From the Blogposts » inbox

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.

Annual CF Clinic Visit 2010

TGHToday was my annual clinic visit. Not the dreaded annual, but it was not my favorite day, until just about half an hour ago when I found joy despite the bad or discouraging things of the day. I have to preface this with acknowledgment that Sue (my coordinator) told me that I wasn’t allowed to blog about today while I was still sad or upset about the visit. Now that I’ve found my joy, I’ll start writing – you know I’ll still be transparent with you about all of my ups and downs, though. Just know that I still will go to bed a very happy man despite CF and despite some things that made me feel less of myself.

What the annual involves

At the Tampa CF Center at TGH, the annual visit includes a full blood workup, urinalysis, sputum, PFT, doctor consult, dietician, social worker, and chest x-rays. They drew 9 vials of blood in the time it takes me to donate a pint – a hilarious 2 minutes to me. Next is the standard PFT that I showed from my last clinic visit. Then I went to radiology in the main hospital for my x-rays and hoofed it back as soon as I could (about 20 minutes later) for what is usually the doctor. He was running late because they were a doctor down and I got the impression that there was a recent transplant that he was attending to. I got to see the social worker before the doctor, but then it was him (head of pulmonolgy), the dietician, a surprise test, and then a second consult, and off to my next thing. I got there a tad before 7am and was out at 11am, but I’m usually out by 8:30 when both doctors are there and it’s not an annual.

Not a happy camper

My day pretty much started out bad with my PFT results. [Read more…]

Hattie Dunstan: New Lungs, New Color

Hattie Dunstan

Hattie Dunstan

On Monday, July 5, 2010, Hattie Dunstan got the call at 1am to come to Toronto General Hospital for new lungs. By 4pm, the miracle of transplantation was complete and her cystic fibrosis-riddled lungs were gone. Her new life, while still heavily sedated until the next morning, had begun.

I love reading these stories, because it was one more person on my blogroll who went from the purple “Waiting for new lungs” status to the green “Transplant recipient” status. I’m looking forward to not being able to find anyone on the list blogging away their days waiting for new lungs. I’d rather that my list be all green “new lung” blogs, white “I’m doing fine” blogs, and pink “I’m sticking by my CFer” blogs. Say “no” to purple!

Two more on the list to go! Hang in there Beth and Dustin. I was just reading Hattie’s post from July 2nd a moment ago, and I got choked up remembering reading it on the 4th, with none of us knowing she was getting new lungs the very next day! Here is what she wrote:

The word breathless has taken on a whole new meaning. I thought I knew what being out of breath was. I thought I knew what not breathing was like…no…not until this week did I know what it is like to struggle…and that’s saying something!

I cannot even get over how much my breath has now been taken from me. Doing anything leaves me gasping, haunted, winded, exploded, breathless. It is absolutely insane, terrifying and unbelievable that something as breathing can be soooo hard, even harder then before!

Amazing! Go, Hattie, go!