Secrets of Living with Cystic Fibrosis

Persons with CF Utilize Positive Outlooks on Life While Waiting for a Cure

Our family is generally very healthy. We have many who make it to over 100 years and only a few have had any type of problems at all until they pass on in their sleep after a long happy healthy life.

My sister and one cousin are the exceptions. My sister has had diabetes since she was 7 years old. Watching her balance her diet and take three shots a day for 32 years was really sad. She was very lucky because after 32 years she was able to have a pancreas transplant done at the University of Washington. It changed her life.

My cousin also has a terrible medical condition that requires constant diligence as far as his diet and his over all health. He has cystic fibrosis. He is now 23 years old. At times when every thing is in balance you might not know he is very sick.

He calls himself ET and if you know about CF you understand why. It's called clubbing. He does not have it very bad but it's true the end of his index and middle fingers, on each hand, look like those of ET. They start swelling in the middle and by the time you look at the end of the fingers they are like small bulbs. His clubbing is said not to be as sever as many other with CF get.

I imagine his clubbing is less than it could be because of all the money my aunt and uncle have spent making sure his diet has been balanced. Salt is very important in the diet of a person with CF because they loose an unusual amount of salt when they perspire. He also has to be very careful about getting colds and any disease that involves the lungs; such as colds and flu.

In general he has very few friends because he was home schooled and had such a protected lifestyle. He did marry a nurses assistant who had been with a nurse to help take care of him a few times a week. Mostly they ran tests and made sure his diet was on track. Any way they fell in love and over my aunt's objections they got married.

The doctors say he may live longer than the average CF patient because he is doing so well. Normally people with CF die in their mid thirties.