I'm a too little tired to give the most detailed account of today, partly due to the fact that my clinic went until 7 pm. I was at St. Mikes from 12:30 - 7 pm, so yes, a VERY long clinic!
The details . . .
I kind of got the impression today was going to be a long one when it took me 15 minutes to get an elevator... the first elevator car arrived packed full of people and a stretcher. The paramedic holding onto the railing of the stretcher gave me a sympathetic "sorry" and I tried not to look too disappointed as the doors teasingly closed again. A little peek-a-boo session of sorts. I waited a few more minutes and the second car came, this one only had two occupants, a man in a wheelchair and I assume his wife pushing him. "Get out the way please" the pushy woman announced, and I stepped back to let them pass, only to have the elevator doors shut on my face and swiftly leave. Apparently being the broken girl with oxygen still doesn't qualify for someone to hold the door for you. "Motherfucker" I said out loud as I pressed the button again, with a little more force than necessary. The only satisfaction I got from this moment is when I heard the couple looking for their exit and I realized they were going the wrong way and got off on the wrong floor... too bad they pissed off their would-be tour guide. Anywho, after 15 minutes and running into an RT, who kindly gave me his extra poppy (random exchange, but I noted that I can't seem to find them anywhere), I finally made it to clinic.
Let's get clinical (clinical). . .
My PFTS are still stable at .71 (24%) and this past week I've been able to start clearing my phlegm (woo hoo! also.. attractive!) AND reduce my oxygen from 2 L to a barely-there prescription of .5 L while walking. I've been feeling a lot better chest wise, despite the crackly all over feeling, which is a hell of a lot better than the clogged-bricks-for-lungs feeling.
Of course, when the chest is 'well', it means my GI symptoms decide to step up to the plate... history has a tendency to repeat itself, doesn't it? I've been having some wicked heartburn this past week, which I suspect has a lot to do with sitting around more due to IVs. This has caused me to forgo the Halloween sweets and instead reduced my eating habits to munching on Tums like candy. In the mix of things, I also lost my appetite completely. And adding to THAT problem, my G-tube site has been red and irritated which has made me stop my night feeds. As a result of all this sabotage via my temperamental CF gut, I lost the 3 lbs I proudly put on last week. Apparently this actually showed up in my blood work as loss of muscle mass -- which isn't great, especially before transplant, when you need all the muscle you can get.
So I've now been put on two different types on prescription antacids to help with this: Losec (which I'm always on, 80 mg a day) AND prescription strength Zantac (as needed-- e.g. when acid shoots up into my throat). Ouchie! I've also been given a cream for my G-tube irritation, so I'm hoping to be able to get back to night feeds and gaining back my dear weight again. I'm now just a child of 83 lbs.
On the 'weird' side of things, even though my symptoms seem to be better (less short of breath, better exercise tolerance, clearing phlegm, no night sweats) my inflammation (measured as CRP) seems to be going up, and my WBC (infection fighting cells) is 20, which is higher than they were when I first started IVs 5 weeks ago. It's also a lot higher than 'normal' which is below 11. But after weighing this all out, we still decided to stop IVs to give me a little break. Symptomatically, I'm feeling better, so either the WBC is going to catch up with me or not... I do need to concentrate on gaining weight again and getting much needed sleep (which is hard on home IVs). I go back in a week to reassess, and hopefully my vacation lasts for a little while!
P.S.
I lied, I gave a detailed account. Still can't do the half-assed effort thing, darn.
<3 you and your blogs
M
hillarious. i love reading your blogs.