Re: And Finally... Thing #3

This is my final (and my favorite) repost from 2011. Share it with all of your friends and family - we need to raise awareness about PCD! And while you're at it, find a way to follow Life Before the Bucket! Happy New Year!

Picture this:

You wake up in the morning. You cough a few times, and a little phlegm comes up. You hardly notice and swallow it, willing yourself to find the energy to move out of bed. You crawl out, walk out of the bedroom, and quickly find something to drink - you know it'll be painful otherwise. 

Unfortunately, you don't reach the kitchen in time. The coughing begins again, only this time, you can't suppress it. It won't stop. And you're not even coughing anything up! Next thing you know, you're desperately swallowing air, trying to keep from throwing up the contents of your stomach. You fumble through the cabinets for a cup as you're still trying to control your body. You quickly run it under the sink - oops, the water was on warm (no time to worry about that now) - and take a swig of the lukewarm water.

Your chest depresses, your shoulders relax, and your breathing slows a little. You might still cough, but for whatever reason, it's controlled now. And now you're out of breath from walking to the kitchen.

You lean on the counter for support. You huff and you puff, but there's very little respite besides waiting and hoping your heart rate and breathing slows. A few minutes later, you've caught your breath enough to make some coffee. At least this part of the day isn't so bad...

Sounds rough, right? 

It is.

That's life as usual with my lungs. And that's only the first 10 minutes of the day.

So without further ado, I introduce Thing #3 to you...

Thing #3 is... Primary Ciliary Dyskinesia.

Ugh. My misplaced heart sinks a little just typing it.

I know, I know. You're scratching your head again. Hopefully, you've already read about Thing #1and Thing #2. If not, you really should. They much more upbeat and fun. If you've already read about them, though, you should have figured out that all of this is too wacky for anyone to make up. I do, indeed, have three diseases that any spelling bee champion would be proud to spell: situs inversus, hydrocephalus, and primary ciliary dyskinesia.

Now if we want to get technical, doctor's actually describe the combination of Thing #1 and Thing #3 as Kartagener Syndrome (which is a lot easier to say and spell). Statistics say that approximately 10,000 people in the United States are living with this diagnosis. However, not nearly that many people have actually been diagnosed. The backwards heart and organs is pretty obvious. The lung disease? Not so much.

Primary Ciliary Dyskinesia (PCD) is, quite frankly, a pain in the butt. The overly simplistic way that some doctorsmay describe it is that it is similar to Cystic Fibrosis (which a lot of people have heard of). However, that's just not true. PCD is not CF. However, because PCD is so stinking rare, it's treated like CF, because that's alldoctors know how to do.

The best way I know how to explain PCD is as follows. Basically, you have little finger-like entities all over your body called "cilia." These little fingers work to keep things flowing. Unfortunately, my cilia are dysfunctional, sluggish, and just don't work right (for whatever reason). As you can imagine, this is a problem.

Because these fingers in my lungs don't work, my lungs collect mucus. Lots and lots of mucus. Buckets worth, I'm sure (though I've never coughed up that much). And as this mucus collects, infections occur. And then my lungs get sick, get damaged, and I can't breathe. Throw a little asthma in there, and breathing becomes really fun. 

Treatment is, in a word, stupid. I'm grateful for the great doctors I have, and they take great care of me, but much just isn't know about how to treat this disease. It's so rare that research on it is difficult, and therefore, treatment is usually just a hit and miss sort of thing. Here's a taste of what I endure enjoy every day for my lungs:

First of all, there's this little toy. This bad boy is called a nebulizer. You might have seen one (or even used one) before, because they're often used in hospitals and emergency rooms to administer breathing treatments.

Basically, what happens is I put a little vial of liquid into the canister you see here, and the machine turns it into a vapor that I can inhale. I am able to get more medicine into my body this way, as opposed to using inhalers (though I do have a few of those).

Here, you can see boxes of two out of the three nebulizer medications that I take on a daily basis. In fact, I have to take all three medicines twice a day, minimum. Three to four times on a bad day. And let me tell you, that time adds up quick.On average, I spend an hour a day doing breathing treatments. 

The breathing treatments actually help a little, mostly because they're designed to aid my asthma (which people actually know how to treat). The medicines pictures here are combined into the nebulizer and really help my breathing for an hour or two after I take them.

The other medication I use is actually used for people with CF, but it seems to help my PCD, too. It thins out the mucus in my lungs, making it easier to cough up. However, that's the hard part: actually getting the mucus out of my lungs. It requires a little work, because it doesn't just magically appear, turning itself over to be disposed of (though that would be awfully nice!).

Instead, I get the pleasure of being beaten to a bloody pulp twice a day for twenty minutes (and more on a bad day). The instigator? This thing you see pictured to the left.

I like to call him Thor.

Affectionately so, of course.

Thor is a good friend of mine. He's been in my life for over 10 years, though he recently got an upgrade. Basically, what Thor does is he pumps air through the tubes you see in the picture into a vest (which is on top of the machine). The vest is strapped onto my body like a life-jacket. The air pumps in, it beats me senseless for twenty minutes, and I hope it helps.

My wife has all sorts of amusing descriptions for Thor. However, I think Thor probably deserves an entire post of his own, so I'll let him rest... for now.

This is a lot to digest, I know. Just stick with me a few more minutes.

To be frank, I hate Thing #3. It sucks. Or doesn't suck, I guess, because if it sucked, it would mean I could breathe...

Thing #3 wouldn't be such a problem if it could be aggressively treated. However, this is the Catch 22 of my marriage. When we were wed, we lost our health insurance. And ever since then, I haven't been able to get it because it's either too expensive or it won't cover my diseases.

Now trust me when I say I wouldn't trade my marriage for anything. However, not having healthinsurance is a pain in the rear. I can't see specialists, I can't afford treatments or certain diagnostic tools (such as CT scans), and therefore, Thing #3 only gets worse.

I know, I know. I need to get off my bum and get a job. That's what most people think when they hear about people without health insurance. That's the problem, though. My lungs are in such bad shape that I can't work full-time. I'm barely hanging in with my internship, and that's a job where I sit all day and only move when absolutely necessary. And even then, I hack my lungs up a few times a day.

There's really not much I can do about it right now, honestly. I'm currently applying for disability at the ripe old age of 21 (I was already denied once when I was 19) and praying for the best, but I know that the government isn't supposed to be my savior.

However, my mother-in-law, in her infinite wisdom, thought of something I should have come up with more than a few years ago. She has set up a health fund in my name.

Now let me say this, first and foremost. I am NOT a charity case. I hate the thought of ever being paraded around like someone who is helpless and can't forge their own way in life. However, I also know that there's pride in me about this that doesn't need to be there.  

That is why I'm telling you about this.

My mother-in-law has set up a Facebook page where she keeps everyone posted on how I'm doing and stuff going on with Thing #3, and I'd love it if you would check it out. Just search on Facebook for "Adrian Waller Health Fund." Or click here to request to be part of the group.

I'd love it if you'd join, just to keep updated on how I'm doing. And if you feel able to help financially, I wouldn't argue with you. We have a bank account setup called "Adrian Waller, Medical Expenses Fund," and I use the money to help pay for appointments with doctors and medicines (which add up a lot faster than you think). If you're interested in helping out, but have questions, you can send me an e-mail at (awaller1990@gmail.com), and I'd be glad to answer any questions you have.

Basically, though, I'd just love it if you prayed for me. Life is hard. Very, very hard. It's hard not to be able to do things that normal people do. It's hard to not be able to walk without wheezing. It's frustrating to me that my condition keeps me from doing things I love: sports, singing, and sometimes even writing. But I know that God is taking care of me. He wouldn't have allowed me this far only to let me shrivel up and die. So I'll keep fighting, because I know I'm alive for a reason, even if living is hard most days.

Thanks SO much for caring enough to read. Please, please, please share this with your friends. It would mean the WORLD to me.