Apr 30 2009
Understanding Cystic Fibrosis.
When you hear Cystic Fibrosis what do you think?
If like most you possibly think nothing past “oh their sick” until now. Allow me to explain exactly what Cystic Fibrosis is. Cystic Fibrosis also known as CF is an inherited chronic disease that attacks the lungs and digestive system mainly. About 30,000 adults and children in the US are affected by CF and struggle everyday to breath, eat enough food and maintain general health. Symptoms range from salty skin to intense lung infections to difficulty in bowel movements and are far from the same in each patient.
Clear understanding right? WRONG. What you just read is no diffrent from any other article you can pull up in your search engine of choice so now let me ask again.. What do you think when you hear Cystic Fibrosis? Up to speed a bit now and you may think something along the lines of “A lung disease” or “A disease that affects the digestive system” or possibly both and you are very right but still so very much in the dark.
The following paragraph is from a 1st person point of view, it is in no shape form or fashion from a Doctor a nurse or even a CF patient. It is however from a person that for the past 6 years has seen many many up’s, down’s, near death experiences, un answered questions and a massive amout of questions, studing, reading and personal times. I now will explain to you what CF is in real life, no text book stuff here only me, my terms and the ocassional input from the patient himself.
Cystic Fibrosis is a selfish, careless, nasty and ugly disease. It creates unbelievably sticky mucus all over the body mainly in the lungs.. Its so sticky patients have to do medicine in aerosol form numerous times a day to loosen the mucus, after completing the aerosols they need some sort of CPT ( chest physiotherapy or chest percussion ) which, can be done in several different forms but bottom line is something or someone has to beat on their back and sides to knock mucus from the lungs making it possible to cough up. Aside from the aerosols and CPT they generally have more than a handful of pills to stat the day and another hanful for the night. Alot of pills right? Well that was before I got to tell you about enzymes.. CF causes some major problems for the digestive system including but not limited to: Loose greasy bowel movents, frequent bowel movements ( like 12 a day ), pain, and the inability to retain calories.. To help with the said digestive problems they have enzymes.. Some patients take 1 per meal some take 12 per meal..Are you following?? Everytime a CF patient sits down for breakfast, lunch or dinner they take another handful of pills. Now were looking at alot of pills but we must keep going because oral meds only get a CF patient so far. Due to the severity of the infection in the body IV antibiotics are often needed..Simple right? WRONG again. More than half of the bacteria and germs that grow in a CF patient are resistant to most antibiotics making it quite difficut to treat and get rid of.
Moving right along..CF also affects the sinuses causing Chronic Sinusitis. We all know how a sinus infection feels right? Now triple that pain and stuffy nose add in a severe headache and make sure you realize nothing OTC is going to help you, chances are perscription meds are not going to help you out much either. Surgery however will make you feel some better for a little bit. But of course after your 5th or 6th or 11th surgery it should all be a piece of cake right? How about we throw in some Diabetes and some Arthritis or maby I should mention the countless other surgeries like getting a port ( is a small medical appliance that is installed beneath the skin ) in attempt to make treatment easier or a bronchoscopy to help clean out the lungs or a nice pulmonary embolism done through the groin.. Let me not fail to mention the insane amount of time blood work that must be done or the feeding tube that is often needed.
Now what do you think when you hear Cystic Fibrosis?
Stay tuned for part 2 of “Understanding Cystic Fibrosis”
XoX
