It's pretty much guaranteed that we CFers have to go into the hospital once in a while to get a "tune up": a few weeks of IV antibiotics, extra chest physical therapy and inhaled meds, and rest. I've had my fair share of tune ups since I was a kid, and I currently feel best when I get one every 3 to 4 months. I wanted to share a few pieces of advice to other adults with CF out there who want to maximize the effectiveness of their stays, and also reduce the risk of developing possible side effects. Being a kid in the hospital is a little bit different, but some of the same tips may be helpful for the smaller humans, too.
Hey there friends! I have been meaning to do some more in-depth monographs on some of my favorite herbs, particularly ones that are beneficial for most people with CF. I mention a few helpful herbs in the section called Herbs for CF, but there are several herbs that are so helpful that they deserve a more lengthy discussion.
Let me explain: a "monograph" is a lengthy description of a particular herb (there are also drug monographs, but I will not concern myself with those) that usually includes Latin name and botanical family, common name(s), parts used, how to identify them and grow them, where/how to source or buy them, their energetic profile (according to organoleptic analysis and traditional healing practices), physiological actions, clinical uses, key constituents, relevant scientific literature, safety concerns, preparation methods, and dose. A "Materia Medica" is a compendium of medicinal herbal monographs. There are many materia medicas from different herbal and traditional medical modalities, such as Ayurveda, Traditional Chinese Medicine, Eclectic Medicine, Tibetan Medicine, Modern Western Herbalism, and so on. I will not post my entire collected materia medica (mine is over 300 pages long so far and growing), but I will post a few herbs that I think everyone with CF (and many other people, too) will benefit from knowing.
For many people with significant gut issues, or for those who need to help their microbiomes recover from a period of antibiotic use, taking probiotic supplements is often a good idea. But not all probiotics are created equal. In fact, many probiotics sold on the market are totally worthless. Probiotics are now such a household term that many low-quality supplement manufacturers are jumping on the bandwagon and producing products labeled "probiotic" that may not be probiotic at all. There is essentially no regulation in the US for the probiotic industry, so it is the responsibility of the consumer (that's us) to determine what's a high-quality versus low-quality probiotic. Throughout my research I've come across some great tips from clinicians and microbiologists on how to choose the right probiotic. I've come up with a list of requirements for choosing a good probiotic, and I've also provided examples of a good brand versus a bad brand:
A friend of mine with CF who lives in South Africa has a history of severe gastroparesis (delayed gastric emptying) and low stomach acid, which (alongside her Crohn's, CFRD, and removal of her terminal ileum, ascending colon, and gallbladder years ago) has caused her significant digestive distress and inability to digest anything other than her extremely regimented liquid diet. For years Paula's gastroparesis has been so bad that if she doesn't eat precisely the right thing in precise quantities at precisely the right time of day, her stomach will not empty, which puts pressure on her diaphragm and lungs and can cause significant respiratory distress and vomiting. She is a great researcher and has tried many, many things to help this situation, but nothing had yet made a significant dent on these distressing symptoms (including multiple motility drugs). I've tried to strategize with Paula to figure out what was causing or had caused the issue, and secondly what do we do about it now. After a lot of trial and error, it seems we've found two things that have made a big difference in her life: lecithin and artichoke leaf (Cynara scolymus).
This recipe may be my biggest hit yet. Somehow this recipe creates brownies that are cakey and moist and outrageously chocolatey. Anyone who tastes these are blown away. When I tell them they're paleo, they're like "what's paleo"? They truly can't tell. They're just damn good. End of story. The batter can also be poured into a cupcake tin and spread with chocolate frosting on top (recipe below). Enjoy!
1 ripe banana
1/2 large sweet potato (boiled or baked)
3 duck eggs or 4 chicken eggs
5 dates (roughly chopped)
2 heaping table spoons of honey
1/2 tsp salt
1 tsp baking soda
1 cup nut butter
2 tsp vanilla extract
1/2 cup dark chocolate chips
1/2 cup cocoa powder
1) Blend the banana, eggs, boiled sweet potato (peel on), and dates in a vitamix or good blender until completely smooth.
2) In a mixing bowl the above to nut butter and mix well.
3) Add vanilla extract, salt, and baking powder. Stir in then add honey and stir more.
4) Add coca powder slowly (so as not to make a mess) and mix in. Mix in the chocolate chips last.
5) Heat oven 325 degrees F. Grease a 9x9” pan with coconut oil. Pour the batter in.
6) Bake for 45 min or until it passes the toothpick/chopstick test.
Paleo Chocolate Frosting
1 cup unmelted coconut oil
1 cup honey
1 cup cocoa powder
2 tbsp coconut milk
Makes enough for at least 10 cupcakes
1) Blend all in the vitamix, add the additional coconut milk if needed to improve texture.
2) Chill/cool cupcakes or brownies before adding frosting
3) Keep frosting refrigerated until use.
Sinus disease is a common part of cystic fibrosis. Many of us need to have the chronic infection in our sinuses cleaned out and the polyps removed at some point in our lives. I personally have had 4 or 5 sinus surgeries in my life (I've lost count honestly). This type of sinus infection clean-out and polypectomy is called a FESS (functional endoscopic sinus surgery). I recently had a FESS done in December, plus a septoplasty. I needed a septoplasty because my septum had deviated to the point where it was occluding parts of my right sinus. Interestingly, the bone of the upper septum had ballooned out so that it looked quite deformed on CT-scan (but didn't aesthetically look unusual from the outside). When the surgeon went in to scrape it down, he remarked to me that the bone in there was like spongy mush; very unusual. I wonder if it is a sign of osteopenia. I don't know why else this would have happened. Maybe the infection/inflammation had effected the bone? I don't know.
I mentioned in my previous post on my experiments with cystagon that I was going to try Orkambi, the drug designed to correct the CFTR channels in the cells of CF people with two deltaF508 mutations. Well, I did try it. And I'm not on it now. That should give you a hint of my general take on the whole experience. I'm back on cystagon and plan to stay on it indefinitely, or until Vertex comes up with a better drug for me to try. First, I'll give you a little summary of what it is and what it did for (or to) me, and then I will discuss the significance of its pharmacology.
I have been experimenting with Cystagon for about 5 months, and since I'll be going off of it to start Orkambi soon, I figured I should write a post on my experiences. Overall, Cystagon was incredibly helpful to me! In the early stages, it allowed me to feel well enough to travel (which has become very difficult for me these last few years) to see family in nearby states. It also has cut down my total mucus load so much that my recent hospitalization was much more successful because the antibiotics could work better and more quickly. I did experience side effects, but they were mild enough to tolerate, especially given the benefits. I want to write this post to encourage other CFers to try it (with caution and a physician's consent), especially those who have a deltaF508 mutation or those who cannot get access to Orkambi. It is a promising drug that I believe will be used more often in the future with CF (formulated for our specific needs) and for those of you who, like me, need something right now to keep your lung functions stable or high enough until a more effective drug comes around.
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.
Hello there! My name is Mica, and I am an empowered advocate for holistic health and environmental sustainability. I am a 28-year-old activist, herbalist, world traveler, drummer, martial artist, climber, intellectual, dirt worshipper, and also happen to have cystic fibrosis. I love researching health information for the benefit of myself and others, and experimenting to find out what works. Please ask questions or share what's worked for you! That's how we'll find out the truth, together!
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