Cystic Fibrosis Fatboy — Page 22 — The daily quest to gain weight

Post-Clinic Update

September 24, 2011

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

September 22, 2011

Tomorrow 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.

One 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.

Growing up With CF – Normal or Not

September 19, 2011

My usual eloquence is gone today, so pardon the skitterish path my thoughts take as I write this abnormal mess. It’s more for others – the younger generation coming along behind those of us already decidedly in what is known as “adulthood.” I fully intend on this to be more questions than statements to promote discussion and give hope to our young friends who may be struggling with their health, fitting in, and wondering if they will make it to our stage of life.

Remember when you had to sit inside on a sunny day doing treatments whilst your friends or siblings were outside playing? Remember missing school and falling behind your classmates and your teachers giving you extra work to catch back up to advance to the next grade? Remember feeling different because you had to go see the nurse every day to get your enzymes for lunch?

How did you feel when you weren’t as big as your classmates. How often were you picked last for teams in gym class? Did you have to give up playing your favorite sport(s) at some point because you couldn’t keep up (at best) or because it would be too dangerous, or because you didn’t make the team due to something CF-related (at worst)? Did you get turned down for prom or homecoming or not ask your crush because you were a bit of an outcast?

How often did you think you wouldn’t make it to high school/college/marriage? Do you still have fears of not making it to your next goal? What do you do to overcome those fears and keep on going? Were your fears unreasonable because things were not often as bad as they seemed at the time? Have you had to give up dreams of having a certain profession because there’s no way you can do it with CF? Have you lost friends or relatives to CF? When all is “normal,” do you even think about having CF?

What is the longest time you’ve gone without IVs/hospital stays? What’s the shortest time between IVs/hospital stays?

What is your greatest accomplishment – most especially despite having CF?

Let’s all contribute a little story about growing up to encourage our young fibros and cysters.

Life goes on, and so will yours. Don’t dwell on the worst case. Plan for them, but don’t dwell.

Why Is My Poop Green?

September 9, 2011

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 PeopleofWalmart.com 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.”

It 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?

Post-Clinic Update

September 24, 2011

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 … [Read more]

Quick Update Before Clinic Tomorrow

September 22, 2011

Tomorrow 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 … [Read more]

Growing up With CF – Normal or Not

September 19, 2011

My usual eloquence is gone today, so pardon the skitterish path my thoughts take as I write this abnormal mess. It's more for others - the younger generation coming along behind those of us already decidedly in what is known as "adulthood." I fully … [Read more]

Why Is My Poop Green?

September 9, 2011

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 … [Read more]

Here’s where the title comes into play

Time Elapsed Since IVs