Trikafta: Six Months Later

Six months ago today, I stood in my office (who even remembers what that feels like these days? LOL), anxious, eager and cautiously optimistic to find out what this box and the little pills inside would do for me. This medication was an answered prayer for so many. It was a miracle drug that many had waited for their entire lives. Personally, I was one of the lucky ones because this was not the first miracle drug I was able to take. The truth is my first miracle happened almost five years ago when the FDA approved Orkambi in July 2015.

Prior to Orkambi, I was admitted to the hospital on average 4-5 per year. Since starting Orkambi in August 2015, I’ve been hospitalized three times total. Three times. In five years. To me, this was more than enough. I didn’t care that my lung function hadn’t gone up, I didn’t care that I didn’t gain weight. I just relished in the fact that I finally had the chance to live something that more closely resembled a “normal life”. I cherished that I didn’t constantly feel sick and that I didn’t repeatedly have to put my life on hold to go spend two weeks in the hospital every couple months. What Orkambi did for me was life changing and I couldn’t imagine how it could get any better. Man was I wrong...

Last November, I started Trikafta, the newest and best CFTR modulator developed by Vertex Pharmaceuticals to treat the underlying cause of cystic fibrosis, and once again, my life changed in ways I couldn’t even fathom. 

Quarantine Thoughts from A (High Risk/Chronically Ill) Woman Living Alone

Today started out like most other days. I woke up, started a pot of coffee, took my two dogs, Teddy and Benji, out for a walk and then made the very long 8ft commute from my living room to my guest bedroom to start (tele)working. A few Zoom calls later, a familiar bing came from the news app on my iPhone. I needed a fresh cup of coffee anyway, so as I stood up to walk to the kitchen, I picked up the phone to check, wondering what depressing and/or highly politically tinged headline would show up on my screen. To my surprise, the words that lit up had nothing to do with Trump, stimulus payments, or the CDC. The headline didn't remind me of the incredible sacrifices our medical professionals are making right now or the growing case numbers/death rates. 

Instead, a banner that read "The Washington Post: A Woman Living Alone" stopped me in my tracks.

I was intrigued and clicked to read more. The text that followed was a column that featured seven women living alone during the coronavirus pandemic. Being a single, 28 year old woman, currently living alone during the coronavirus pandemic, I found myself immersed in the stories of women experiencing many of the same emotions I've battled with over the last month and a half.

The column started by explaining that the last time the U.S. faced something like coronavirus — the 1918 flu pandemic — the majority of women were married by age 21 and went straight from living with their parents, to with their husbands. A few spent time in boardinghouses with other women, but they never lived alone. Today, 23.5 million American women live alone. Most, however, are far from lonely. Women without partners or roommates "have triumphed by developing strong social networks,” and they "invest in their hobbies and maintain friendships; building connections with other people more effectively than men." A fact I wholeheartedly agreed with as I reflected on my own life.

Post COVID-19, the networks these women have built for themselves appear very different. The author compares it to a cold water bath that "removes almost all the advantages of living alone and amplifies all the hard parts." As I read the stories of these women, I found many similarities between my own life and theirs.