Unstoppable: Sarah’s journey from coma to altar and beyond

_“I was about 25 years old when I first started having breathing issues. It started gradually. I’d find myself out of breath while doing things that had once been easy for me. I remember thinking to myself, ‘Wow, I must be really out of shape.’

It wasn’t until I was back home for Christmas in 2015 that I realized how bad it had gotten. My sisters, one of whom is a doctor and the other of whom is a naturopath, found me doubled over halfway up the stairs of our childhood home, just wheezing and suffering.

‘What’s wrong with you?’ they asked me, with the bluntness you can only get from siblings.

‘I think I just ate too much Christmas dinner,’ I told them.

But they could tell immediately that it was something more serious. They rushed me straight to the hospital. I’m so grateful to them, because otherwise I could have kept ignoring my condition for who knows how long. It could have gotten much worse.

There was a granuloma — a non-cancerous mass of scar tissue and white blood cells — growing in my respiratory tract, severely restricting my ability to breathe. I had — and still have — a rare and severe form of ANCA vasculitis known as granulomatosis with polyangiitis (GPA). Basically, my immune system is so overactive that it attacks my own blood vessels, resulting in these granulomas. It can be a difficult disease to diagnose because it’s not hereditary, and it can affect any organ. For me, it’s almost entirely confined to my airways, slowly taking away my ability to breathe, suffocating me.

And, unfortunately, they couldn’t simply remove the granuloma, because cutting into it would just cause more white blood cells to react. They were, however, able to surgically widen the airways in my lungs so that I could breathe again. And with treatment, it’s possible to reduce or block inflammation to help control the disease.

In the lead-up to my wedding, I’d known I was going to need another surgery. I need one every couple of years, and I’d come to think of them as routine. But, while I was recovering from the latest surgery at my parents’ house, all of a sudden I found myself on my hands and knees unable to breathe. I was rushed to the ER and everything happened very quickly from there.

“10 days before my wedding, I was in a medically induced coma. When I woke up I was confused, I couldn’t walk, and I could barely speak.”

But four days later, thanks to the incredible support of my healthcare team, I was walking down the aisle to meet my fiancé Jim at the altar, right on schedule. Jim had said he’d push me down the aisle in a wheelchair if he needed to, but I’d been practicing walking 10 steps at a time with my dad, and we were able to make it.

It was a huge personal victory for me that Jim and I were able to have the wedding we had planned and dreamed of. But this condition is always bringing new challenges, new battles.

When you’ve lived with a disease like this for long enough you learn to recognize your limits. But it’s very difficult to explain that to others when my illness is so invisible most of the time. I carry a lot of guilt related to the pain and difficulty with my disease. But I also have a new and lasting appreciation for life. I have become much more grateful for each breath I get to breathe without a struggle, and I’ll never stop being thankful for it.

This is part of why I try to share my story, and why I’m active in the ANCA vasculitis community. I want to help others learn from my experience and learn to balance their limits and work with their medical team. But I also want to encourage people, more than anything, to listen to themselves and take control of their own lives with this disease. To not let go of their goals. 

Today, Jim and I are talking about family planning, hoping to add a new member to our team, which involves a lot of discussions with doctors about risk. My ANCA vasculitis story didn’t end with the wedding, as storybook as that scene may be. My life carries on, and I still have severe GPA. It’s something I have to think about and manage as I navigate my career, my relationships, and my future.”

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This initiative was supported by Otsuka Pharmaceutical.