Welp… now that the Cystic Fibrosis March Madness Bracket is over we can talk about some of the glaring issues that people have when living with CF.
That’s right! We’re living in the age of data and information collection, and your stuff has just been collected!
Just kidding… but I think we should look at some of the top results a little more closely. We’ll go through 10 of the terms that performed pretty well in the tournament for most annoying part of living with cystic fibrosis.
- Problem: Coughing
I talked a bit about coughing in the tournament recap blog, but I think we can all agree that it’s at the root of living with CF. The productive CF cough is, well, productive… and that’s what we need it to be!
Solution: Use your coughs for the purpose of clearing your chest. Coughing is a natural reaction to airway irritants. Our airways are irritated as shit. I know it’s annoying, but our bodies are telling us something. Utilize strategic coughs – huffs and active cycle of breathing. It’s okay to cough during exercise. Hell I cover a ton of ice with my greasy mucus whenever I’m playing hockey. It’s better out than in, after all. Have you ever thought of it this way… if you’re using your coughs to clear mucus from your chest, you may actually end up coughing less? Whenever I’m doing airway clearance I do it for as long as I need. Sometimes that’s 20 minutes twice a day, other times it’s 30-40 minutes 3-4x a day. Coughing is a frienemy.
- Problem: “You Don’t Look Sick”
This is an invisible illness thing. I think what irks people about this is that it’s invalidating. We spend a ton of time taking care of ourselves, yet when our hard work and effort goes unnoticed it could seem a bit offensive.
Solution: This is something I have very much been able to get past. Generally speaking I care very little about what people have to say or think about me. I know what I am doing/have done and that’s all that matters. That self-realization did not happen overnight. The school age years can be tough in this department, especially these days because everything we do is under a microscope. When that microscope seems to miss what we’re going through from an outside perspective, it can seem isolating. My solution here is for people to be willing to open up and let people inside their fights with CF. Be warned that not everyone will want to play a role in your support system, but you will find that the people who do want to be involved in your life will be the ones you call your best friends.
- Problem: Life Expectancy
Life Expectancy is another one that I’ve spoken about at length. It’s a bad statistic that is nothing more than an educated guess, yet it’s thrust in all our faces. We all know that we’re living with something incredibly deadly, and statistics show that we may not live nearly as long as the general population. You don’t have to remind us.
Solution: We need to figure out why we are using this statistic. Is it a marketing tool for fundraising? Yes. Is it a barometer for success in drug development? Yes. Is it useful to continue to remind patients about their shitty bounce in the genetic pool? No. Life Expectancy is not the appropriate way to talk to a kid about the severity of cystic fibrosis. It’s a marketing tool more than anything else. We need to get past it. It’s time we start talking about the specific needs of people living with cystic fibrosis. Let’s address those before we dive into the topic at large. This is a building blocks thing… we’re not going to magically make this illness go away overnight. Address smaller concerns, and build to larger ones.
- Problem: Daily Treatments
This is THE cystic fibrosis staple, I think. The daily treatments are nothing more than a mere Band-Aid keeping this incredibly delicate balance together. Without that Band-Aid, the whole thing goes to shit.
Solution: Similar to coughing, this one isn’t going away any time soon. We’ve kind of hit a weird point in CF care. As we develop more of an understanding of the disease and create more drugs, we essentially add on to our treatment routine – it’s getting longer. I can’t remember the last time I stopped a treatment because a new medication simply removed the problem in a single course. That’s an issue. I hope that as we progress further down the CFTR Modulator pipeline, some of the things that we have to do will lose their necessity, but that’ll be a pipedream until I can actually touch and feel that moment. For now, we have to see how our treatments are working, and that’s only when they are used consistently. Their effectiveness demands proper use. It’s like studying for a test, you’re really only going to get as much out of them as you put into them.
- Problem: Insurance Battles
The need for insurance for a chronic illness that we’re all born with is something that I struggle to wrap my head around. These fights are time consuming, stressful and generally end up in the same place – 10 letters and hours of headache later –something is resolved temporarily.
Solution: This is a multifaceted solution. First, CF Compass needs to start doing a better job. They are an amazing service, really something that has been needed for a long time, but they are severely underfunded and overworked. They struggle to keep up with the changing insurance rules and regulations and give patients unreasonable wait times. To their credit, this is a very new, groundbreaking service, but they need more support so that they can be the ones who deal with these insurance fights, not the patients. The insurance/reimbursement system, as a whole, though, needs to be nuked and reborn. The whole thing sucks. For people with genetic illness, like CF, we need to find a happy medium of state support and private funding – look at what we have in New York with the genetic illness assistance program. It works pretty well. Contrary to popular belief it actually pays to keep us alive – we are valuable assets. Not only in the eyes of pharmaceutical shareholders, but state revenue as well – companies pay taxes on what they earn from us… far more than what we generate in individual taxes. I’m not saying we need some sort of universal care – how many European countries are STILL without CFTR Modulator therapy, the Vest and other treatments that we use here in the states because the governments fail to pay for them? Besides, I sure as hell can’t justify my tax dollars going towards a lifelong smoker’s care. We need a happy medium. What if our healthcare expenditures, per person with CF, are our taxes? Wouldn’t that money funnel right back into the economy? Food for thought. Ultimately, I think this is something that needs to break free from the partisan barriers that have inflamed the entire world. Figure out what YOU need and advocate for that single thing outside the realm of other issues.
- Problem: Antibiotic Resistance
This isn’t even a problem. This is a goddamn crisis. Our antibiotic arsenal is running dry. We NEED to start looking at new ways to treat bacteria in the lungs while we wait for the development of new antibiotics.
Solution: Immunotherapy? Bacteriophages? What’s the answer? For some reason whenever a person talks to me about successful bacteriophage therapy, he or she is unable to form complete sentences and thoughts. It’s pretty weird. Is it alternative? Does it work? I’d like to find out. We need to get different ways of treating bacteria into the clinic. The Department of the Defense is jumping on board. If this problem is hot enough for them to take notice, then it’s time for the rest of us to pay attention. Until we have a new way to treat these bugs, we have to play our role too. I know a lot of us go around saying that we aren’t contagious, but the simple fact is that we are. We harbor some really nasty shit, and we have to play our part in infection control just like everyone else has to.
- Inconsistent Day-to-Day Health
If you’ve been living with CF long enough, then you know all about the good days and the bad. Things can be totally fine on Monday, but then once Tuesday rolls around you’re sitting in the ER coughing up blood into a cup while a team of doctors look at you like you’re an alien.
Solution: Stay productive. Productivity is the key to living through the inconsistencies of CF. I’ve always felt that my up’s and down’s are stress points for me, so I deal with them as I would any other symptom, and productivity is my answer. If I’m doing the very best that I can do each and every day to be a better person, whether it’s at work, learning something, being social, figuring out a problem, taking care of my health or anything in between, I know I am still living my life. Obviously that level of productivity changes with my health, but even the littlest bit goes a long way. I could be racked up on the couch for an entire weekend doing IV’s, but I’m still doing SOMETHING.
I hate this one. I talked about my inability to get a good night of sleep about a month ago. It seems like the one thing we need (all us of) is more rest, yet we just can’t quite seem to get it.
Solution: Find a way to wind down. I read almost every night before bed. I find that I sleep a lot better, or at least it’ll put me to sleep, whenever I’m reading – it’s just my go to method. It’ll be different for everyone. I think treatment sessions are stimulating, especially nebulized albuterol, so the physical act of going to sleep after treatments can be tough, and that’s why I try to wind down. Within the big picture, though, our bodies burn tons of energy fighting a losing battle with chronic infection on a daily basis – we’re working even when we think we’re resting, and that’s tiring. I think it comes down to being able to find your physical limit each day and deciding whether or not it’s a day to push that limit. Consistent exercise is essential, but overdoing it can be a huge step in the wrong direction. Finding the perfect rest/active balance is the answer here.
- Doctors and Nurses Unfamiliar with Cystic Fibrosis
I blogged about this last week. These kinds of interactions always suck.
Solution: I think the answer to this is expanded use of video medicine. We already have the framework for this to work in the age of hospital systems. Integrating CF care in larger medical decisions, or even within things that may not be related, can aid in the recovery process and ensure that we are making CF conscious decisions. Video, or telemedicine, can also improve the patient experience. The further you get from the East Coast, the larger the distance is between CF Centers. It’s insane that people have to travel upwards of even 90 minutes to get to their CF center, let alone 4 or 5 hours each way! Telemedicine could cut down on that commute – you’d just need some to administer a physical, relay all necessary info to a CF specialist on the other end of the Skype Call. On the nursing front, we’re rolling out a nursing education program at the BEF!
- Mucus Puke
The mucus puke is as uncomfortable as it is annoying. It’s hardly throwing up, but it’s certainly in the same family. It’s when a coughing fit triggers a small vomit-type reaction.
Solution: Part of me wants to say, just let it rip! But I don’t think that’d be very wise. Figure out why it’s happening and be prepared to act when it does. For me, an increase in mucus production during treatments is a sign that a pulmonary exacerbation is on the way. This is one of those things that falls into the “tell the doctor” category. Some people may think it’s gross, but I use a plastic cup as my spittoon during treatments and I’ve caught a fair number of mucus pukes in unfortunate Solo Cups. Work to thin the mucus how ever possible. The thick, sticky mucus is one of the OG cystic fibrosis symptoms, so you need to figure out how to remain clear. Work with the care team on getting the airway clearance that you need, exercise, stay active and be prepared!