clinic

Assorted pillsMy annual clinic appointment was today, a month late for my 2011 annual, but that’s where it belongs in the timeline. Overall it was good news, but we had some very good dialogue with the doctor about quality of life vs the PFT numbers and what the picture is now and what it looks like for the future. Prepare yourself for a long post because I really don’t want to break this one up over the week.

Good news first: I’m not dying. I’m also not expected to be on the transplant list any time soon. The rest is a big bag of mixed nuts that will take us a while to sort through. I really hope that you find this informative as an “aging CFer” to know what is ahead for those younger than me and also encouraging and transparent for those in the same inning as I am – that’s 33 for those new to the site.

For one, my PFTs are down 3% from 39% to 36%. They put me in the box for PFTs this year for the annual check-up, which measures 2 additional things: Click to continue reading this article…

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.

TGHToday I went in for an unscheduled clinic visit because I’ve been having seriously labored breathing.

There have been precious few times that I’ve actually been scared for my mortality because of my breathing (thinking about mortality and having physical feelings are so different). This week was one of them, as I’d climb into bed with my CPAP on, lay down on my side, and actually struggle for breath for a couple of very long minutes. I imagined that I looked like a fish out of water, gasping. My lungs hurt, or at least my ribs did, but it felt like my lungs.

I’ve also had episodes of a stabbing pain in my lower right ribcage, similar to a running stitch in the side about every other time I do my Vest. I have just had a general feeling that my lungs aren’t supple enough to expand or contract any more and that I’m wearing a very tight belt around my chest most of the time. Oh, yeah, and the whole blacking out episode – it’s all making me feel pretty nervous about where my health is at this point.

So, after doing PFTs, Bill said that my volume was up 10mL from last time, so even though I’d gained quite a bit of weight since my last visit, my FEV1 was up 1% to 35% now. What the heck?! I’m not saying that I’m not happy to have better PFTs, but I feel like they are going to think I’m crying wolf soon. I feel terrible, yet I’m still healthy.

Click to continue reading this article…

20_47-BMIAs quite a few of you on Twitter and Facebook are aware, I had another intestinal scare on Thursday. You see, Beautiful wrote about enzymes on Wednesday and every time she or I write about anything to do with blockages, something happens. Without fail. It’s really quite creepy and must stop this time. I’ll get to my lungs and weight soon, but first, it’s story time.

Thursday morning

I woke up feeling out of sorts and shrugged her off and indicated that I wasn’t feeling well when she came to wake me up on Thursday. I got up around 8:30 and started my treatments, but was feeling sore and crampy, only it wasn’t in the usual blockage area indicated from my long history of blockages. Like a seasoned veteran, I weighed the pros and cons of having an omelet for breakfast and just went for it with plenty of enzymes.

I got upstairs to start work around 10:00 and was more or less completely unable to concentrate. The cramps were coming in waves and in harder and harder force, but I can tell the difference between a resistance cramp and an uncomfortable cramp. These were the latter, no nasty, tight ball of crap anywhere to be found by exploratory pushing of my squishies. Sore, yes, but I didn’t have the tell-tale knot of disaster. Beautiful went back downstairs seeing my clear distress and got me a 20oz Gatorade and an extra Dulcolax to hydrate and flush anything that was in there.

Thursday afternoon

I was feeling better by dinnertime and insisted on eating despite Beautiful’s firm reminder that I “felt fine” before our Outback dinner for my birthday 2 years ago. Click to continue reading this article…