As a kid with CF, I was lucky in that I had heartburn rarely enough that regular use of antacids or PPIs (proton pump inhibitors) was not offered to me by my parents or doctors, so I never developed a dependence on them. But it seems such things are often suggested to CF patients as part of a standard CF routine. Due to a number of factors common in the CF lifestyle (poor diet, frequent antibiotic usage, stress, coughing, etc.) acid reflux, heartburn, and gastroesophageal reflux disease (GERD) are commonplace in the CF population. Yet mainstream medicine understands the problem entirely wrong, and so their standard treatment protocol ends up exacerbating the issue and causing more problems than you started with. I want to briefly discuss why antacids and PPIs are inappropriate for CF (and humans in general) and some alternatives to these pharmaceutical treatments for reflux.
Since about 2013, a portion of the CF community has been experimenting with "the Combo", or the combination of curcumin plus genistein supplements to help modulate CFTR function. This intervention is proving to be very helpful for many people who try it, yet we're still in the beginning stages of our experimentation. The impacts of the Combo are somewhat mutation-specific, and the rate of digestive absorption of these herbs varies person to person, thus the dose must be deduced via personal experimentation.
The Combo is a simple and safe intervention with few side effects and is relatively cheap (compared to pharmaceutical CFTR modulators like Kalydeco, which cost $300,000 a year!). Both of these supplements are made up of plant constituents (genistein from soy and curcumin from turmeric root), and as you know, I'm an herbalist and a believer in the healing power of plants.
On occasion one must do strange things in the name of science. Sometimes it's necessary to challenge a few taboos to find useful information. There's hardly a body part with more taboos attached to it than the bung-hole. Oh yes, my friend. I'm going there. Let us discuss that place that our culture chooses not to think about. The "deep space" of our body. The rectum.
It's a pretty useful spot. Located in between the bowel and the anus, it is of course wonderfully useful for expelling feces. And because it is a highly vascularized area of tissue, it is also very useful for absorbing things into the bloodstream. Rectal suppositories of medicine have been used for centuries, and more recently it's come to my attention that essential oils can be administered systemically via this technique.
For an introduction to inhaling essential oils in general, click here.
In mid-May I began inhaling Benchmark Thyme essential oil in my nebulizer. For two and a half weeks I inhaled 3 drops of the oil mixed with 3mL of normal saline and nebulized it twice a day. By the end of this 2.5 week trial period I noticed a significant improvement in my lung and overall health. Of the oils I have used so far, Benchmark Thyme (BT) is probably my single favorite. In the two weeks before starting BT I was inhaling a combo of eucalyptus and tea tree oils. Although these oils kept me from declining back to pre-essential oil levels, when I began using thyme I could notice a difference. My main lung bug is MRSA, and since BT is specifically formulated to target MRSA infections, I believe this is why it has been so effective for me.
Coughing up blood ain't fun, and sometimes it can be kinda scary. I began to see blood in my sputum once in a while beginning in high school. Now it's a bit more frequent and in larger quantities, but I don't let it get me too worried anymore because I know how it works and what to do in an emergency. I thought I would talk about hemoptysis a little bit here, as it is something you might run into, and it can be scary for someone who is new to it. Some of these things can be worrying to think about, but ultimately the point of this post is to inform you of the possibilities so that you are prepared to do what needs to be done in these situations. By asking questions and learning as much as I could about this topic, I've faced my fears and eliminated the anxiety I used to have over coughing up blood. Now I know what to do and am unafraid. I hope this info can help you, too.
Mica McDonald (they/he) is a clinical herbalist, nutritionist, ecologist, and writer living in Abenaki territory (Vermont).