Finding resilience after a challenging vasculitis diagnosis

Laure Larkin, left, and her wife, Lynette Matson, celebrate their anniversary. (Photos courtesy of Laure Larkin)

This is Laure Larkin’s story:

It all started with what seemed like a stubborn sinus infection and a chest X-ray that raised some eyebrows. No big deal, right? Fast forward a couple of months, and suddenly, I was being told I might have lung metastases — as in cancer. The oncologists weren’t exactly rushing me into treatment, which is never a good sign. Their advice? “Take a few vacations first.” You know things are bad when doctors encourage you to prioritize leisure time over medical intervention.

So we took vacations. My wife, Lynette, and I powered through three trips — one with friends, two with family — except “powered through” might be an overstatement. In reality, I mostly just existed, feeling worse by the day while Lynette juggled playing nurse, travel agent, and emotional support all at once. By the time the fourth vacation rolled around, I was too sick to even attempt it. That was our cue to call Memorial Sloan Kettering Cancer Center (MSKCC) and say, “Hey, this whole waiting thing? Not working out for us.”

Lynette, in an act of pure love (or sheer desperation), drove into New York City for the first time in her life — a bucket-list item she never actually wanted to check off. By the time we made it to MSKCC Urgent Care, I was completely useless, and she was running on adrenaline and pure willpower.

The first night was a whirlwind. The blood work was bad. My kidneys were failing. My lungs were full of something suspicious. And for a bonus, I was freezing. Lynette, ever the problem solver, offered to cover me with paper towels — our only available “blanket.” Nothing says romance like improvised insulation.

Day 2 brought a lung biopsy, which was promptly cut short when I developed a collapsed lung, because why not add a little extra drama? I spent the next 11 hours in a fun game of “Let’s see if we can put Humpty Dumpty back together again.” Alone in the dark, watching the minutes tick by, I started wondering: Is this it?

Day 3: Still no answers. My kidneys weren’t improving, my body was puffed up like a water balloon, and Lynette was begging me to eat. But then, just past midnight, my night nurse shook me awake with some unexpected news. Thanks to my astute otolaryngologist and Lynette paying constant attention to my portal updates while consulting with my brother (a general practitioner) about the alarming results and putting the dots together, we finally had a diagnosis.

Matson and Larkin are now managing life with vasculitis after Larkin’s diagnosis.

The good news: It wasn’t cancer.

The less good news: It was something else rare and chronic: granulomatosis with polyangiitis (GPA), formerly known as Wegener’s granulomatosis. My immune system, in a grand display of betrayal, had been trying to kill me for months.

Day 4 and beyond were all about treatment — massive steroids, immune-blocking drugs, and a whole lot of “Let’s try not to let this happen again.” Meanwhile, Lynette, earning an honorary Google medical degree, uncovered a brand-new, FDA-approved treatment — Tavneos (avacopan) — specifically for GPA. By the time I was discharged 17 days later, we had a plan, a specialist, and a much better outlook.

Now, three years later, my lungs have healed, my kidney function is hovering between 20% and 23% (a solid D-minus in kidney performance, but I’ll take it), and I’m even walking 2 miles without issue. I’m back to work full time, remotely.

But while I dodged the cancer bullet, the road ahead isn’t exactly clear. With my kidney function hanging just above the critical threshold, I know a transplant is in my future. It’s a strange thing to plan for something that feels both distant and inevitable, but here we are. Until then, the goal is simple: keep my lone surviving kidney working as long as possible, stay ahead of the disease, and, if possible, avoid any more dramatic hospital stays.

Looking back, I know I was incredibly lucky. Lucky to have Lynette, who refused to accept dead ends. Lucky to have family and friends who held the pieces together when everything was falling apart. Lucky to have doctors who pivoted so fast they made history at MSKCC.

So, yes, this has been a hell of a journey. But I’m still here. And for that, I am endlessly grateful.

In recognition of Vasculitis Awareness Month in May, the ANCA Vasculitis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by vasculitis, written in their own words. Follow us on Facebook, Instagram, and X for more stories like this, using the hashtag #ANCASpotlight, or read the full series.