The Totality of Cystic Fibrosis

**Originally posted March of 2009

I've already talked about how CF affects my lungs...now on to the rest of the body.

Most CFers have a very hard time putting on and keeping on weight. I have been very blessed in the fact that I, for the most part, have not had that problem. In the CF community, I’m fat. My weight does fluctuate however. In the last year, I was 165 lbs at my lowest and 205 lbs at my highest. Gaining and losing this weight has its side affects and I have the stretch marks to prove it.

It is, however, a constant struggle between CF and food. I know I have to maintain a healthy weight, but there are times, many in fact, that food just doesn’t look very good. I eat. I get nauseated. I don’t eat. I’m hungry. I force myself to eat. I throw up. I manage to eat a good meal. I feel (and look) extremely bloated for the next 4 hours because of the malfunctioning digestion problem. So you see, when it comes to CF and my “diet”, they are in constant battle. Who knew eating could be so tough?

There are also other internal organs that are affected by this disease. Again, you can look up the specifics online, but just as a side note in which I know many can relate to: CFers have a high rate and are major “candidates” for diabetes. I have been very fortunate thus far, but have been told that it is not a matter of “if”, but a matter of “when”. At some point, I will be required to take insulin on a daily basis. So far, my sugars only seem to spike when I'm sick and in the hospital. I have taken insulin a handful of times, but I avoid it like the plague. I'm just a big believer in not letting your body think that it can give up and rely on medicine. CF can also affect the liver, kidneys, gall bladder, joints, and other organs and parts of the body.

The other consequence of CF, that is not a direct function of the disease, is the affect that the constant stream of medications and antibiotics that are constantly being poured into my body. I take some stuff that the medical community considers “heavy duty”. When I am hospitalized, the doctors keep a close watch on my kidney and liver function. Medicine is often a double-edged sword. It may be helping me in the short run, but hurting me in the long run. I’ll tell you what though; running a long distance always encompasses a series of short runs. I know that I need antibiotics to enjoy life right now, I'll worry about the future when I get there.

I also wanted to mention the other “side effect” that hits home concerning CF. I can’t father children. Over 95% of CF men can’t. My vas deferens (the tube for sperm) either didn’t develop or is clogged by that lovely mucus. Now, don’t let me mislead you, there are ways for me to “make” children. It won’t be the normal path that most men are able to take though. It will require doctors extracting sperm from me, since I can’t extract it myself. To me, this is a big deal. Being a father in the future is one of my dreams.

In short, it seems to some that CF “has no bounds”. In some ways they are very right, but in other ways they are very wrong. What I mean is I strongly feel that CF can't touch your mind or your soul. Have there been times that I feel a little overwhelmed and tired of fighting? Of course there have. But I would allow myself to "grieve" only for the moment and then I would figure out what I could do to change the situation. We can't always change how CF is going to affect our bodies, we can, however, control how we respond to this disease. My last hospital stay was 50 days long. I could have easily sat there and sulked my way through all 50 days. My PFT's weren't responding and at some points I was very frustrated and confused. But sitting there asking questions and wondering "why" definitely wasn't going to get my numbers up. I walked and ran outside every day. I ran stairs everyday. I worked hard and put in a ton of sweat equity. The kicker is that my numbers still barely budged. I was in a situation I've never been in before: lowest numbers going into the hospital, longest hospital stay on record by two weeks, and lowest numbers ever coming out of the hospital. It's on me now. How am I going to respond?

(There are other ways in which CF has affected the body which I am not writing down today because I can only comment on my experience. If you have CF and are reading this, please drop me a note and tell me some of the "side affects" that I have missed.)