A quick Monday Morning for you… I’m off to New Hampshire for a BEF Fundraiser!
My Go-To Anti-Inflammatory
Inflammation is such a big problem in cystic fibrosis that there are people out there who think CF is part autoimmune disease. The jury is still out on that, I suppose. What we do know, however, is that inflammation does exist in a big way. Let’s simplify things. Many of us have nasty chronic infections living in our lungs. To deal with it (the natural way), the body sends in an army of white blood cells to fight the bacteria. The white blood cells never win the fight, which is why we use an array of antibiotics. Think of the white blood cells as the ground force and the antibiotics as the Air Force that turns the tide of battle against the bacteria in our lungs. Together they do a decent job. Consider anytime you’ve (or your kid) used IV therapy. Your WBC count usually goes down after a successful course. The presence of white blood cells alone, however, creates a nasty situation inside our body and often leads to lung scarring (fibrosis).
As it would turn out, cystic fibrosis is actually describing what happens inside our bodies, it’s not just some random name.
All of this sort of leads to a never ending state of inflammation, which is the body’s natural immune response to an issue. It’s a bit more complex than my little analogy, but it’ll play for Monday morning. So in CF, we need a way to tell our White Blood Cells to chill the f*ck out, otherwise we end up with lots and lots of lung tissue scarring over (fibrosis). Lung scarring is BAD because we then lose the ability to regain the functionality after we hopefully clear an infection or start on a CFTR Modulator. To help fight this problem I take NAC or n-acetylcysteine. NAC has actually been studied in cystic fibrosis but it was done long ago in the days when all we cared about was PFT scores, so the results were a bit ehhh, but NAC is still widely used in CF (especially in Europe), has shown some success in other respiratory illnesses, and I love it. These days we also look at quality of life – pulmonary exacerbations, less antibiotic use, etc. – in studies, so I’d really love for this to be comprehensively studied again under our current understanding of CF. NAC is OTC and is taken as a dissolvable tablet in a glass of water. I get PharmaNAC on the Internet. Amazon has everything. I love the way NAC works. I notice I have less chest tightness and mucus production. Both are things that I consider significant positives. I’m also less reliant on Aleve. Ultimately if you feel like you are an inflamed CF patient, talk to your doctor about some options, and if you want to feel confident about directing a conversation about inflammation, remember to bring up NAC.
Try To Be a Realist
I think we live in a world where everything is so sensationalized, which can be quite concerning in the chronic illness community. We are constantly exposed to pre-determined, self-selected messages. What I mean by that is the things we see on the news, social media, etc. are designed to evoke emotional responses. Social media, specifically, never tells the full story. We see people smiling, laughing with their friends, having a good time, and occasionally a “raw inside look.” Whatever that means. People have full control of their reputation via social media, which is why we love it so much. We choose the information that people know about us over Instagram, Facebook, Twitter, etc. Lets take chronic illness Instagram influencers, for example. It’s unrealistic to think we call all be like them – the fit, beautiful workout warriors who use exercise, and only exercise, to battle CF. I have news for you… exercise isn’t going to conquer multidrug resistant staphylococcus aureus. We see people conquering CF in very unrealistic ways. Hell… they’re influencing us. Sure people serve as motivators and inspiration for us, and that’s amazing, but we need to remember that CF care is different patient-to-patient. We know that the genetic diversity in our community is wide, and we are even learning more and more about secondary genes, which may also have an impact on disease prognosis. If you’re not healthy enough to get out on the track and run 10 miles, that’s okay! You have cystic fibrosis, and so do I… I sure as hell can’t run 10 miles, and I’m totally fine with it. I look for things I can do, and so should you! Maintain realistic goals.
Happy Father’s Day!
I’d like to say a quick Happy Father’s Day to my dad and all the strong willed men who are raising little ones with cystic fibrosis to have pride in their accomplishments, honor in their decisions and resilience in the face of adversity. ALSO… a very special Happy Father’s Day to the men living with cystic fibrosis who have overcome the odds to become dad’s themselves!
…and that’s what I’m thinking about this morning.