Tuesday, June 25, 2013

Cystic Fibrosis ALWAYS Gets Worse

Cystic Fibrosis always gets worse. It can't get better once you reach ____% lung function. Once you start going into the hospital multiple times a year, you'll probably go multiple times a year for the rest of your (short) life. When you lose lung function, you can't get it back.

Any of that sound familiar? I really hope it doesn't, but I have a feeling that some of you have heard all of those things a time or two. I know I did growing up, and the sad part is, I actually let myself believe some of it. I fell for the part of CF getting worse year after year hook, line and sinker. I was reserved to the fact that I would lose a little bit (or a lot bit) of lung function each year and there wasn't much I could do about it.

I mean, that's what my friends with CF said. That's what I read on the Internet. That's what I heard some CF docs say. It must be true then right?

Wrong. It's wrong for so many different reasons that I don't have the time to list them in this blog, but I'll tell you the biggest reason that it's wrong...

I got caught up in thinking about all of the things that CF could do and lost focus on what I was doing.

That becomes the problem. When we are so concerned with what could happen with our health that we let it distract us from actually doing something about our health now, we have an issue. I totally get it as much of society is stricken with the "it-must-be-somebody-else's-fault" bug.

If we don't feel well, it has to be because of CF. If we're having a bad day, it must be because of CF. If we're mean to our friends, it must be because of CF. If we flunk a test, it must be because of CF. If our lung function declines, it must be because of CF. And on and on and on we go, blaming anyone and in this case, anything else, before we're willing to look in the mirror and realize that we're the problem.

It took me 8 years of declining lung function and 52 days in the hospital to realize that. It took me not being selfish for the first time in my life and actually putting a special girl's needs in front of my own by actually taking care of myself the way that I should. It got cemented when I brought another special girl into this world and made a promise to her that I would always work my booty off.

What's it going to take for you to change?

And I know, I know, there are people out there who will say, "I never miss treatments and I always exercise, but my lung function continues to get worse." Yes, that can be the case (I used to exercise and do my treatments too while seeing my lung function decline - I just wasn't doing as much as I obviously needed to). It however is the case that you're lung function will decline if you don't do your treatments and you don't exercise. . It is also that case that some people wait for far too long before they finally decide to "never miss treatments and always exercise". To be honest, I was almost to that point 4 years ago, but by the grace of God was able to fight back.

So what brought this blog on? I had my 1 month post-hospital clinic visit yesterday and for the first time in 12 years, I had a FVC of 92%. My FEV1 was 75% which is still up from my "baseline" of 50% in 2009 that they said I'd probably stay at. They were wrong.

If you'd like to get healthy, do what you do in spite of CF. No matter how CF decides to act tomorrow, you just make sure to out work it. If your disease is being a little more aggressive, than you must be that much more aggressive. If things are getting better and CF is slowing down a bit, celebrate by kicking it's booty even harder.

I know you can do it, now you just have to believe that you can and will do it!!