Preparing for hip replacement surgery with ANCA vasculitis

A hip replacement is not as “simple” as some people might portray it.

As many of you know, I recently had a total hip replacement. Before the surgery, people kept saying things like, “Oh, those are easy!” or “My neighbor was walking in a week!” And every time, I thought, “Well, um, you don’t actually know my health issues.”

Most people don’t know how my eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA vasculitis, complicates everything. They don’t know what immunosuppression means in the context of major surgery. They definitely don’t know what it’s like to navigate something this big with brain fog tagging along for the ride.

So my wife and I did what we always do when we’re taking on something big: We planned, researched, asked questions, and tried to prepare for every reasonable scenario. And as we did that, I realized that some of these steps might be useful for others in our vasculitis community who are facing surgery, too. My experience is orthopedic-specific, but the basic ideas apply anywhere.

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Here’s what helped us get ready:

1. Have a medication game plan

With vasculitis, it’s never as simple as “take this pill and show up for surgery.” Our medications can affect healing, infection risk, inflammation, and even how our bodies respond to anesthesia.

If you haven’t already, ask your rheumatologist and surgeon to talk directly to each other. In my case, we also looped in the anesthesiologist. It matters.

A few key questions I found helpful:

• Will my immunosuppressant or biologic slow down healing?
• Do we need to adjust the timing of my next infusion or dose?
• Should my steroid dose be increased around the surgery to prevent adrenal issues?

Even small shifts in timing can make a big difference. I learned quickly that coordination is not a luxury; it’s the foundation.

2. Infection prevention is a bigger deal for us

For most people undergoing surgery, infection is a risk. For those of us who are immunocompromised, it’s the risk.

Because of that, surgeons tend to be extra cautious, which I appreciate. My doctor did a nose swab to be sure I wasn’t an asymptomatic carrier of methicillin-resistant Staphylococcus aureus (MRSA) infection. He also had me swish with chlorhexidine before surgery to prevent any bacteria in my mouth from entering my system.

You might consider ensuring the following are in place:

• More screening labs than your friends might get
• Really specific wound care instructions
• A lower threshold for calling the office if something looks off
• Discussions about antibiotics before and after surgery

A joint replacement is no small thing; it’s an investment in your mobility and future. Protecting it is worth every precaution.

3. Plan for fatigue, recovery, and the reality of vasculitis

People love to talk about hip replacements as if the recovery is fast and predictable. And for many people, it is.

But vasculitis changes the equation. I don’t know about you, but for me, recovery (from anything) takes at least twice as long — often longer. The healing, fatigue, pain, and stress can complicate the post-surgery experience. This is the time to be gentle and kind to ourselves. I had to remind myself (repeatedly) that my recovery won’t look like the stories people casually throw at me. And that’s OK; it’s not my fault.

All of this adds to the stress and challenges my wife, Pam, faces. Being thoughtful about the impact on the care provider is essential. Her mom organized a meal train for us for those first two weeks. It was incredible.

4. Make peace with both fear and hope

Here’s the truth: I was scared. Anytime you’re immunocompromised and heading into surgery, there’s a layer of uncertainty that healthy people simply don’t feel. And yet, at the same time, I knew this surgery was a step toward a better quality of life.

Two things can be true at once:

• Surgery is scary.
• Surgery can help you move more comfortably and live more fully.

If you’re facing orthopedic issues — or any surgery — please know you are not alone. Our bodies have carried us through a lot. Sometimes we need help, tools, replacements, or repairs. That isn’t failure. It’s part of building a future that still belongs to us.

I hope some of this helps you feel a little more prepared, a little more grounded, and a lot more supported as you navigate whatever lies ahead.

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.