The Burden of Care in the Life of a CF Patient

The Burden of Care in the Life of a CF Patient

A couple of months ago, I did back-of-the-envelope calculations on basic CF stats. Here’s what I asked: In a year, how much time do I spend doing treatments? How many pills do I take?

As I wrote last week, the spectrum of CF presentation is about as diverse as the number of patients in the community, so my numbers aren’t perfectly indicative of what every patient deals with. However, I do think they are decently representative of just how much “work” it takes to be a CF patient.

When I set out to calculate these numbers, I recognized that they’d probably dishearten me. As I wrote a couple of months ago, I don’t like comparing myself to adults without CF because it makes me feel different than everyone else, or abnormal. On the other hand, I think it’s important that others realize how hefty the burden of our care is since it affects who we are in so many ways.

So, to the numbers!

My daily meds are pancreatic enzymes, vitamin A, a multivitamin, Orkambi (lumacaftor/ivacaftor), ursodiol, and omeprazole. I also take azithromycin and vitamin D three times a week. Over the course of a week, I take 90 non-enzyme pills. For those of us who are pancreatic insufficient, enzymes help break down the macronutrients in consumed food so we can actually make use of them. My enzyme prescription is five with meals and three or four with snacks. I estimate I take between 27-40 a day. Over the course of a week, that’s between 189 and 280 enzymes. Stretched over an entire year, I take between 14,508 and 19,240 pills. I can’t fully comprehend those numbers — that is a huge number of pills.

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I was a bit more excited to calculate the amount of time spent doing treatments. The pill quantity is interesting because of the sheer numbers, but the bigger burden of care is the time invested in treatments. This entails time committed to sitting in a single spot (for the most part, as many patients use stationary vests and chest physiotherapy). Sure, it is possible to actively do other things during treatments (I’m writing this piece during a treatment!), but I think it’s important to recognize that this is a part of our daily routine that we don’t really have a choice to do or not.

For my vest therapy, I alternate between the Minnesota protocol and the standard protocol, depending on the available time and how I feel. I don’t generally notice if one makes me feel better than the other, but I have both settings saved as presets. These protocols are either 24 or 30 minutes long. During these treatments, I also take inhaled medications: albuterol, Pulmozyme (dornase alpha), hypertonic saline, and Cayston (aztreonam) or colistin (polymyxin E), alternated every 28 days.

I estimate that I spend between 30 and 60 minutes twice daily — 60 to 120 minutes a day — doing my treatments, including time for preparation and cleaning of my nebulizers. This calculates to between 420 and 840 minutes a week, or 7-12 hours. In a year, that is between 21,840 and 43,680 minutes, or 364 and 728 hours. Incredibly, this is between 15 and 30 days a year.

I want to be very clear that these numbers are not indicative of the entire CF community. For some, the numbers may be significantly more or less. Even for me, these numbers may not be indicative of every year. During years with more exacerbations, I take several courses of oral antibiotics, do more chest physiotherapy treatments, and spend far more time doing inhaled or intravenous antibiotics.

The CF community is told how important adherence is. It is critically important and I’m absolutely not dismissing that! But when you consider we spend almost an entire month of each year doing the most basic part of our regimen just to stay stable, it’s easy to get overwhelmed.

To those with CF: I’m with you, and we’re all in this together. It won’t always be easy. It’s hard some days, but we have to do our best to take care of ourselves.

To those without CF: Don’t pity us for our treatments. We all have tribulations. All I ask is that you recognize the effort and time that goes into our lives due to something out of our control, and maybe, use that as a lesson in empathy.

Follow along with my other writings on my humbly named site, www.trelarosa.com.

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