The Good, The Bad, and The Bugly

So I am a 45 year old woman born with Cystic Fibrosis. I am currently fighting for my life everyday with a lung function of only 28%. To put this into laymen terms, think about a 1 gallon jug of milk and a small 1 cup carton of milk. Most people can fill their lungs with the amount of milk in the gallon jug aka as 4 litres. I am not one of them. I can only inhale the small carton of milk or .80 litres of air. My lungs are permanently damaged from chronic infection(meaning it never goes away) due to an abnormal amount of mucous in my lungs trapping bad bacteria and starving said part of lung of oxygen. CF is caused by a gene that does not regulate a very important chloride channel which is responsible for carrying sodium chloride to the surface of the airways. This prevents the lungs from clearing the mucous as a normal lung would. The mucous just stays stuck inside the airway trapping bacteria and making the lungs chronically infected.  This results in the need for daily antibiotics, inhaled medication that tries to break up the mucous and often hospital stays for a more intense round of intravenous antibiotics. 17197A72-D43B-42DC-AB44-2F8BF753BF8E I hope this makes sense. CF is a very complicated disease and I find trying to explain it properly is like unraveling the Da Vinci Code. On top of the lung issues, 80% of patients are pancreatic insufficient. This means that enzymes needed to digest food are blocked by mucous in the pancreas. In order to digest food and get the nutrients I need I have to take enzyme capsules every time I eat or drink. It is very difficult to get the calories I need to fight the disease attacking my body let alone needing to remember to take enzymes every time I eat or drink. At end stage CF, which is where I am, I need 4000 calories a day! So pretend you are sick with the flu and a plate of 20 steaks, 40 baked potatoes, 2 lbs of buttered carrots and a gallon of chocolate milkshake are put on your lap and to survive the day you need to eat and drink all of it. Remember, you are very sick and nauseous with the flu. Could you do it? Of course not!! Its impossible. For that very reason I needed to get a feeding tube surgically placed into my abdomen so that I could get 60% of those calories while I sleep and manage to eat the other 40% during the day. This tube saves me everyday.BC4E23A1-A3ED-4C7F-878A-57F871A5E164 Add to this diabetes, osteoporosis, loss of sense of smell and broken lungs and you get a pretty vivid picture of how truly broken my body is.  So that is my first official blog for Lungs of Anarchy. Check back often as I plan to share this incredible journey for all to come along.


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