You may have heard a CF patient or two talk about pills. Pills, Pills, Pills am I right?? So what kind of pills might a typical CF patient take? Before I get into my typical pill routine, I want to point out that everyone with cystic fibrosis is different and so are their pills and circumstances. Some people have lung and pancreas issues, while some have just one or the other. Lots of us have sinus issues and some have CF-related diabetes.
I can only write and share from my experience and perspective of course and I think it goes without saying, I am not a medical doctor.
Every single day I personally take 40 to 50 enzymes called Zenpep. I take 3 to 4 per meal depending on fat content. I need these pills/enzymes to digest fats. I also take 2 vitamins called DEKA which helps me absorb vitamins that need fats to be absorbed – D, E, K and A (hence the name DEKA). These fat-soluble vitamins are critical to normal growth and good nutrition.
I inhale Pulmozyme once a day and hypertonic saline three times a day along with my vest therapy for my lungs. Hypertonic saline was discovered when surfers with cystic fibrosis in Australia were doing pretty well and researchers tied it to the saltwater. I also take Xopenex to clear my lungs before my hypertonic saline.
When the unfortunate and inevitable happens and I get sick, I take IV antibiotics to help me recover. I will also add a nasal therapy in the morning and night with Fluctisone and Saline spray. Then to clear out my sinuses I will use a netty pot up to 4 times a week.
I take several other supplements like Juice Plus because they have helped me feel well over the years. I drink a smoothie which includes UMP chocolate (found on Amazon), bananas, ice and Wowbutter (my daughter is allergic to tree nuts and peanuts). I take a laxative powder called Miralax twice a week to make sure that I don’t get constipated. I also take fish oils and other small vitamins to improve my health. Read more about my diet here: diet-and-cystic-fibrosis and here: shedding-light-on-the-cf-diet
So there you have it! This is my daily, weekly and monthly medication and treatment routine. It takes up a large chunk of my time to maintain this regimen but it is vital to me staying healthy and being the best father, husband, son and brother I can be.
Note: Please don’t change your current routine until you have spoken to your physician.
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