🩺 The Truth About Life After Hospice: Surviving Isn’t the Same as Healing

Some stories don’t end. They evolve—with every scar, every stumble, and every ounce of strength it takes to keep going.

t’s strange what happens when you “beat the odds.” When you walk out of hospice, or survive something that was supposed to take you out, people start assuming you're fine now. Stronger. Healthier. Past the worst of it. They look at you like you’ve crossed some finish line. Like the miracle means the mess is behind you.

I totally get that! I really do. From the outside, it does look like a happy ending. I’m no longer in hospice. I had a groundbreaking procedure. I can breathe better. I’m alive. But survival doesn’t magically erase chronic illness, or undo years of damage, or stop the daily management that never lets up.

And to be honest, I started to believe it too. I wanted to believe it. After so much loss, so many hospital stays, and living with the reality of a “you-might-not-make-it” diagnosis, it felt good to focus on hope instead of hardship. So I leaned into the progress. I celebrated the milestones. I stopped talking about the symptoms that lingered… because I didn’t want to dampen the miracle.

But the truth? The miracle didn’t make me invincible. It made me grateful—but still vulnerable.

This latest health episode hit me hard. It reminded me—loud and clear—that I’m still walking a tightrope. I’m living with AFib and AFlutter, that throw off the way my heart beats. Add in congestive heart failure, and my heart’s already working overtime just to keep up.

But what most people don’t see is the silent storm underneath it all—fibrosing mediastinitis. It’s rare, aggressive, and presses on the very structures my heart and lungs need to function. It doesn’t show up with warning signs. It sneaks in, causes damage, and complicates everything.

So no, I’m not “all better.” I’m still here. Still standing. But let’s be honest—this isn’t recovery. It’s a balancing act. And some days, it takes everything I’ve got just to stay upright. Every step, every breath, every plan I make—it all comes with a mental scan of: How much energy do I really have today?

Hospice wasn’t the end. It was just a chapter. A brutal one, yes—but not the whole story.

I’m still waking up every day asking myself: How much do I have to give today? I still track every symptom, pace every activity, and carry the invisible weight of a heart that doesn’t always cooperate.

And honestly? I think I forgot that for a while. I got caught up in “Look how far I’ve come,” and didn’t leave space for, “Here’s where I still am.” But this latest scare forced me to sit down—physically and emotionally—and face the truth:

Survival isn’t the end of the story—it’s the first breath after nearly drowning.

It’s waking up with a heartbeat you weren’t sure you’d still have… and realizing the real fight is just beginning. Not the loud, dramatic one that brought you here. But the quiet kind—the kind that lives in doctor’s offices, on lonely afternoons, and in the gap between what people think healing looks like… and what it actually is.

I’m not sharing this for pity. I’m sharing it for the ones who are still in it.

If that’s you—if you’re living in that weird, in-between space—just know:

👉 You’re not crazy for still struggling.

👉 You’re not weak because your healing doesn’t look like a Hallmark movie.

👉 You’re not broken because your “after” feels messy.

You’re surviving. You’re figuring it out. You’re still here.

And that? That’s strength most people will never understand❤️‍🩹

Today, I’m choosing honesty over performance. I’m reminding myself—and maybe you—that being a survivor doesn’t mean I’m invincible. It just means I keep showing up. Even when it’s hard.

Especially when it’s hard.

That’s why I keep showing up. That’s why I speak up. Because healing isn’t a straight line—and people like me don’t just need support during the crisis. We need it every single day after. This is what survivorship really looks like. Messy, unfiltered, and absolutely worth fighting for.

🫀 If this hits home for you—or someone you love—don’t scroll past it. Share it. Start the conversation. Ask questions. Because the more we talk about what comes after survival, the more we make space for real healing to begin.

Thanks for walking this road with me❤️‍🩹🥑

#Heart2HeartTalk #HospiceSurvivor #StillStanding #HealingOutLoud #TricuspidValveMiracle #PatientVoiceMatters #FromPatientToAdvocate