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Post-Clinic Update

What a day! What a night!

We got to clinic to another empty waiting room and got back for PFTs before too long at all, as usual. You’ve probably guessed by now that I have very little tolerance for being scheduled when I have to sit around and wait for other people, so the first appointment is the way to go. It meant getting up at 4:30, but it’s worth it.

I got my first look at my FEV1 after my first blow: 38% (last clinic was 35%)! I went again with even more force and got a 35%. Remembering our long PFT in the Spring when we determined that I was collapsing my airways by blowing too hard, I backed off for my 3rd attempt: 39%! Boo, yeah! That sent me to rockstar status, as it was my highest number on the computer’s history visible on the printout. My lowest was 27% when I was on a placebo for a drug trial that required stopping my AZLI study drug. Bad move!

Since last clinic, I’ve gained over 200mL of volume, but I still feel like crap. Our only guesses are that I was coming off fighting off a cold last weekend when I had a fever or else I’m getting so much gunk loose, it’s making me feel worse than my numbers show. Sue thinks I’m pretty funny to feel bad and then post numbers like that. It seems like when I put weight on how I feel, they’re interested in the numbers and when I concentrate on how my numbers are, they’re interested in how I feel. Whatever, my IV streak continues (see the sidebar counter).

I also asked for a t-shot blood level, flu shot, and my quarterly Boniva shot. Anyone else getting the Boniva shot? [Read more…]

Quick Update Before Clinic Tomorrow

Outrunning AgainTomorrow morning is clinic day. It’s also the first time I get to meet the newest and third doctor on their staff at New Lung Associates out of Tampa General Hospital. I remember the first time I met the second doctor. Allow me a moment of fond memories of a time long ago.

It’s been about 6 or 7 years now, I suppose, when I first met Dr. Tarik Haddad. I was feeling like crap: wheezing, run-down, and lots of gunk when I coughed. Since I was labeled as “sick” coming in, he came in with full paper apron, mask, and gloves. After checking me out, he asked me, “so what do you want to do?”

Excuse me, you’re the doctor! You’re supposed to tell me what to do and then I tell you how I feel about that plan. I sort of said just as much. I’ve been trying to remember all day whether I went home to await home health for my IVs or if we tried some failed antibiotics first, but that was about the time I was on IVs every 3-6 months for a few years. He’s much, much better now and has grown into the job at the busiest lung transplant center in Florida quite nicely. I like both of my doctors, and word on the street is that the new guy is so nice he almost doesn’t fit in.

I have my moments of feeling like crap (like this exact moment before doing my treatments), but most of the day has been terrific. I even took some extra-deep breaths today while I was coding my heart out to get a lot of work done before taking most of the day off tomorrow. Speaking of coding, check out what I did to Beautiful’s site. We love it, but what do you think? She’s got great ads and has free products arriving to have a give-away. Exciting!

Beautiful said she won’t fight it if they want to put me on IVs because her excellent intuition has been beeping for a few months about my cough sounding worse and she said I smelled like tomato soup in the middle of the day yesterday. It’s been more than a year and a half and I’ve kicked a few resistances according to my cultures recently. Maybe they can put me on some low-grade meds to save the really good ones for last resort measures later to buy more time. Speaking of that thing I didn’t just mention now, I have exciting news I’ll be sharing tomorrow about that thing I’m not mentioning that happens down the road… just wait.

After clinic, we head across the complex to see Dr. Tabor for my monthly ENT visit. It’s actually been more like 6 or 7 weeks this time because we were supposed to go when we were still in Ohio caring for my grandpa right around Labor Day. I’m still feeling pretty good in my sinuses, so I think we have a good routine going. I’ve also heard recently that big diet changes help sinusitis, so that may also be contributing to my better condition since we changed so much of what we eat.

MediaTemple - (dv) serverOne last thing: I’ve recently migrated our whole family’s collection of sites/blogs to a dedicated server. Basically, we are isolated from other peoples’ sites and bad security choices, as well as dedicated resources to run our databases, images, and designs without waiting for the server to do other peoples’ things. It’s taken me the better part of 3 evenings and a good chunk of today to learn how to set it up, then move the sites, and then fix any nagging items, but I’m all done except my company site. So tell me, is it faster than before? It sure is quicker in the dashboard and loads all of my sharing buttons faster. Here’s a link if you want to give it a try or get it and expand into the realm of self-hosted yummy-ness.

Why Is My Poop Green?

Don’t let the title turn you off – this is going to be one hilarious post that has nothing to do with my poop. Yesterday afternoon, one of my local friends (my programmer, actually) tweeted a link to a story that compelled me to click it to read. I not only read it, I coughed up a lung. Now, I know I think I’m all this and that with my writing style and abilities (within reason), but this was beyond being abnormally good stuff.

When it came time for my evening treatments, I hunkered down with my iPhone’s tiny screen and started from today’s post and worked my way back. By the time I’d reached the end of May, I’d finished my treatments, filled several tissues with goop, and even made a mess of my shorts when I didn’t have a tissue ready.

Yes, it was that funny to me.

So, when Beautiful came downstairs after writing her post for the day, I tried to pick one of the stories that was both short enough to hold her interest and not so crude that she made me stop. I let her know that she has her “mommy blogs” that she reads and I finally found a “dad blog” that I was as addicted to as we were with when we discovered it. I couldn’t really come up with any examples after just reading nearly 20 posts, but assured her that it was doing me good.

We discussed the topics and amount of material others come up with and concluded it’s because they have KIDS. It’s like having an endless source of comedy, drama, and tragedy at your fingertips.

Here’s where the title comes into play

When we rolled into bed, exhausted (still) from our road trip, she said she’d like to read some of the things that were so funny. I’d reached the site through Twitter, which I’d cleared out to view my stream again, so I had to Google for that post, so I started with the website name with “Why is.”

Why is my poop greenIt was at this point that I started coughing and laughing uncontrollably again. I had to sit up and finish my outburst, even. I flopped back down and showed the screen to her. Google had many guesses to finish my phrase, beginning with “why is my poop green” and it was just too much for me to handle. I’ve heard of some funny Google guesses before, but this one grabbed both lungs, ripped them out of my chest, and shook them for a minute.

After finishing the query, I found the exact post I was looking for. She read the whole post without even cracking a smile. Huh!? “What is wrong with you?” I wondered. Alright, there’s no way she won’t find the post that I read first, the one from my friend, hysterical.

I’ve been known to be wrong – a couple of times in my life – and this was a time where I was wrong. Again, nothing funny at all in that post.

Regardless of whether anyone else finds it funny or not, it was a better treatment for me than my Vest an aerosols combined, so I’m going to keep it up “for health reasons.” This is the sort of thing that Larry the Cable Guy says, “I don’t care who you are, that’s funny!” to… except most likely my entire immediate family, leaving me all alone in my humor zone.

I can’t leave it there, though. I have to know which of my friends find this funnier than green poop, but my putting this link below comes with a caveat and two pure warnings.

Caveat: this is written by a guy, clearly mainly for guys, so it’s possible many women won’t like it, but many housewives comment.

Warning 1: there is adult language, so if you mute movies when you know a cuss word is coming up and plug your fingers in your ears around construction workers, please, skip it.

Warning 2: you may become addicted.

Ok, now if you read this, you are obligated to let me know what you think of it in the comments so I know if I’m going nuts or if it’s just that I worked in construction too long.

The site: Why Is Daddy Crying?
The post: The Boy Drops The F-Bomb

Okay… I just made your day, now make mine. What did you think?

Superhuman Strength

I’ve written before about some things I’ve done growing up, such as marching band playing a bass drum, midget football, 4 years of baseball, track and field, and years of rough-playing recess at school. A reader requested a topic today and I agree with her that it makes for a fine discussion.

Hollie said:

I’m a fellow CFer as you would say. I think your posts are great and I am so glad to know you don’t wallow in self pity like a lot of other people with CF do. I know growing up wasn’t the best. I went to one of the best CF clinics in the US it was at Chapel Hill, North Carolina. Funny thing is doctors told me and my brother who also has CF that we would NEVER be able to do any kind of sports and basically just drag us down. Well guess what, my brother played soccer, baseball, football, and wrestled. I ran cross country, cheerleaded for basketball, and played soccer. I think you should do a post that highlights what doctors or even what others say and how other people with CF deal with it. Personally I think it’d be pretty cool. I am now 22 years old and have a fiance and a beautiful 4 month old daughter, thank goodness she doesn’t have CF but others should know that just because they have CF not to let that stop them from doing something that they want to do.

Sounds like a good topic for our group, so let’s dive in. Since I’m writing, I’ll follow Hollie’s lead and start things rolling.

My childhood clinic was the Toledo Hospital with Dr. Vaughty and Dr. Reddy. Some others came and went, but they cared for me from about 9mo until my 16th birthday. I don’t recall them ever telling me I wouldn’t be able to do something. I do know they predicted my parent’s marriage would end early (from stories, and it still hasn’t after over 35 years), but if they ever said something about my abilities, it either wasn’t to me and didn’t get passed on to me or else I’ve deeply repressed it because I’m a stubborn son of a gun. In fact, Dr. Vaughty had a standing agreement with all of his patients that they could drive his Porche to prom. Not sure if he didn’t think we’d make it or if he’d kick off first, but I remember that.

Unfortunately, I had prom in Florida and drove a 1992 Dodge Caravan to prom… I should give him a call while we’re in Columbus and go for a joy ride around I-75.

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