A few weeks ago, Damon shared that his company had dropped him from their insurance. We knew it was a possibility. We just didn’t expect the timing — right after he’d been approved for a liver transplant.
Yesterday, the doctors told us they can’t continue supporting us on the transplant list until Damon has new insurance in place. The second we have it, they’ll pick it back up. It’s not a no. But it’s one more setback in a process that never seems to run out of them.
COBRA is an option for Damon, but it’s expensive. My work offers great insurance — so we looked into adding him there instead. That’s when I learned, again, a lesson this whole journey keeps teaching me: verify everything.
Verify Everything
My new plan listed Mayo Clinic as in-network. So I called Mayo Clinic to confirm. They told me the plan was not in-network.
That kicked off four business days of phone calls to HR, the insurance company, and Mayo Clinic. Back and forth, back and forth…and I still don’t have a straight answer. At one point, I was advised by the health plan to just sign up for the insurance, and then they’d check whether it was in-network.
Why We Can’t Fight This
Here’s the thing: we don’t have the luxury of taking a stand. We can’t fight the system on principle right now. We can’t risk a denial, we can’t pay out of pocket, and we don’t have time to spare. So, we’re moving forward with COBRA for Damon and adding the entire family to my work’s insurance, and hoping it sorts itself out the way we need it to.
What’s Actually On the Line
Because here’s why none of this can wait: Damon stays on the transplant list as long as his cancer doesn’t grow — as long as no new spots appear. If it does, he’s off the list until it stabilizes for at least six months. And that means (at least) six more months of chemo, slowly wearing down a body that’s already been asked to carry so much.
That’s what’s actually riding on a phone call between HR and an insurance rep. So I’m sharing this not to complain, but because I don’t think enough people know what this part of the process actually looks like. It’s not just the diagnosis, or the surgery, or the treatment. It’s hours on hold. It’s conflicting answers from three different companies. It’s a stack of letters from the insurance company that never seems to get smaller.
And it’s being told to gamble your husband’s spot on a transplant list on information nobody can confirm. Does that seem wrong to anyone else? Sign first, find out later — with a liver transplant on the line?
If you’re in the middle of something like this, I want you to hear this: it’s not you. The confusion, the runaround, the hours spent on hold getting different answers from different departments — none of that is a sign you’re doing something wrong. It’s the system, and far too many families are living this every day. My advice? Verify everything. Ask twice, and get it in writing whenever you can. But know that if this feels needlessly hard, that’s because it often is — and you deserve better than needlessly hard, especially right now.