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And We’re Back

The site is back for now, mostly as an archive to help CFers who are looking for info. I’ll be deleting content in the coming days to make it a tad more anonymous and with less identifiable material.

I hope you enjoy reading some of the classics and notice the time since last IVs in the sidebar. Yup, my PFTs have gone nowhere but up since 2012, either. Not down, get IVs, and up again, down, up. Up, healthy, cold season, healthy, up, flu season, healthy, up… etc.

Final Post on CF Fatboy

As One Door OpensThis is going to be the final post on CF Fatboy due to the increased government involvement between government agencies and the healthcare system. Too much of our lives are posted here as information that can be found regarding my meds, finance, insurance, hospital visits, foster care, etc.

God Save Our CountryAs we decide on a response to the healthcare changes that have been forced upon our family, this information must be as hard to find as possible.

I’ll be taking the site down on Monday and archiving it for a later date should these concerns be put to rest with new or repealed legislation. At such a time, I can easily bring it back to life. Yesterday was the end of the Facebook page – it has been scheduled for deletion. Thank you to the 400 fans there. Perhaps it will come back on the next great social network when the time is right.

It’s been fun. Thanks for reading and participating in our journey together.

Stay positive – the cure is on the horizon.

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

Pseudomonas aeruginosa

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

beard-duck-dynasty-pillowIt’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.

And We’re Back

The site is back for now, mostly as an archive to help CFers who are looking for info. I'll be deleting content in the coming days to make it a tad more anonymous and with less identifiable material. I hope you enjoy reading some of the classics … [Read more]

Final Post on CF Fatboy

This is going to be the final post on CF Fatboy due to the increased government involvement between government agencies and the healthcare system. Too much of our lives are posted here as information that can be found regarding my meds, finance, … [Read more]

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

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

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]