligence, curiosity, and a willingness to partner with me. She brought medical expertise to the table, while I contributed my personal experience. We learned together, a priceless type of partnership.

Over the years, I’ve realized certain things that make a PCP valuable on a vasculitis care team. I’ve also discovered ways we can help them be a strong partner, such as by:

• Connecting your care. Make sure all of your specialists have your PCP’s information, and ask them to share records directly. This is critical if you ever apply for disability.
• Keeping them in the loop. Update your PCP on how vasculitis affects you, including the ups, the downs, and the weird surprises. This will help them learn and give you another layer of support.
• Sharing your HEAT (Hospital Emergency Advocacy and Treatment) kit. Give them a copy of the page with your disease-specific symptoms. This can help them triage issues quickly when the unexpected happens.
• Asking for thoughtful referrals. A great PCP can connect you with specialists who value the physician-patient partnership and can expedite referrals when time is critical.
• Using your patient portal. Communicating this way helps your PCP keep track of information without things slipping through the cracks.
• Keeping your list of medications current. Make sure they have all of your medications, including those prescribed by your specialists.
• Talking about mental health. Vasculitis often comes with depression and anxiety. Addressing this with your PCP can be life-changing. It’s just as important as managing the physical side of care.

I was fortunate to have such an excellent doctor and human being in Tucson. Now that I’m searching again, I hope to find someone equally supportive.

If you have a great PCP, don’t forget to tell them how much they mean to you. If you don’t have one yet, keep looking. A PCP who will walk with you through this lifelong, bumpy journey is worth the effort to find.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.