While in recovery, I’m letting myself binge episodes of Below Deck, a wildly entertaining show about superyachting where the staff are ridiculously good looking and the guests are either appreciative or completely over-the-top entitled.
I also wanted to share a quick health update. My nephrectomy is scheduled for tomorrow at 7:30 AM, so by the time you read this, it may already be done.
Now, after many medical challenges, my view of discipline has shifted completely. It’s no longer about rigidity or over-control—it’s about adapting to an ever-changing reality.
For me, it has been hard to maintain identity and self in so many circumstances… But maintaining identity is even harder when faced with sickness, pain, and physical limitations. I never knew I could be tested to this degree.
During a late-night MRI while I was in the hospital, I had a vivid visualization of my grandfather — the person my son is named after — coming to guide me.
I’m still meeting with specialists regarding my rare disease — and the search for answers continues to be confusing. I recently met with a nephrologist at Johns Hopkins who specializes in aHUS. While the hematologist I saw at Georgetown believed I had the disease, this specialist disagrees.
So — is this bad news? Yes. I’m disappointed that my new kidney is officially dead. It was a huge sacrifice on Brad’s part, my donor, and I loved the energy and zest I felt for those nine weeks. Is it good news? Weirdly, also yes. My native kidneys are holding on.
Thankfully, one of my nephrologists took my concerns seriously. He re-reviewed the genetic test and looked into other autoimmune causes. That’s how he came to diagnose me with aHUS.
Maybe not every hardship needs to be turned into a narrative of growth. Maybe some of it just is. Sometimes it just fcking sucks, and it’s just part of being human.
My deepest prayer is to get better and return to the work I love — sharing my story, saving lives, and building communities again. But I’m learning to trust that, like Suleika Jaouad, I can write through the pain and, when the clouds part, shape my thoughts into something lasting: a memoir for Barney that tells him who I am, what I’ve loved, what I’ve struggled with, and what I believe in.