Treatments

I touched on treatments and their development in my timeline post, but I do want to show you the current treatments used for Cystic Fibrosis, specifically in my case.

Now, I do have a very mild case, so I don’t have to take enzymes or alter my diet too badly, but I do want to walk you through each of the ways I take care of myself.

My favorite is summertime. Now, for people with Cystic Fibrosis, the heat can mean extra sweating, extra dehydration, and fatigue. I’ll admit, as it gets hotter outside I tend to struggle more, especially since my apartment here at college doesn’t have air conditioning. So I treat it by consuming more salt in my diet to compensate from the salt I’m losing. My doctors (both my Cystic Fibrosis clinic doctor and my family doctor) and my dietician suggest finding ways to get calories and salt at the same time, so that I can maintain my weight now that I’ll be more active outside. My favorite way to do that is by eating potato chips. It’s not the “healthiest” way to do it, I know, but I frequently consume potato chips in large quantities during the summer to keep my calorie and sodium intake high. I also like to eat salt. It’s a natural craving for those with Cystic Fibrosis, really…and not at all weird…but I really do. My aunt bought me Himalayan salt crystals and I suck on them and chew them when I’m craving something salty and don’t feel like totally clogging my arteries.

I also keep on hand water. Well, I prefer juice because water is boring and from the tap isn’t as good, but the concept is the same. I have to stay as hydrated as I can in both the summer and winter (the summer is much more significant, but I do need it in the winter as well). At any given time, there is at least one and sometimes up for three water bottles beside my bed for easy access and a constant reminder to consume water and keep my body running as smoothly as I can.

My diet only really consists of those changes, but I do have treatments I get to use. Along with occasional antibiotics for sickness, I also use a nebulizer for breathing treatments. I use Xopenex for more maintenance and Albuterol for treatment when I’m feeling under the weather. If I happen to let myself get too far, I do have Pulmozyne to use on rare occasions. These medications are pretty typical for asthmatics to use—like I said, my case is rather mild—but do the job they need to.

I also have the ABI Vest Treatment. This is literally a vest (not a very fashionable one, unfortunately…I mean, buckles are so last century) that hooks up to tubes. These tubes are attached to a ridiculously large and heavy machine which inflates the vest, squeezing it tight around m, and vibrates. This is to loosen up the mucus in my lungs so it doesn’t attach to my airways. The ultimate goal is that I will begin to cough and force the mucus in my lungs up and out to alleviate some of the effects of blockages, etc.

Like I said, my case is very mild. My routine is small and I am so grateful that I am able to get by without some of the stronger treatments needed by other patients. Most patients deal with any or all of the following:

• Antibiotics for lung and sinus infections, taken by mouth, IV, or nebulizer treatments
• Inhaled medications in breathing treatments
• DNAse enzyme therapy
• High concentrated salt solutions
• Diet high in protein and calories
• Vitamin supplements
• Pancreatic enzymes taken by mouth to aid in digestion
• Breathing treatments for maintenance
• Percussion vests
• Manual chest percussion
• The A-capella
• Eventual lung transplants

Treatments are constantly becoming more effective and more accessible as time progresses. Eventual treatment through gene therapy or other “cures” are being developed. Many people are hoping to change the entire meaning of CF—from Cystic Fibrosis to Cure Found. With the treatments that we have and developing therapies to come, lives are made a little easier and more tolerable.

Keep Hope,

Cystic Sister @----