From the sofa to the sea: Riding the waves of vasculitis

Heather Fish takes in the fresh air of the coast after seeing improvements following treatment for her EGPA. (Photos courtesy of Heather Fish)

This is Heather Fish’s story:

It was a terrible time in so many ways. My husband had cancer in a place that meant he could no longer sit, stand, or walk. We were in the middle of the COVID-19 pandemic and the accompanying troubles that were imposed on so many. Then my health began deteriorating rapidly. The start of the big decline was December 2020.

For the previous two years, I’d had sinus problems, ear infections, Bell’s palsy, and weight loss. I was exhausted and had to cheerlead myself to get anything done. An emergency hospital admission showed granulomas in my lungs, but they were thought to be secondary to lung cancer at the time.

A biopsy revealed the presence of eosinophilic granulomatosis with polyangiitis (EGPA), and in the two weeks I was waiting for blood test results to confirm the diagnosis, I nearly died. The hospital saved my life that night after my sister took me in when my joints were affected and I couldn’t walk. It happened so quickly, from being unwell and waiting for the next step to losing the ability to function.

My treatments included cyclophosphamide, prednisolone, antibiotics, and an IV. I had multiple infections plus a lung abscess, and I couldn’t tolerate mycophenolate mofetil, so I was on steroids for many months. All this time, I was taking care of my husband, my love, until he died in August 2021.

Heather and Bob Fish snuggle on their 41st wedding anniversary in June 2021.

Grief was infused with illness, and I was like a slug on a sofa for a long time. Plus, the isolation of quarantine was challenging. I was also EGPA deaf, which intensified the sense of separation. Our daughters, who were also grieving, as well as other family members and friends were wonderful, and I am grateful for that, even though many interactions were remote.

Then came a game-changing treatment. I’ve been on it for more than two years now, and it’s given me my life back.

I still inevitably have challenges. I now have cataracts and osteoporosis from taking steroids for the past few years. I am deaf. I have some flare-ups, but not devastating ones.

Although the scarring in my lungs had been healing from the damage caused before my diagnosis, a recent fall and hip fracture due to inactivity during my rehabilitation allowed aspergillosis — an infection caused by a type of mold — to take hold. So I’m also being treated for that. And, of course, there’s the ongoing fatigue. While it has lessened considerably since I started treatment, it’s still part of my life.

Very slowly, I continue to move forward in the world, doing more things and making a small contribution to society through volunteering. I am a trustee of Mindfulness Wales here in the U.K., I teach a little mindfulness online, and last week, I performed poetry in public for the first time since before the COVID-19 lockdown.

Through it all, I feel the loss of my lovely husband, Bob. He is in my heart, of course, but I always wish he were by my side.

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.