Saturday, May 11, 2013

CF Awareness Month Blog #11 - P Words

Thankfully, I don't know what half of those "p-words" are, so I'll just inform you on the ones that I do. :)

Pseudomonas: "Moderate mucoid Pseudomonas aeruginosa" (to be exact) is what I culture in my lungs. I've had it for as long as I can remember, and it seems to be pretty common in Cystic Fibrosis patients. If you click on the link, there's a great explanation for how it's treated in CF.

Ports: Fortunately for me, I only know about ports from my exposure to the CF community and other CFers' stories. The best way for me to explain it is a permanent way to access your veins for IV medication. It's something that's placed under the skin that's connected to a large vein. Instead of having to get a new IV every time a patient needs antibiotics, this is placed to make access easier.

Physio: This is my chest physico-therapy, aka: the Vest or chest percussions. If I had the option, I'd choose manual chest percussions any day over my Vest. But I can't make Tim do that for me! Every once in a while, he'll give me a good beating, and its like an instant mucus mover. And it feels like a wonderful massage -- even though he frequently asks if it hurts, it never does - best feeling ever! He cups his hands and claps on my back/sides (where my lungs are) and I can usually instantly cough up something. I love manual chest PT because I can feel it working without nebulizers.
But like I said, I wouldn't ever make Tim do that for me for an hour a day....although, his arm muscles might get huge! ;) That's why I have the Vest. I set it to different frequencies/pressure to help shake and loosen the mucus from my lungs....with the help of Albuterol (to open my airways), Hypertonic Saline (to add salt & water to my airways to loosen things up) and Pulmozyme (to loosen my mucus) and antibiotic TOBI (to help to try kill the pseudomonas). This combination has been working for me, but every CF patient is different. Some have to do their treatments (Vest & nebs) 3-4 times a day, others are on IVs more frequently...everyone's different. And what works for one person, doesn't always work for another.

Pancreatic Enzymes: I went into depth about my enzymes in my Diet post the other day. Basically, my pancreas cannot produce natural enzymes to break down and absorb the food I eat. So every time before I eat, I have to take synthetic enzymes to help me with that process. If I don't, I get very bloated, have lots of stomach pains, and everything goes right through me. I've been on a few different types of enzymes throughout my life, trying to find the right one that works for me.

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