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CF is progressive disease affecting the lungs and digestive system of about 30,000 people in the United States. A defective gene causes the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas, interfering with the body’s ability to break down and absorb food. Many people with the disease can now expect to live into adulthood. However, there is NO CURE for CF.
2 comments:
Excellent article with great information. I think that home IV's are something that is often overlooked. In the CF community there is a lot of talk about hospitalizations, but not much discussion about what happens after discharge.
When i first started doing home IV's my hospital provided me with a teaching class on how to do them prior to my discharge. That helped to reduce my worry about home IV's. Not sure if all hospitals do this, but if its available, it is certainly something worth doing. I found that after doing them for about a week at home I was pretty comfortable with IV's. Now I am able to literally do them in my sleep, I draw my own labs and my wife does my dressing changes. So outside of the home infusion company delivering drug and supplies I am pretty self sufficient.
You bring up an interesting point about teamwork when you describe how you and your wife work together to do the infusions. I've found that like with so many other aspects of CF, having a supportive team (spouse, parents or whomever) can really take a lot of the anxiety out of things like infusions.
I'm quite self-sufficient as well. Have been for years. :)
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