From the Blogposts » inbox

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? I’m the only one that has reported it to the staff as feeling like morphine as they inject it – feeling a bit woozy around my brain as it’s slowly pushed in. It clears pretty soon after, but the feeling is nearly identical, though definitely less than “the good stuff.” The 2011 flu shot cocktail was influenza A, B, and H1N1 this year. Man, I knew I was in for a long weekend when he said that. The Boniva shot gives me flu-like symptoms and the flu shot always knocks me down for a few days, so this was going to be bad.

And it was. I took 1,000mg of Tylenol every 4 hours until bedtime. I tossed and turned with getting hot, having bad dreams, and eventually woke up and tried to crawl over Beautiful to turn on the fan over our bed. Last weekend she turned it off when she said I was shaking the bed shivering, so I’m sure it was the same thing again. I “slept” until 9:30, clambered down the stairs, and went immediately for the Tylenol. I feel like a bone-less pile of radioactive mush, but who’s complaining?

By the way, Dr. Floreth rocks. He reminds me precisely of someone I’ve either met or seen on the big screen, but I still haven’t figured out who. His exam tableside manners are perfect, but I’m glad I was pretty undeniably healthy, though I was yearning for 20 years of experience to offer more theories about why I feel gunky, my cough is increased, as has my gunk production. Those are pretty empirical, also. Anyway, we were done and amazed about my PFTs.

I had an 11:15 appointment with my ENT, but here it was about 8:30 and we were done, so we headed across the street to see if we could get in early. Yeah, about 10 minutes later, we were back in the holding room and then back in the exam room before I could check in on Foursquare.

Dr. Tabor took a look up one side and then the other and declared that he’s never seen my tissue looking so healthy and my sinuses so clear. He barely had any gunk to get out at all, so he told me to do exactly what I was doing. Then he asked me how often I was doing my salines rinses. “Never,” I replied. He looked surprised, so I say, “Shove it,” to my NeilMed bottle. I was actually told, unknowingly, by my ENT to not do sinus rinses! Of course, I am one of very, very few people using the Pari Sinus, but I think this makes Dr. Tabor want to put me in a study even more. I’m only doing a study if I can keep doing what I’m doing, because I’ve learned my lesson about stopping what is working (see 27% PFTs above).

So, in the order of 90 minutes, I made my specialists quite happy at my state of the body.

Comments

  1. rburkhalter30 says:

    18 months and 18 days since IV’s. Rockstar!!! Two thumbs up on the awesome clinic report/ENT. The clinical trial J is getting ready to start will have him on either TOBI or inhaled Levaquin. The other study would have been a placebo or TOBI. We did not want to go into cough/cold/flu season with the chance he would be on a placebo.

    • @rburkhalter30 We briefly discussed with Sue about the end of the trial for TOBI/Fozi (sp?) that I was on in 2009 that sent my numbers spiraling. She said everyone who got the drugs did really well and she can’t wait to put me on that to see if it’s as good as Cayston.

  2. kristinerpetersen says:

    Yay! I’m so happy that your lungs are so healthy right now. When the doctors are happy, I’m happy.

    🙂

  3. globalman2001 says:

    Jesse,
    You asked in your post above about Boniva. I have been on it for about 2 years or so and it usuallly gives me a down feeling for a few days similar to a low grade fever and tiredness. I skipped my last cycle and need to get back on it. Flu shot next week. If you were recovering from a cold and got hit with both Boniva and a flu shot then that alone can make you sick. Lot’s of antibodies and chems in the bod. I am so happy your results were up. I know that it always gives me a buzz and also a slap when they are down. Your posts are very helpful and informative. I am hopeful that some of the new aerosol antibiotics and gene thearapy can be out to us soon. I can feel myself getting closer to the brink in needing something new to keep me in good shape. I bet a lot of us have that feeling!
    God Bless,
    Mark

    • @globalman2001 I’m ready for something new and have the same sentiment that it just feels like we need that “new breakthrough” every few years to stay ahead of our age and these bugs.

      Last night we were pretty sure that I feel this way more because of the Boniva than the flu shot because last year, I was able to stay ahead of the fever with Tylenol and didn’t miss a beat, though I did feel run-down. Boniva just might not be worth it, so I’ll ask for a DEXA scan again before my annual clinic in December and see if it’s doing anything.