Things I Wish I’d Done to Improve My CF Treatment

Twenty-four years of living with cystic fibrosis allows for a plethora of learning lessons — mostly through mistakes I’ve made. There are many things I wish I had done differently regarding my health to improve the effectiveness of my treatment.

If I knew then what I know today

Here are some of the biggest changes I would have made if I knew years ago what I know now:

1. I wish I was more serious about anti-inflammation diets.

Inflammation was more difficult to notice when I was healthier and not feeling its symptoms. But when my disease became more advanced, the body aches, inability to move mucus, and breathing irritations were some of the worst symptoms. CF naturally produces inflammation, but I wasn’t helping matters by drinking gallons of Mountain Dew and consuming copious amounts of sugary desserts to “cheat” with my weight gain.

There are many healthier options for weight gain, like nuts and oils, that I could have used. A perk of using those things for snacks is they can actually have an anti-inflammatory effect. It was difficult to drag myself away from sugar cravings, but once I did, treatments and daily life got a lot more productive.

2. I wish I made treating my aspiration a priority.

Aspiration is when stomach contents or foreign substances enter your airways, often through steam, reflux, and vomiting. And your lungs hate it. Corrosive substances obviously don’t belong in your lungs, nor do the bacteria and viruses from the environment and your stomach.

Treating my nausea and reflux should have been imperative, but for a while, I just accepted them as part of the CF life. Doctors theorize aspiration caused mycobacterium abscessus to enter my lungs, plus a lot of general lung damage.

Aspiration is best prevented by lifestyle changes like sleeping on an incline, not breathing in shower steam, not drinking liquids before sleep, taking reflux medication, and other methods. I also got a J-tube, which sticks into the intestine rather than the stomach, so it reduces the risk of nausea and aspiration from tube feeds.

3. I wish I did strength training in addition to cardio.

I only had cardio pushed on me because lung workouts seem like an easy answer to treating CF. I also believed in the stereotype that CFers couldn’t be muscular (myth!). When you have weak lungs, strength training is cardio – and more.

Weight gain is a goal for many CF patients and muscle is denser in weight than fat, so stack it on! The high-calorie and high-protein diet required for strength-building goes hand-in-hand with the CF diet. Muscles also positively assist in the body’s response to illness stress. Get the muscles needed to knock out that bacteria.

4. I wish I was more cautious with my sanitation habits.

Ever since I got my lung transplant, I’ve had to follow new protocols for keeping myself safe from germs, as my immune system is intentionally kept low-functioning. I carry hand sanitizer with me everywhere I go, avoid touching door handles when possible, avoid food virus risks (sushi, rare steak, unpasteurized substances), don’t touch my face, and wear a mask in crowded areas.

I’m not saying I wish I lived in a bubble, but dabbing on some hand sanitizer here and there isn’t much of a sacrifice to avoid germs. Despite my low-functioning immune system, I haven’t caught a sickness in the nine months since I’ve had my transplant.

5. I wish I researched the best ways to absorb my medications and vitamins.

Honestly, I usually ignored the “Take with fat” and “Don’t take with dairy” labels on my medicine bottles. But then my transplant came, and I had a very long talk with my pharmacist about how ineffective medications and vitamins can be when you don’t take them as ordered, especially when I already have CF malabsorption issues. Do your research and outline with a pharmacist a concrete schedule of when you should take your medications, and with which medications (to avoid interactions).

6. I wish I took any and all precaution testing.

If I went to regular audiology appointments while on Amikacin, I might not have lost as much of my hearing as I did in both my ears. If I got regular blood draws, I might not have damaged my kidneys as much as I have. I skipped many tests because they were inconvenient and I paid the price. If your medications or treatments come with particular risks, do all you can to keep an eye on side effects and symptoms.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.