Life with CF

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

February 24, 2013

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

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.

The Evolving Cough of Cystic Fibrosis

November 22, 2012

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?

I Don’t Recommend This Weight-Gain Tip

November 21, 2012

I’ve been on a binge recently. A bad binge. Lots of saturated fat and food coloring.

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?