The reality of CF....

The truth? Its a mean, deadly monster! Just think for a minute...your lungs produce thick sticky mucus that you can't clear and bacteria thrives in that mucus. Your pancreas has mucus plugs that blog the secretion of enzymes essential for digestion. Your heart works overtime compensating for your lungs. Thick mucus can cause problems and blockages in the intestines. Your stomach PH is messed up. Liver disease can be present as can a form of arthritis called CF related arthritis. Sinuses are underdeveloped and clogged with sticky mucus

You watch your friends die of the same disease and wonder if you are next. You endure long bouts of illness either with intensive homecare or in the hospital. You can't be any closer than 3 feet to your friends with the same disease and thats with wearing a mask.

To give you an idea of my life. I take anywhere from 2-6 pills everytime I eat depending on what/how much I eat. On a good lung day I spend about 45 minutes hooked to a nebulizer doing 3 different meds. Following that I am hooked to a vest machine (think a life jacket hooked to an air compressor by vacuum hoses) for 30 minutes. This happens 4 times everyday.

I frequently struggle for air and cough until I choke and throw up. Despite using my vest sometimes my mom has to pound on my back to help break up stubborn mucus plugs

I take antibiotics and steroids on a regular basis..sometimes for months at a time. If oral fail then I have to have them given IV.

I frequently need an inhaler inbetween nebulizer/vest treatments.

One bad strain of bacteria, one stubborn pneumonia and I'm dead. There is no guarantee that the next time I get sick that I will recover. Infact My recovery time is longer and I bounce back harder each time. My left lung is damaged from repeated infection

Because of the steroids and how fragile my lungs are I have to wear a mask everywhere I go.

This is my reality. As are stomachaches. vomiting and upset stomach in a regular basis. Aching joints from CF related arthritis. I deal with lots of pain some of which requires narcotics. I sleep propped up on 4 pillows or I choke on my own mucus. It has been years since I was able to run and somedays walking..even just to another room leaves me gasping for air

There is no cure....this is my life and the life of thousands of other americans...mostly children and young adults. Less than half of people with CF will see age 37....I'm 26