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.

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.

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?

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?

Yes, I’ve been eating more than my fair share of Doritos and Cheetos. On several occasions I’ve eaten an entire family-size bag in one day, though I have paid the price in upset intestines for the following 24-36 hours each time.

Slowly, but much quicker than is natural, I have formed what can be described as nothing other than a small beer belly. Every single shirt is now stretched around my mid-section and I’ve finally discovered my long-time favorite tailored dress shirt was about to bust a button when I did it up. I was simultaneously upset that it no longer fit and elated that I could officially no longer be considered to be “skinny as a rail” by any stretch of the imagination.

Ever since we started fostering, I’ve struggled with my weight. I’ve been up and down 5lbs or so from 113 since April and just couldn’t seem to break 120 again. Well, now I’m running a consistent 124-125 in the morning.

I’ve been having 1/4 to 1/2 a bag while I work during the day and then I’ll grab a Boost Plus, yogurt, Gatorade/tea, and finish off the bag at night after treatments… pretty much when all of my physical labor for the day is done, so it just goes straight to use becoming a permanent resident of my body instead of being used up.

Update

I actually wrote that in August and never got around to publishing it. I’ve kept it up, though, and both my weight and midsection are proof enough of that.

We also recently got back into buying blocks of cheese, so I’ve been having 3-6,8,10 slices of New York extra sharp and pepperjack cheese every day. It took a while for my body to get used to it, but I’m in a good enzymes to food ratio that is keeping me feeling more well than not.

I’ve been forgetting to drink my Boost Plus in the past two weeks, but I think it’s my subconscious being mad that when they changed the bottle dimensions, they added a foil pain in the butt under the cap that I now have to find a place to set when I grab a bottle.

Maybe I’ll have dinner, chips, cheese, and Boost tonight!

What are you doing for weight gain recently? How long did it take to get results?

Okay, pick yourself up off the ground. Here’s what happened.

I woke up with a wicked headache. Massive. 10 out of 10. Got through my treatments, but wasn’t feeling well enough to eat breakfast, which I attributed to the headache. Not too long after I got to my desk, I started getting heat waves, cold waves, started sweating, and had to sit very still to avoid ruining my keyboard with any sudden surge from my stomach.

I went back downstairs and got under the blanket on the couch. Then I threw it off and turned on the fan. Back and forth. No fever, though: 97.9, completely normal for me. I then realized I’d been to the bathroom about 6 times since dinner the previous day, so I sent Sue an e-mail about taking some anti-nausea meds we had laying around. They wanted me to come in for a GI x-ray to be sure I wasn’t blocked up, given my extreme nausea.

She called in an Rx for an anti-nausea med. Beautiful went to get it and I proceeded to pass out from trying to not puke. I e-mailed my clients for the day and told them I was out for the day. I also told her about my tender neck/throat and she said she’d let the doctor’s see my e-mail as further symptoms.

At clinic

Then my temp spiked to 100.9 and Sue’s plan changed to be seen by the doctors instead of going to x-ray. I hadn’t lost any considerable weight (2lbs) since clinic, had 98% O2 sat, but a 125 pulse and 100 fever. On our way to my room, we had a nice surprise seeing Kelli Stevens, the wife of another CFer at clinic. She’s on the cardiac transplant team, so she was there because our clinic is for both cardiac and lung transplants. He had his lung transplant over Christmas last year, so when we brought gifts to ICU, we had to leave them with the nurse.

Anyway, the first thing the doctor said as he looked in my mouth was that it was a wicked case of thrush. I’d explained in an e-mail earlier to Sue that my entire trachea has been sore to the touch since Friday (going on 5 days) and the doctor said that’s why. So, for those of you on Advair, gargle and spit. Dont drink, swish, and swallow – that’s how you get thrush all the way down your tract.

He said I just looked really dry and I felt really weak and helpless. He ordered 2L fluid immediately and stay on a plain, boring diet until the nausea and runs went away. Well, any time you want to get back home, things take forever and the fluids proceeded to take nearly 2 1/2 hours to go in. At least the clinic staff are epic compared to the main hospital staff. They brought me apple juice and a blanket and showed Beautiful the clinic food pantry.

We rolled out around 6pm and headed home to be a lazy bum all night.

Temperature control, please

Since I’d been in clinic, I needed to take a shower. I was shivering coming home and going upstairs, so I got the space heater out of the bathroom closet and cranked it on 1500W high and waited a few moments. Time to get out my long-sleeves and sweatpants. I ate some applesauce, drank Gatorade, and watched the Moonshiners marathon before the season premiere, which I fell asleep as the new episode started.

It was a complete wasted/wash of a day.

Summary

• viral gastroenteritis caused “bathroom issues”
• “bathroom issues” caused dehydration
• dehydration caused
  • headaches
  • nausea
  • dizzyness
• not swishing and spitting after Advair caused very bad case of thrush