In Which I Apologize for the Lack of Blogging

Update! I have no IV! My tests went up high enough that I'm still not perfect, but certainly better. I'm to finish up the supply of my new meds and then go in again for a final recheck, but I think I'm in the clear. Whoo!

Sooooo....I haven't been blogging a lot lately. The post I threw together yesterday was more of an attempt to keep things going than anything else (also, ceratopsids are awesome). I've got several posts up here in the ol' noggin, but they're not being put on virtual paper for one giant reason:

A recent doctor's visit informed me that my lung function tests (the barometer of a CF patient's health) were down 20%.

Twenty percent. Jesus Christ.

I'd also lost weight. Taken together, these symptoms indicate a bigger problem: a genuine lung infection, my first in eight years. Now, I should mention that last year, when I came back from London, my lung functions were also down quite a bit. My doctor suspected that I picked something up either on the plane or in Britain, but put me on Ciprofloxin and I got better. Six months later, I was back down, though not as much, and I was put back on Ciprofloxin. Last April, I was totally back to normal levels. My weight was up, my tests were great.

Five months later...I get a 20% drop and 3 kilos of lost weight? Ouch.

So my doctor put me on Ciprofloxin again and a new inhaled medication, which isn't so much medication as vaporized seawater (7% saline solution). He gave me a week to get better. A week later, my weight was up a kilo and my lung function tests were up 5%. That's not incredible, but it is progress. He gave me another week, so I'm going in again on Friday evening to see if I'm back to normal, or at least very close to it. If I'm not...well, it's time for a tune-up.

How do you give a CF patient a tune-up? You stick an IV in his or her arm and pump two kinds of medications in there twice a day (Tobramyacine & Ceptazadine) for between two and three weeks. It's more a hassle than anything else, but I wouldn't be surprised if I had to get one. I mean, eight years is a long time between IV's. What's this have to do with blogging? Well, I usually blog in the evenings, after work and chore and errands. Unfortunately, I'm on three different nebulizer-based medications this month: Pulmozyme, Saline, and Tobi. Altogether, it takes a full hour to do these meds, and I do Saline and Tobi twice a day. After my nightly doses, I have to clean and boil the nebulizers for the next day. So my evenings are basically shot for the month of October.

And when I'm not inhaling saltwater, I'm at the office or catching up on shows or games. Or, sometimes, drawing. I do get quite a bit of sketching done during my evening doses. None of it post-worthy, but you get the idea.

So there it is. Wish me luck for Friday, guys. Much as I wouldn't be surprised if it's IV time, it's not exactly fun to get one.

I Didn't Get an I.V. Yesterday

And I'm very happy about it.

The last few months saw a flare-up from the normal bugs in my lungs, and at my last doctor's appointment, my PFT's were down 7% since...well, October of 2008. My doctor prescribed Ciprofloxin, which doesn't always work on my bugs, with the understanding that if I didn't recover within 10 days, it was time for an I.V. I wasn't super-excited about that possibility, but I wouldn't be surprised either, since I haven't had a "tune-up" in seven years. Anyway, the Cipro seems to have knocked out whatever was causing a ruckus. He gave me another week of Cipro and there will be a recheck on my birthday, because my doctor is very paranoid. Better safe than sorry, I suppose. He also wants me to gain some weight, which is understandable. I'm below 170 right now, so I'll be eating like a pig for the next week.

I never talk about CF on the blog, but this was exciting. We now return you to your regularly-scheduled paleo/art/gaming blog...

Why I don't blog about Cystic Fibrosis

Some of my readers might not even be aware that I have cystic fibrosis. I've only blogged about it once and I have virtually no motivation to write any more about it. Even when an interesting PLoS Biology paper released in July trumpeting a potential cure for mucus buildup in the lungs of CF patients, I didn't really bat an eye. Some of my readers might be curious as to why.

Truth is, I do my meds every day and cough and wheeze sometimes, but CF doesn't give me much trouble. I may be blessed with a minor case of the disease. I've known plenty of patients worse off than me at earlier ages who were stricter about their medications than I am, and they got sicker quicker and most of them died. Honestly, I do a pretty crappy job of keeping myself healthy: I don't always do my Albuterol before my Pulmozime and Tobi, I almost never do the Flutter, and there are meals where I simply space out and forget to take my pancreatic enzymes. Part of this is apathy, plain 'n' simple, but part of it is that I know I can get away with it. I feel like my CF has leveled off somewhat. My lung functions are good enough that my doctor doesn't even question me not doing the Flutter.

But I do wonder sometimes. If I did do the Flutter every day, and I did do Albuterol before my morning routine, would my lung functions improve? There's never a day where the CF makes me feel crappy. I can take long walks, hike up mountains with my wife, and hit the gym with my friends. I never feel out of breath because of the CF, and if I do, it's because I'm really out of shape. Because of that, I'm not terribly motivated to increase my level of commitment to more meds and therapies. But then in the back of my head right now, my doctor is giving me that old mantra: "the goal is to keep your lung functions high for as long as possible." And it's true, there are certain low points that CF patients can't come back from. Once you lose a certain amount of lung capacity, you can't recover all the way anymore.

But I don't talk about it on the blog. Part of it is that I don't percieve it as interesting (it certainly doesn't interest me), but I also don't want to come off as whiny or self-centered (more than I do already). I equate yapping about my terminal illness with goth kids reading their weepy poetry to people. Now, if something I think is AWESOME (or really terrible) happens, like getting an I.V. or starting an experimental drug, you'll probably hear about it. But I'm not going to be giving updates. I won't let ya'll know what my latest FEV-1 rate is because it's not interesting. Same situation with my back. Getting a cortisone injection is wierd and cool, and like Glendon and Sean commented, it provides information to other people who might get that procedure in the future. It's informative.

I'm just not that CF Guy, and I can't do the subject justice. There are plenty of other people who can, though, like Ronnie Sharpe. And he does, often, and in a very engaging way. Check his blog out, seriously. He's a cool cat.

As for me, I'd rather drone on and on about dinosaurs and video games. If you readers out there in Readerland have any questions, leave them in the comments and I'll answer them as best I can.

Living with Cystic Fibrosis

Fellow blogger and artist Glendon Mellow recently encouraged me to write about Cystic Fibrosis, and a few months ago, Amanda was also wondering about it. I've never really felt motivated to write about the disease, but it seems like a good way to educate people about it. If you want to know the technical jargon and exactly how CF works, Wikipedia's got you covered. For my part, though, I thought I'd write about living with CF, because that's generally what people are curious about.

Well, it's not painful. The biggest hassle is that I take a ton of medications in the morning. Most are pills, but two are nebulized aerosolized meds which take 15 minutes (Pulmizyme) and one takes 30 minutes (Tobramicine). Then you have to boil the nebulizers and shake' em dry and maybe get new filter pads for the latter, and...I know I probably shouldn't be complaining, but it really does take forever. Then I use a chest therapy device called a Flutter. There's a steel ball in there, and the idea is to blow into the mouthpiece forcefully and evenly, thus causing the ball to rattle and moving sputum in my lungs further up until I can cough crap out.

The whole point of my routine is to kill or weaken the bacterium that live in my lungs, loosen the gunk that's built up in there, and cough it out. Right now, my gunk probably doesn't look a whole lot different than yours, except maybe it's thicker. When I'm actually sick, my gunk is green. Sometimes I'll get old green "pellets" out. These are pieces of sputum shaped like a BB and have been lodged in an airway for probably months. Feels good to get those out, although it's rare. There are certainly a lot of CF patients a lot worse off than me. I don't need oxygen (yet), and I haven't had an IV in five years or so. My weight is up (180 lbs) which indicates good health in CF.

I need to eat a lot. One of the problems I face is a pancrease that has essentially atrophied. I have to take artificial pancreatic enzymes with every meal, or else I absorb nothing, get horrible stomach cramps, and diarrhea. However, the same things happens if I take too many enzymes. I have to make a guess as to how caloric or fatty something is before I know how many caps to take. Oddly, the number of caps required to eat, say, a pizza, has gone down as I've gotten older. I used to take eight, but now I take six. Because my body doesn't process calories and fat very well, I generally eat about three times as much as a normal person. That means I'm wolfing down nuts, popcorn, cheese, milk, etc. with wild abandon and I barely gain any weight. Most people see this as a blessing, but it can be a curse, too! If I'm actively trying to gain weight, I have to eat past the point of comfort to make any progress. And if I'm ever sick, my appetite virtually disappears, but I have to force myself to eat to keep my weight up.

Doctors appointments are never enjoyable. My doc is a worrywart, and he orders plenty of hospital tests every time I get a check-up. Chest X-ray, sputum culture, bloodwork, etc. That stuff takes hours. Not necessarily because the procedures themselves are complex, but because I hate hospitals, especially the one I go to. Dropping off a time-sensitive sputum sample? Well, just sit and wait for God knows how long so you can get preregistered. What? You were here just last month? Too bad! We forgot who you are!

It's retarded.

When I DO have to get an IV, it's not so bad because it's always a take-home, but the darn tubes catch on everything on the planet. They're living organisms, and will purposefully reach out and get tangled on crap I'm not even near. The tube has a tendancy to get clotted up with medication or regrowing vein tissue (yuck), and the little computer sensor that I carry around starts beeping, and sometimes this happens at like 3 o'clock in the morning and...yeah. Even getting the IV put in isn't that bad, but dealing with it is a chore.

Really, that's what CF is, to me: more of an inconvenience than anything else. I have to drag my nebulizers and air compressor around anytime I fly anywhere, and those electricity-demanding machines prevent me from going on extended camping trips or digs at the Colville. But, you know, small price to pay, I guess. The only times I really feel sick are when a big piece of sputum has successfully moved into the main branches of my lungs. That is, of course, a good thing, but it takes a lot of huffing and coughing and Fluttering to get that sucker out from there, and it's exhausting. It's not like I can just let the stupid gunk sit there, either, because once it hits the major airways, I can't take as deep a breath anymore.

I have to thank my lovely wife, of course, for basically keeping me alive. When I met her (back in college), I was in pretty bad shape, but she kept (and keeps) me regimented, which has made all the difference in the world. She helps me make good food choices and tells me to go lay down when I obviously need to (but stubbornly won't). She's an angel, and I can't thank her enough.

Honestly, my back gives me more trouble than the CF does. I should re-write about that sometime, because that particular post was deleted when my old blog came down. My back, in fact, has been killing me for the last three days! Hell, where's my vicoden?