INSURANCE WARS: I wasn’t convinced that the Dark Side of the Force was real until I was introduced to Evil itself–insurance policies. After my doctor’s wrote out my order for the drug Trikafta, I waited a week to see if my specialty pharmacy had the Force to wrestle with my insurance company and obtain the glorious new drug. When it became clear that even the strongest Jedi were not capable of handling insurance, I stepped in and called to see what was the holdup–As it turns out, my insurance company secretly cancelled the order without informing me, my pharmacy, or my doctors. #FirstOrder
However, after putting in a series of pestering phone calls and messages to my insurance and CF prescribing team, my order was able to be covered in about two weeks.
SIDE NOTE: While I would’ve paid for the drug “out of pocket”, the only thing in my pockets are typically protein bar wrappers–the exchange rate of which rarely amount to the requisite $311,000 annually.
HOW DOES THIS DRUG GET INTO MY BODY?
While I was keeping my fingers crossed that the administration process would involve some sort of blue surrogate alien body floating in a liquid cylinder–unfortunately it does not. #NoPandora I don’t even have to give myself painful injections that would make me feel overly confident in my masculinity; I simply take pills 12 hours apart.
You’re probably saying to yourself, “Well that wasn’t nearly exciting enough to warrant a blog post.”
What if I told you that I had to take the pills with food?! Would that be exciting enough to compete with the Instagram update that just flashed on your phone saying that you got a new follower? Probably not. What if I told you that I can’t just take it with ANY type of food….. The food must have fat. Yep, that’s all–pills 12 hours apart taken with a fat-containing food.
Okay, I officially apologize for wasting your time. Sadly, technical details like this generally excite me more than social interaction #engineer
As usual, I feel extremely confident in offering my “keen” insight into a realm in which I have very little professional experience or expertise. #blogger
I’m writing this post before I’ve actually started Trikafta or Ivocafter, but here is what my doctors at Stanford told me to expect when starting the drug.
1) About 3 hours to 3 days after starting the drug, expect LOTS of coughing. The doctors relayed that many of the patients are coughing up “generous” amounts of mucus within the first week.
2) Expect to feel mildly ill for the first few weeks–Some of these symptoms could include headache, nausea, bloating, heartburn, sinus congestion, and skin rash. These side effects may ameliorate with time (as long as you can make it through the first few weeks) but be sure to be in regular contact with your physician to assess your status. #dontsue #readmydisclaimer
3) Expect for your experience to be unique. there is no one “universal” side effect that everyone has been experiencing. (other than an increase in lung function?) Due to the individual nature of genes and the drug, everyone’s body is responding differently!
So there’s my expert advice regarding something I know nothing about. Hopefully the doctors know something about the drug though–That way this blog post has some semblance some reliability. #TrustStanfordGeniuses
WHAT IS CYSTIC FIBROSIS ANYWAYS?
MY VERSION: Cystic fibrosis is a genetic disease that results in extremely sticky mucus (#impresiveboogers?). This sticky mucus has cascading effects on the lungs, pancreas, liver, reproductive organs, sinuses, and even sweat. That said, most people die from decreased lung function as bacteria finds home in the lungs and slowly brings down lung function (the body can’t clear it out because of the sticky mucus..bacteria really like our mucus). Yes, my sticky mucus has made me lots of friends.. Though not the “human” kind #bacteria
THE REAL VERSION: Mayo Clinic