It's a CF Thing...

Over this past year and a half I have "come out" of the CF closet. My family and closest friends knew about my illness, but many of my acquaintances or co-workers had no clue. It was quite easy to hide. Or, if they knew, they assumed that it must have not been so bad since I "looked" fine from the outside. This past 6 months of hospitalizations and almost constant IV treatments probably took some by surprise.

I have found that some people are still confused about my illness, since I still look the same on the outside. I think it's so easy for people to understand that someone is sick when they see outward proof of an illness or aggressive treatment. Much of the impact of CF is internal. So, I wanted to share some of the outward physical manifestations of Cystic Fibrosis, just to raise awareness.

Cough: A CF cough for most is very congested sounding. A coughing fit can last several minutes. Most people with CF cough every single day...I do. Some people with CF cough so hard that they open up a wound or blood vessel in their lungs and can cough up large amounts of blood. This is called Hemoptysis.

Salty Skin: In the middle ages in Europe they were informally diagnosing children with an unknown disease, simply based on salty skin. They used to say, "a child who tastes salty from a kiss on the brow...is hexed and soon must die". The disease that they were talking about was CF. My sweat is salty. I look like I have frosted skin when sweat dries on my face. Ick...sometimes it even burns my skin and eyes. On a positive note, I'm sure it exfoliates my skin at the same time!

Clubbed Fingernails: Due to a lack of Oxygen, most people with CF experience clubbed fingers. The nail beds and tips of the fingers are larger than what's considered normal. My pinkies and thumbs are OK so far, but my index, middle and ring fingers are clubbed...though not severely.

Barrel Chest: When people have illnesses that cause a chronic cough, they can actually change the shape of their rib cage. The rib cage takes on a more circular shape, then it's normal oval shape. This sometimes occurs in people with CF. I am pretty certain that this symptom doesn't impact me yet.

"CF Belly": I kinda made this one up... I haven't seen anything written on this topic, but I have spoken about it with several of my girlfriends with CF. That means it's definitely true! People with CF typically have difficulty keeping weight on. The CF pancreas does not digest fats. When the pancreas is deficient, it's called pancreatic insufficiency. CFer's who are PI take enzymes so that they can digest more of the foods and nutrients that they ingest. I am pancreatic sufficient. My pancreas still digests some of the fat and nutrients I take in, however not all of them. I am just not at the point yet where I need to take enzymes.

(Nope, this is not MY belly)

CF patients are encouraged to eat a lot of very high fat food. I have no problem with this part of the disease! My CF doctors have also encouraged me to keep a little layer of extra fat stored on me, since when I get sick it will melt away. Mission accomplished on that one! However, when us CF ladies get together we often feel the need to compare our CF belly's. Many of us have a similar body type, including skinnier arms and legs, along with the 4 month pregnant belly look. I'm sure the belly has to do with digestion...I don't know. I just know that no amount of crunches are going to flatten this girls CF belly :-/ I want to hear from my Cysters out there... Any of you have the "CF belly"?

A little health update. Not too much has changed in the last few weeks. I am still on the IV and nebulized Amikacin, along with the oral Zyvox and Azithromycin. My white blood cells and platelets have been behaving. I have a clinic visit next Wednesday, at which I will have my PICC pulled. No more IV's after Wednesday! Whew!