How I Outlived Every Cardiac Sarcoidosis Statistic (And Confused My Doctors in the Process)

I recently got an email from a reader who had just been diagnosed with cardiac sarcoidosis. He was terrified—understandably so—and he’d stumbled across one of those cheery medical statistics that claims people like us have a five-year lifespan. Then he asked me the question no one actually wants answered: “How long did your doctors give you to live?”

Well. Pull up a chair.

First of all: I’m sorry you’re dealing with sarcoidosis at all. A chronic illness diagnosis is one thing, but a chronic illness that no one can explain, cure, or even confidently predict? That’s a special kind of mental gymnastics. It shakes your world, like someone suddenly rearranged the furniture of your life and turned off the lights. But the good news—yes, there is some—is that while sarcoidosis isn’t curable, it is manageable. Sometimes badly, sometimes beautifully, but always manageably.

Now, about that five-year statistic. I’ve seen versions of it floating around, usually in the same corners of the internet where hope goes to die. I’ve also seen the one that says cardiac sarcoidosis accounts for 77% of sarcoidosis-related deaths and that only half of us make it to the ten-year mark. These numbers aren’t comforting. They’re not supposed to be. They’re averages based on people we don’t know, with circumstances we don’t share, who lived in bodies that aren’t ours.

Back in the day, I also had pulmonary hypertension—a fun little bonus round in the chronic illness Olympics. According to the stats, pulmonary hypertension plus heart failure equals a five-year lifespan. Add pulmonary sarcoidosis and a leaky PFO closure and apparently I was either supposed to die yesterday or tomorrow morning before breakfast. Except… I didn’t. And here’s the plot twist: my pulmonary hypertension reversed. On its own. With no explanation. My doctors are still blinking at my chart like it’s a magic trick.

This is why I don’t live by statistics. Statistics are the average speed limit on a highway. Sure, the sign says 55 MPH, but you’ve seen people putting along at 35, and others flying by at 85 with a latte in one hand and life insurance in the other. Averages don’t predict individuals. Numbers don’t write your ending.

When I first got my ICD, my heart failure specialist told me I’d need a heart transplant. Two years later, my sarcoidosis specialist announced I’d probably need both a heart and lung transplant. Yet here I am, two ICD replacements and twenty years of sarcoidosis later, still using the same original organs (minus a tiny bone in my little toe, but that escapade is for another day). My ejection fraction once sat at 20–25%. Eighteen months later it climbed to 30–35%. Last month it hit 45%. My doctors remain confused, and honestly, I love that for them.

Being diagnosed with cardiac sarcoidosis isn’t a death sentence—it’s a living sentence. It forces you into the present moment and dares you to actually appreciate it. The past can’t be altered, the future can’t be predicted, and Googling “sarcoidosis life expectancy” at 2 a.m. never made anyone healthier or happier.

And yes, I still have days when I feel like warmed-over roadkill. I still talk to my sarcoidosis like it’s an annoying roommate: “Oh, you’re acting up today? Great. Fine. I’ll take a nap and let you calm your nonsense.” Fighting your body doesn’t always work. Sometimes the trick is learning how to live with it, understand it, negotiate with it like a moody teenager.

A final thing, dear reader: don’t drown yourself in every sarcoidosis website or dire message board. Some of them are full of misinformation, outdated studies, or just raw fear. As Sarah Brightman sings, “Not every boat you come across is one that you have to take.” Sometimes the best thing you can do is stand still and breathe.

I hope your journey is long, peaceful, and full of moments that surprise even your doctors. May your strength outpace your fear, and may every new challenge come with the clarity and calm you need to meet it.

My very best to you.

If this resonated with you—or if you’ve also outlived a statistic or confused a specialist—drop a comment below or subscribe for more stories like this. Your voice helps our chronic illness community grow.