So much has happened since my post.
If you read my previous post, you know that the the FDA approved the new CF medication for use in CF patients with at least on copy of a particular gene mutation. Known as “the triple combo” in CF circles and formally named “Trikafta”, it is designed to help up to 90% of CF patients.
The CF world has been waiting for this news, which was announced months before anyone expected. Since then, I have read dozens of stories by CF patients taking Trikafta that it is as close to a miracle as possible, without being a cure.
I began to read more and more social media posts using phrases like “life changing” and “second chance”. So my medical team submitted my prescription, and we were met with a swift “no”.
The insurance company was denying patients based on a “6 month wait period”, regardless of the patient’s need, or the medication’s presumed benefits.
Three Weeks Ago
I didn’t think much of it, because I had complete faith the decision would be overturned quickly.
As I was finishing my 3-week course of antibiotics, I was enjoying the most productive and energetic week I’ve experienced in at least a year. I achieved many small victories – I made it to all of my doctor and lab appointments, got to have a nice lunch out with Ken, had a movie date, and got my hair done (it had been 5 months). I also had begun Pilates again, achieving 4 days in a row.
That Saturday morning, I was up at 7am, cleaned the kitchen, ran laundry, and brewed a pot of coffee.
Ken had somewhere to go that afternoon, so I figured I would spend that time resting from all of my activity.
And then it hit me. Four days after finishing antibiotics, I spiked a fever and started going downhill. By the next morning, I needed 3 liters of Oxygen and had a 102.9 fever. i was becoming powerless over my lung infections, especially MRSA.
A few days later, I was admitted back into the hospital – only 6 weeks after my last hospitalization.
One Week Ago
Fast forward to last week. i spent 14 days on several antibiotics and very close observation. Doctors were stunned that I got so sick so frequently. We agreed on a basic plan, part of that including Trikafta.
I was discharged on my 48th birthday, just 2 days before my favorite holiday – Thanksgiving. I had been sent home to continue my antibiotics. We also scheduled sinus surgery for the beginning of the year, and a plan for suppressive therapy.
I was also neck-deep in appeals for my insurance to cover the new CF drug, Trikafta. My CF team and I had been fighting for five weeks to get insurance to cover it. Even my patient rep at Vertex, Trikafta’s manufacturer, was trying to push things through.
My Favorite Day of the Year
Amazingly, I was able to actually attend my sister’s Thanksgiving dinner – my first family holiday since last Thanksgiving.
I also have been able to cuddle with my babies while recovering from my hospitalization. It takes a while to regain strength after such a rigorous treatment regimen.
Meanwhile, I wondered how Tuesday’s fourth appeal would work out.
Six Days Ago
Imagine how dejected I was when the very next day, Friday, I received my fourth rejection letter.
Three Days Ago
And then everything changed.
Monday morning, my clinic called me to tell me that my insurance had changed their decision over the weekend, and that I was finally approved!
Tuesday, the specialty pharmacy called me to set up delivery, and on Wednesday afternoon, it arrived via Fedex.
The Start of a Second Chance
Today, I take my first dose of Trikafta. So many people played a role in this victory and literal second chance at life.
I am eternally grateful to God for guiding the minds and hearts of every person involved…
… on the clinical side, from scientists to researchers to doctors and nurses and pharmacists, my entire CF team, and my fellow CF patients who participated in clinical trials.
… on the personal side, from family and friends who encourage me, lift me up, and who know just what will lighten a heavy load (Snapple! Captains! Turkey!)
… and my forever love, Ken, who every day puts me first, who supports me and how I want to manage my CF, to working so hard and keeping us insured, for doing triple duty, to FaceTiming with him and my kitties every morning and bedtime when I am inpatient (63 days in the past 11 months).
There is also someone whose name I cannot share, but this very dedicated person will forever have my gratitude for the role they played behind the scenes.
Sometimes, miracles require a village – and I feel so incredibly loved and blessed to have mine.