Changing the standard of thinking.

Tight, Tight, Tight, But Not Sick

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.

[Read more…]

Surgery Day Has Been Canceled

Jesse chowingToday was my last-ditch appointment with my ENT before my scheduled pre-op on Tuesday. To say things went great would be the understatement of 2011. I’d like to celebrate with another one of those Pink’s hot dogs.

He started off by asking me how my symptoms have been and I had to admit that, though I have a headache nearly every day still, they are not debilitating like they were before Christmas. It’s definitely controllable with my Ultram and I’m very able to function with that, even more so than I was with Vicodin, as that at least made me a bit sleepy and has a distinctly more narcotic effect. He reminded me that the surgery he had scheduled was going to have a “prolonged recovery” compared to the one in January, too.

So, up my nose he went (after numbing, of course) to take a closer look at how things had been since I got the PARI Sinus (note I didn’t say SinusStar) and vancomycin to see how that took care of my infection. Last time, he immediately mentioned a polyp. This time, he went in both sides twice with no mention, so I asked, “how’s the polyp look?” “I don’t see one,” he replied. He checked his dictation notes from my last visit and saw the mention of a polyp, but let me know it was gone!

He kept saying how great things looked, too. I had quite a bit of crusting, and the smell burst forth as he dislodged one. Both sides were pretty crusty, even by my standards, but he insisted that my tissue was looking much healthier and he wasn’t at all enthusiastic about operating on me in this condition.

We decided then and there to cancel surgery and keep me on a 3-week on, 3-week off schedule of vancomycin and go back in a month to see if things have improved even more.

In an effort to shame Tampa General Hospital (TGH), they have instituted a campus-wide “no free valet parking” for patients. What was once a pleasure to be treated with such respect as a patient who was often there 2, 3, 4 times per month, we now have the privilege of being charged $5 to use valet or $3 to park in the garage and walk to the building through the hot, muggy Florida air. Thanks a lot, suits. You suck. Needless to say, the valet did not get a tip from me, as they usually do.

A Photo Tour of California

My head is a nice salmon pink now, after an afternoon in the sun on Wednesday and Friday. Strangely, the CA sunburns don’t hurt, I guess, because it only hurts when I take a hot hotel shower. We all have a nice, healthy glow now and are relaxing today after a whirlwind week and day getting back to La Jolla yesterday.

In keeping with relaxing today, I’m going to leave the writing to this long and continue with my favorite images of our trip so far. Enjoy!

Hollywood, Bugatti Veyron, and Pink’s

Today we went everywhere a native of L.A. would never do in one day. It was crazy of us, but with our schedule, we went for it anyway and since I wasn’t driving, well, that was just a bonus that let me sleep through the long drive back.

We left just after 10am for downtown, getting on I-5 and we were amazed at the traffic. I am used to really bad conditions on I-275/I-4 in Tampa and have driven through both D.C. and Atlanta at rush hour. Those places are nothing compared to this, although, I’d have to give the drivers high marks from what I could see from where I was sitting. Except the motorcycle riders. Rip off all your “watch out for motorcycles” stickers and just give them what they deserve for what I saw today.

We got off the interstate to see the Staples Center and pass by the Nokia Theatre since the American Idol finale was just there last night. They were still busily cleaning up. Then we headed in the general direction of Rodeo Drive to see the shops and got to see a bumblebee Bugatti Veyron!

Just after we left the hotel, Beautiful’s sister started talking about Pink’s Hot Dogs, so I checked and saw that it was on the way to the Griffith Observatory where we wanted to head to see the city and sign from up there, so we got to experience Pink’s in all its glory. It was awesome! I got the 9″ “Mulholland Drive” – a stretch dog with bacon, mushrooms, sauteed sweet onions, and nacho cheese with jalapenos for kickers. I ate it in about 12 bites because the dog fell through the bun, disintegrating it into a mess – more than it already was. It was – hands down – the best hot dog I’ve ever had, and at $6.10 in CA, I consider it quite a steal.

After my belly was quite happy, we headed over to the observatory for a spectacular view of L.A. and a cool vantage point for photos with the Hollywood sign behind us. So, I really don’t have any idea how far we traveled today, but it was a good 4 hours of driving, so it’s safely something we won’t be doing again, but I wouldn’t mind eating at Pink’s until I’ve had every menu item I want to try.

Bucket list item: stand on the Hollywood sign – close enough!

Tight, Tight, Tight, But Not Sick

Today 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 … [Read more]

Surgery Day Has Been Canceled

Today was my last-ditch appointment with my ENT before my scheduled pre-op on Tuesday. To say things went great would be the understatement of 2011. I'd like to celebrate with another one of those Pink's hot dogs. He started off by asking me how … [Read more]

A Photo Tour of California

My head is a nice salmon pink now, after an afternoon in the sun on Wednesday and Friday. Strangely, the CA sunburns don't hurt, I guess, because it only hurts when I take a hot hotel shower. We all have a nice, healthy glow now and are relaxing … [Read more]

Hollywood, Bugatti Veyron, and Pink’s

Today we went everywhere a native of L.A. would never do in one day. It was crazy of us, but with our schedule, we went for it anyway and since I wasn't driving, well, that was just a bonus that let me sleep through the long drive back. We left … [Read more]

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