Maintaining Life with Cystic Fibrosis

Continuing on from my Introduction post, I thought that I would share a little about my life living with a chronic illness. Although I don't let Cystic Fibrosis define me, it is still a big part of my everyday life. I can sometimes spend 2 hours a day just on maintenance; as in breathing treatments and airway clearance.

A standard treatment session for me includes:
30 minutes of The Vest(airway clearance method) inhaling Albuterol, which is a brochodilator(opens up the airways)
inhaling Pulmozyme, a mucolyte(mucus thinner)
and if I am on my 'ON' month of Cayston(antibiotic) I inhale this medication once my Vest session has finished

On top of the maintenance that I do for my lungs, I also take up to three Pancreatic Enzymes with every meal. For those with CF, mucus clogs the pancreas, making it hard to digest and absorb the nutrients from the food that we eat. Enzymes help the body absorb carbohydrates, proteins and fats. If I don't take my enzymes like I am supposed to, you can see me running to the restroom within 30 minutes of eating a meal. It's also very important that I take vitamins as well. People with CF have a hard time absorbing fat soluble vitamins(A,D,E and K). I currently take a multivitamin that has high doses of ADEK and I take an additional 500 units of vitamin D, since my vitamin D tends to run low. When I am sick with an infection I'm prescribed antibiotics. I am not going to get into those right now though, since they tend to change each time.

At the beginning of the year I was prescribed supplemental oxygen. I am currently on 2 liters with activity and while sleeping. The o2 was prescribed to me due to my low oxygen saturation levels during my 6 minute walk test(6MWT). During this test oxygen saturation levels are monitored while walking at a leisurely pace for a total of 6 minutes. If at any time, sats drop below 88% supplemental oxygen may be considered. Normal levels are anywhere between 95-100. If I'm sitting in place, my sats tend to run around 91-94 depending on the day and how 'junky' I'm feeling. However; walking, even if on my treadmill, my sats can go down into the low 80's. If I go out I always make sure to bring small oxygen tank and my pulse ox meter with me. It is very important to keep oxygen saturation at safe levels (over 88%) because low levels can have negative effects on the lungs, heart and even the brain.

Well, these are all of the CF medications and therapies that I do in an average day to keep me going. If you have Cf and take any medications or any therapies that I don't have listed, I would love to hear about it. I love learning about new things to keep me healthy.