Treatment Regimen

Immediately upon my diagnosis of CF, I was given a strict regimen of treatments, a prescription pad full of medications, and a new diet. I was told I would need to be seen by my CF doctor every three months, for the rest of my life. My mom was informed that I wouldn't live very long...the average life expectancy was around 15, if I was lucky.

Let's talk more about my treatment regimen:

First stop:
Nebulizer's and inhaled medications. I was prescribed the following:

• Albuterol 3 times a day, up to 5 times per day, if needed. Albuterol is a bronchodialtor that relaxes the muscles in the airway. Once these muscles are relaxed air flow to the lungs increases. A well known side effect of Albuterol is that it makes me hyper. It increases my heart rate, I get nervous, and then comes a nice little headache.

Over the years I was prescribed additional aerosol treatments:

• Pulmozyme-initially prescribed at 2 times per day, but this was soon changed to 1 time per day. Pulmozyme kind of acts like scissors that cut up the mucus. It thins the mucus and keeps it loose, which means you'll be able to pass it quicker, leaving less build up in your lungs. As a result, it reduces the risk of respiratory track infections
• Tobi- 2 times per day, 28 days on, 28 days off. Tobi was made to target a specific bacteria, psedudomonas aeruginosa. (more about common CF bacteria next post!) The first time I took Tobi, I felt like I could finally breathe! It was a great feeling, obviously!
• Hypertonic Saline- a sterile solution of sodium chloride (NaCl) this is a 7% solution that hydrates the thick mucus and makes it easier to expectorate! It basically does what the mutated CFTR gene doesn't do! 

Oral medication:

• Pancreas enzymes, later changed to Creon supplements with meals, later changed to Creon. 6 with meals 4 with snacks
• Urisodol, also referred to as "liver pills."  It reduces the cholesterol absorption and aids in dissolving gallstones
• ADEK- a multivitamin that includes vita A, D, E, and K. 2 times per day, later changed to SourceCF gel vitamins
• FloNase, later changed to: Nasonex- sinus spray 2x per day
• Beta Carotene 2x per day
• Vitamin D 50,000 units
• Vitamin E 400 IU 
• Advair
• Zantac, later changed to Prevacid
• Albuterol inhaler

New Diet:

• High calorie (anywhere from double to triple the normal calorie intake)- People with CF burn more calories trying to breathe than a normal person, so increasing our calorie intake makes up for the difference
• High protein
• High Iron- eat with caution, you don't want to consume too much iron. Iron helps fight infections, and it helps carry oxygen in your blood from your lungs to every cell in the body
• Salt- because we lose salt in our sweat we should consume more especially when exercising or in hot weather
• Zinc- helps fight infection and is important for growth
• Calcium- people with CF are at risk for osteoporosis, a condition in which the bones are weakened. 

It is extremely important to meet with a dietician and create a diet that caters to your specific needs! Also, remember to take your enzymes before meals as to digest and absorb the nutrients better!

Next post: common bacterias in the lungs of a CF patient

see ya later,

B.