Tuesday, November 11, 2014

The "If only" game

Yesterday, I got caught up in the game of "if only". Unfortunately, that's not a good place to be. My mom went to a CF update with Dr. Campbell, who is the executive medical director of the Cystic Fibrosis Foundation. Basically, he's a big shot in CF research, and he knows all there is to be known about where research stands. He had a lot of interesting points that were extremely exciting to hear! However, after hearing my mom's summary of Dr. Campbell's talk, I came away thinking, "If only I was born 20 years later". The life expectancy of a baby born with CF today with the current medications, not even with Kalydeco or the other exciting medicines on the horizon that could address the root problem of CF, is 56. That's 20+ years longer than the life expectancy was for a baby born with CF in 1992, the year I was born. The hope is that with the new medications, the life expectancy for a person born with CF will soon be 86, which is basically the same as the life expectancy of a "normal" person. I found myself getting caught up in wishing I had been born later. Obviously, research has come a long way from when, in 1956, people born with cystic fibrosis were not expected to live long enough to attend elementary school, but we haven't found a cure yet. We have medicines to help lessen symptoms, but we don't have answers as to how to fix the genetic mutation. We have just touched the surface of medicines that address the problem of cystic fibrosis instead of just alleviating the suffering, but we have a significant amount of unknowns in our equations.

After I dwelt on the "if only I was born later" scenario, I felt God (figuratively) slap me upside the head. Yes, my life expectancy would be longer if I had been born later in time, but life expectancy is just a number. Science isn't going to tell me how long I'm going to live on earth. Only God knows the number of days I am given. Who knows--I could kick life expectancy's butt and live significantly longer than "expected", or I could die from a cause other than cystic fibrosis. Who am I to worry about how many days I have left? That is God's business, and I trust Him to handle it. As for me, I know I was born in a specific time with a specific sphere of influence in a specific place for a specific purpose. My job is to use my passions and gifts to glorify God and serve Him well. As well, if I were born at a different time, I wouldn't have the amazing friends and family around me that I have today. I know that they were placed in my life to encourage me, challenge me, push me, and lift me up, and I pray that I am the same kind of support to them. I am extremely blessed.

After a little while, I got lost in another "if only" scenario--If only I had been born with two copies of the dF508 mutation or the G551d mutation. The cystic fibrosis patients with the G551d mutation can already receive Kalydeco, which has drastically changed their lives. Many of them have received huge bumps in their pulmonary lung function tests, have significantly less lung exacerbations, have gained and maintained healthy weights, and are overall extremely healthy. Their lives have completely changed. Patients that are homozygous dF508 (they have two copies of the dF508 mutation) are going to be the next group of patients to receive these life changing drugs. Many people have dF508 mutation, so it made sense to work on fixing the root of the problem in patients with two copies of dF508 next. If the FDA approves the medicines (which they should), then patients with homozygous dF508 should be able to receive medication by April of 2015. THAT'S 5 MONTHS AWAY. These patients could begin to see awesome improvements in their health in 5 months! How incredible is that?! However, this treatment cannot be extended to heterozygous dF508 patients yet (they only have one copy of the dF508 mutation). I have one copy of the dF508 mutation and one rare mutation, V520F, so I cannot benefit from treatment yet. The Cystic Fibrosis Foundation's goal is to have the first generation of medicines for heterozygous dF508 patients by 2016 and the second generation (better medications) by 2021. Granted, that's not far away, either. 2016 is only two years away, and 2021 is only 7 years away. I'll be 23 and 28, respectively. But I'm impatient, hence where the "if only" situation comes into play. I want to feel normal. I want to be healthy. I want to be able to run without feeling the ache in my lungs and have no concerns for fitting in treatments and not have to worry about scheduling a course of IV medication. Yet I'm not to that point yet. And I have got to stay as healthy as possible until I am to that place.

I began to come out of my "if only" scenario when I began to focus on the facts; I cannot change the mutations I have, nor would I want to. I wouldn't be me without my specific cystic fibrosis story. I'm always a weird case, I keep people on their toes, people never know what to expect from my health--and that's okay. I can wait a few more years to receive medication. Until then, I will continue to remain compliant and take care of my health, as well as raise money for the cystic fibrosis foundation so they can keep working on finding and improving medications for CF patients!

Thankfully, I didn't dwell in the "if only"s for a very long time. God snapped me out of it pretty quickly, and I began instead to rejoice at the hard work of dedicated scientists and the exciting findings of cystic fibrosis research. Every day, we get one step closer to a cure!

Patience, dear friends...........

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