Day 4 of #31DaysOfTré – Some CF Stats

For whatever reason, I'm fascinated with numbers and statistics, so this post is going to be some stats about CF to put things into a bit of a perspective.

Some numbers about the CF population

According to the CF Foundation, there are 30,000 Americans with CF and about 70,000 worldwide. From my own input, I think those numbers are probably larger in reality because, as we learn more about CF, diagnostic definitions are likely going to become more expansive, but I digress.

CF is considered a rare disease, but 30,000 Americans having it seems like a pretty large number, at least at first glance. 

By comparison, 70,000 people with CF across the world would be just short of filling the Georgia Dome to capacity.

30,000 American people with CF would barely fill InfoCision Stadium where the Akron Zips football team plays. 

Those aren't large amounts of people.

To inherit CF, both parents must be carriers. Across the United States (again according to the CF Foundation), more than 10 million Americans are carriers of a mutation of CF.

Based on the 2016 Census (city populations; not metropolitan), 10 million people is approximately equivalent to the populations of Los Angeles, Chicago, Houston, and San Jose combined. Again, that sounds like a lot, but not when considering the US is comprised of about 323 million people based on the 2016 census.

There are tons of other stats regarding different subpopulations of the CF community – rates of different mutations, patients affected by different clinical presentations, etc – but I feel as though those would detract from the overall point of this piece, but I'll probably delve into them in a future piece to demonstrate the overall heterogeneity of the population.

Some numbers on my life with CF directly

As I discussed in yesterday's piece, I take lots and lots of pills and spend a good amount of time doing treatments. I didn't get into too much of the detail because I wanted to spend some time on that today. 

I split the types of medication I take into two groups: my daily maintenance meds and my enzymes. The daily maintenance meds are the ones I take morning and night and my enzymes are the pancreatic enzymes I take every time I eat. I split them because the daily maintenance meds are taken exactly the same each day of the week, whereas my enzymes are taken dependent on how much I eat daily.

My morning medicines are the same on Monday, Wednesday, and Friday – my anti-inflammatory and vitamin D are only taken three times a week – and the same on Tuesday, Thursday, Saturday, and Sunday. My evening meds are the same every night.

Monday, Wednesday, Friday morning = 8 pills per.

Tuesday, Thursday, Saturday, and Sunday morning = 6 pills per.

Evening meds = 6 pills per. 

That's a total of 90 (non-enzyme) pills a week, which is 4,680 pills per 52-week year.

Since enzymes are taken depending on how much I eat a day, I calculated a range for those. On days I eat less, I assumed 3 meals – I take 5 enzymes with meals – and 3 snacks – 4 enzymes with snacks. On days where I workout more and eat more, I assume 4 meals and 5 snacks. That's a range of 27 to 40 enzymes a day. Over the course of a 52-week year, that's a range of 9,828 to 14,560 enzymes a year.

Together, that's a range of 14,508 to 19,240 total pills a year. That's a lot of pills.

That also doesn't include potential exacerbations where I have to take more oral antibiotics. Other patients have more or fewer medications they have to take, but for an adult with CF, I think this is a pretty fair approximation.

When I use the term treatments, I'm describing my chest physiotherapy and nebulized aerosols that I do twice daily. Since CF causes excessively thick mucus in the lungs, I do what's called the "vest" which inflates with air and percusses my chest to break that mucus up. I do this while I do three separate inhaled medications – hypertonic saline, pulmozyme, and an antibiotic that I cycle monthly.

When considering preparation time and the variable that depending on how I'm feeling I'll do longer or shorter treatments, I assumed a range of 30 to 60 minutes per treatment. I use two different protocols for the vest treatments – one is 24 minutes, the other is 30 minutes – and will sometimes do both if I feel like I need it. This gives us a range of 60 minutes to 120 minutes on treatments per day. This does not include if I have an exacerbation, in which case I'll do 3 treatments a day for 2-4 weeks, because I want to give a number for a "healthy" year.

Over the course of a 52-week year, that's a range of 21,840 to 43,680 minutes, which is equivalent to a range of about 15-30 days.

I've thought a lot about the heavy time burden of CF, but, until now, I've never calculated just how much time I spend adhering to therapies. A benefit of these treatments is that I try to spend them being "productive" by reading, writing, or, when I was in college, studying. But still, that's an insane amount of time just doing maintenance for my lungs. 

That also doesn't include the amount of time and energy spent exercising daily or preparing my medications for the week at the beginning of each week, which I usually prepare during treatments anyhow (I guess I'm better at multitasking than I thought lol).

When considering exercise too, you can add an extra 6-10 hours a week just spent exercising.

I'm nowhere near the most active CF patient ever, but I'm definitely proud of my compliance, adherence, and exercise regimen. Still gotta get better though!

I'd be remiss if I didn't acknowledge my incredible fortune in how rarely I am sick. I haven't required a hospitalization for IVs due to an exacerbation in 4 and a half years. So these numbers are incomplete. I'll also discuss this later, but my dad and I did a very rough calculation for Alyssa and she probably spent 20-25% of her life in the hospital. CF sucks a lot when you're healthy and is a horrible, horrible disease when you're sick that often.

I have a handful of other stats and numbers I want to look at, but I think it's important to fully consider this burden on CF patients. I try not to ask for pity when I write and I certainly try to never feel sorry for myself, but sometimes I think it's nice to take a step back and consider how CF is a full time job and give myself a pat on the back for how burdensome it truly is.