Cystic Fibrosis Fatboy

Feeling Sick. I have Asthma. Pseudomonas-free at Last!

February 24, 2013 3 Comments

P. aeruginosa

You’re going to enjoy this story, trust me. We all know and hate “good old” pseudomonas aeruginosa with a passion, right? It’s resistent, it never really goes away, and we have to take 3x more meds for it than anything other than airway assistance.

However, with all of that struggle comes familiarity. I smell like tomato soup when I have an epic bloom of P. aeruginosa. It turns to Corn Chex when I have staph take over the show. When things turned a nasty smell about 3 weeks ago, Beautiful got concerned.

Strange symptoms

For many weeks now, I’ve been clearing out plugs. They are spongy and shaped like the alveoli (or so I imagine from anatomy classes). They were concerning for a couple of days, but then I concluded in my massive years of wisdom hacking up gunk that this was a good thing. It seemed that I had reached the bottom of my lungs.

Then 3 weeks ago I started back up with really liquid gunk. The color changed from my usual manilla beige to a camo green. The smell was overpowering in the car when I’d let loose with a good spasm. Someone in the car would have to cover her nose for a minute.

We finally decided that if I wasn’t better the Friday before last that I’d go in to clinic. I had several days I’d get better and then get worse. I felt hot and clammy but my temp never rose above 99.2. I had body aches. I had a really stuffy nose… for one day. I had no energy for the entire time. Try to sleep in, try to get up later – nothing was working.

Clinic

I gave them a fresh culture on Monday and they told me to come in on Friday to see what was going on. My PFT from a month ago (read: 1 week before getting what I have) was a 40%. That was down from the 43% prior to that. On Friday I blew a 41% – stable. I’ve been stable and slowing increasing for 3 years now.

“Why do I feel like utter crap?” I asked our newest doctor on the team (who has improved a TON, by our evaluation of the appointment). He said the flu shot has been 30% effective this year, but I didn’t have a fever. He said RSV is rampant, but I didn’t have those symptoms (which I also concluded via WebMD and 2 other gov’t sites on Monday). He said what healthy people are getting knocks them out for many weeks and Beautiful said at least half of the husbands of the CF Wives Facebook group are in the hospital or dying now.

What do I have?

Asthma.

Yup. Asthma. In fact, I am not even remotely sick. My culture came back today free of any P. aeruginosa. None. I have Alcaligenes xylosoxidans or Achromobacter xylosoxidans and only a light growth, at that. Light growth of one bacteria. I don’t remember the last time I didn’t have P. aeruginosa in a culture and one of the more recent cultures it was all the way up to “heavy” growth. I wasn’t sick at all – far from it, in fact.

Treatment

Every day around 1pm, I start to get short of breath and even wheezy. It escalates until dinnertime and then I need to do my treatments. His suggestion: use your rescue inhaler every 4 hours because my Albuterol nebs only last 4-6 hours, so keep the inhaler handy. I can even try to stay ahead of it if I want.

My asthma has reached a point where stress induces a tight chest and wheezing. Even today, I was discussing a stressful topic with Beautiful and I felt it come on and I took a puff. She’s so awesome, we changed the subject and carried on while it took effect.

Fatboy the Busy, Semi-Famous Hermit

February 13, 2013 1 Comment

It’s interesting, as I think you will find it to be, also. People online are taking over a more important role in our day-to-day lives than people we see in real life or who have had a vested interest in the past. Sure, it’s happening to some more than others, but I’m confident that it’s more than “some” in our case, or at least my case if I’m being careful to not put words in Beautiful’s mouth.

I’ve recently gone through a social media transformation to eliminate both noise and stress. Life is more relaxed online now and it’s allowed me to see neat, nice, and relevant people better. I’ve met more people like me with my interests who have just enough of a “fringe element” to them that they introduce me to cool sites, code that helps me do what I do, and even new music to work to.

While we still need a few friends, and those of you know exactly who you are because you kept reaching out over the past few months, my industry has greatly lessened my dependency on getting out and seeing people. I’m such a hermit now, I don’t shave, leave the house once, maybe twice a week, and I can’t help but be a bit weird when I do get out.

After all, most of my talking is done with my fingers. What is this thing making vocalizations I can hear?

Business is booming. I have projects lined up until June and have undoubtedly my most important client call this morning, as well as my most complex launch today. Oh, and if you want to read some about exactly how geeky I am, my ultra-elite hosting company featured me on Friday as their “Finely Tuned Consultant” of the week.

Why I’ve Left Facebook for Google+ – Part 2

December 1, 2012 Leave a Comment

I love Google+! Within an hour of re-installing the app on my iPhone (and my Android tablet shows it off even better) and finding all sorts of interface improvements since January, I knew I’d rather be over there… but all of my “friends” were still on Facebook. What was I going to do? Oh no!

New friends

I made new friends, duh. Lots of them.

I sought out photographers and put them in my circle for photographers. I found Canon users and made a circle just for them, as well as adding them to my photography circle. I added tech sites like Ars Technica and Wired to have great articles to read. Most of my tech friends on Google+ (who were also on Facebook and/or Twitter) posted articles rather than status updates. Google+ isn’t about statuses. It’s about sharing information and collaborating and having hangouts (very cool) to get to know each other better and expand your knowledge or horizons.

I’ve also noticed that most people mostly keep their political news to themselves, but there’s a decent portion who will do one post every day or so. It’s sort of like keeping to the safe topics at the dinner table. However, when a political person or entity posts something, then the comments can get really vicious really quickly. I think the difference between Facebook and Google+ in this respect is not everyone is actually a friend, so they feel like they can say anything if they don’t know you… however if they’re not your friend but are fans and are friendly, they keep their comments to themselves. I don’t see much, if any, going out of one’s way to be rude in comments.

Some days, Facebook statuses put me in a plain old foul mood. “How could people actually have these world views?” was a constant irritant to my sense of justice and right-ness. That has gone away because I don’t often find controversial quotes or the like on Google+.

Stop tooting

Another interesting life change of using Google+ instead of Facebook has been a sharp decrease in anything that could be construed as bragging. That’s what a significant percentage of statuses are… “look at me, Daddy!” syndrome for adults crying out to all of their friends and enemies. I’m guilty as charged, too. Wilhelm Hofmann from the University of Chicago Booth School of Business says this about constantly being connected to social media,

“Ask yourself: How important is this, really? How happy does it actually make you?” he said. “Harness that feeling of pride when you do resist and stick to it.”

Status mindset

The constant thinking in status updates is gone because there are no status updates on Google+ if you’re using the platform correctly. The early adopters set the rules and the rules state that you’re boring if all you do is type statuses without links, images, or videos. Google+, like I said earlier, is about passions. Passions are worth more than words… or at least your readers deserve a nice photo while they read something you write because that’s how the platform was built for tablets and phones.

There’s a movement

It seems like every week, I read a blog post by another person who completely deleted their Facebook account and has noticed massive changes in their life. Here is a good one from September that you should read, if for no other reason but perspective.

I have to say, I feel better by only spending about 5 minutes per week on Facebook. Have you left yet, or at least started using Google+ more?

The Evolving Cough of Cystic Fibrosis

November 22, 2012 4 Comments

You know that time after a cough when you put your heads in your hands with a pounding headache?

Or when you nearly choked yourself into puking?

Or the huff cough that is a nearly never-ending cycle that brings family members around from other parts of the house to be sure you’re okay?

Welcome to the wonderful evolving cough of CF. It seems like every 6-9 months, I go through a period of uncomfortable coughs that are so vastly different than normal, they physically tax my system.

Types of cough

One time it will be a brain hemorrhaging headache that requires an immediate Vicodin and periodic Tramadol when I can be sure I’m taking one 2 hours before a coughing spell. I still have a headache from some earlier in the day. Wouldn’t you think someone would remove the meat cleaver from my forehead by now? Sheesh!

The next evolution will be so strong, my ribs hurt from using normally forgotten muscles.

Then I’ll go through gagging coughs in the shower, every shower.

Then it stops as quickly as it started

All of a sudden, I’m back to a normal cough, as if nothing changed. I can’t wait for my current evolution to evolve again, but until then, at least they make little white pills for that.

Hello, is this mic on? Anyone else have coughs that evolve?

Feeling Sick. I have Asthma. Pseudomonas-free at Last!

February 24, 2013 3 Comments

You're going to enjoy this story, trust me. We all know and hate "good old" pseudomonas aeruginosa with a passion, right? It's resistent, it never really goes away, and we have to take 3x more meds for it than anything other than airway … [Read more]

Fatboy the Busy, Semi-Famous Hermit

February 13, 2013 1 Comment

It's interesting, as I think you will find it to be, also. People online are taking over a more important role in our day-to-day lives than people we see in real life or who have had a vested interest in the past. Sure, it's happening to some more … [Read more]

Why I’ve Left Facebook for Google+ – Part 2

December 1, 2012 Leave a Comment

I love Google+! Within an hour of re-installing the app on my iPhone (and my Android tablet shows it off even better) and finding all sorts of interface improvements since January, I knew I'd rather be over there... but all of my "friends" were still … [Read more]

The Evolving Cough of Cystic Fibrosis

November 22, 2012 4 Comments

You know that time after a cough when you put your heads in your hands with a pounding headache? Or when you nearly choked yourself into puking? Or the huff cough that is a nearly never-ending cycle that brings family members around from other … [Read more]

Cystic Fibrosis Fatboy