Tuesday, February 13, 2018

I write this in the quiet dark of my family room—a clock ticking rhythmically on the wall, my husband and daughter sleeping down the hallway. I write this with tears in my eyes.

This afternoon, Vertex Pharmaceuticals announced that the FDA has approved their third drug to treat cystic fibrosis, Symdeko. This drug is supposed to bring even greater health increases than my miracle pill, Kalydeco.

As I read the news tonight, all I could think of was my friend Kristi.

I met Kristi years ago, when Kate was a newborn. We met in a group for mothers with cystic fibrosis, and bonded quickly over the unusual fact that we were two of the first women in the world to have been pregnant on the then-brand-new CF drug, Kalydeco. Our babies were weeks apart. We called them the Kalydeco twins.

For years, we kept in touch—often daily—as our daughters grew, both of them spitfires with iron wills and mischief in their hearts. We talked about the unique difficulties of CF motherhood; the peculiar situation of starting Kalydeco as adults; the way our disease kept creeping in despite that miracle.

We talked about the trials for the drug that's now called Symdeko.

Kristi was so excited about it. 2015 had been a difficult year for her, and she told me that maybe down the road, when she could start the new drug, it would be the thing to make a difference for her. Enough difference to keep her out of the hospital, home with her little girl.

We had the same genetic mutations, Kristi and I. The same history of infertility. The same miraculous conception story. The same spirited daughters. We even cultured many of the same bacteria in our lungs. She was one of my best friends, one of the people that I went to first when I had an observation to make or needed to vent to somebody about the CF life.

Somehow, I made it all the way into adulthood before a close friend died of my disease. It's unusual, going that long; for years, it felt like it was hovering out there somewhere, a stark inevitably that I didn't want to face. I had close friends decline, go on the transplant list, live on ventilators, barely alive. I always assumed that that would be what happened: that someday, I would have a dear friend slip away by degrees. But it never happened. Each of my friends rallied, each of my friends got their transplant. All of those friends still live, still thrive.

Instead, it was Kristi who died. In a few shocking minutes, out of the blue and with almost no warning, one spring evening in 2016. I didn't believe the news at first. She hadn't been sick enough; she hadn't followed the pattern of a cystic fibrosis death. And yet, it was true.

One minute she was there. Then gone.
Even now, nearly two years later, I find myself every now and then about to reach for my phone, wanting to tell Kristi something about my day. Something that only she would uniquely understand.

I feel that pull tonight. I read the press release, and I want so badly to call her up, to ask her how soon she plans to ask her doctor for the prescription, to ask her if she's excited, nervous, ready. I so badly want Symdeko to be the thing that makes the difference, just like she hoped it would be.

It's strange, the way someone who's been gone for years can still feel like such a present and vital part of your life, of yourself. It's strange, the way that brings almost equal parts pain and gratitude.

Someday, when I get switched from Kalydeco to Symdeko, one thing is certain:

I'll be thinking of Kristi as I swallow that pill.

No comments:

Post a Comment