Ever get the feeling you're secretly trapped in some sort of weird hidden-camera reality version of one of those bad medical dramas? You know the kind: patient calls doctor to complain about pain in her right arm, but based on her description of the symptoms doctor tells patient it's probably no big deal, after which doctor leaves town for gigantic conference along with all other doctors treating patient's condition. Patient attends routine transplant appt and happens to mention arm symptoms to overly-cautious transplant doctor, who immediately orders an after-hours ultrasound. Patient ends up in large, overcrowded ER for 6 hours awaiting 10 minute treatment for apparent clot, the treatment of which is handled not by transplant doctor but by absent specialty doctor (who happens to be in Minnesota). Patient is discharged with twice a day shots, comes home, and writes obscure blog comparing her story to prime-time television.
Yeah, that's the one.
Okay, so as you might have guessed, I have a clot. It formed around my PICC line sometime over the past few days/weeks/whatever, but was only caught during my transplant appt this past Thursday. To be fair, I didn't have many of the "typical" symptoms of a clot, which I guess is probably b/c the clot isn't actually in my arm so much as at the top my breastbone/front of my shoulder. Also it's non-occlusive, so there's some blood flow anyway, just restricted, so there wasn't a lot of swelling or anything like that. Personally I'm just glad it was caught when it was, and that so far it hasn't gone anywhere other than it's comfy little home in my vein (knock on wood). So far the end result of all this "real world" drama has been: 1) I am now officially BFF with my friendly local vascular surgeon (also the wonderman who removed my port during the recent "Great Port Debacle"), 2) I am now on shots of Lovenox and am getting excellent practice for if and when I ever develop CFRD, and 3) my surgeon wants to wait as long as possible before putting another catheter in, so the challenge is on to avoid IVs for the next 3-4 weeks. So far I'm IV free since Oct. 1, and hopefully I can make it for another month or so before the next round. I'm on cipro, doxycycline, and TOBI right now -- they seem to be holding me pretty well.
Anyway, fingers definitely crossed.
In other news, the transplant appt went well. I did walk a little slower on my 6MW test, as predicted, but honestly it was pretty close to my numbers from back in May. My PFTs were at 35% FEV1, which I was pleased with, and my weight is pretty stable. I'm officially on O2 24/7 (although my doctor still said it was "up to me") and there's not a whole lot of avoiding the fact that I really need to wear it as much as possible, so I've been good about that lately. Of course my portable concentrator picked yesterday to completely crap out for no good reason, forcing me to fill some of my small tanks for my appts today with the vascular surgeon and dentist. Unfortunately when I turned it on it gave me about 6 breaths on pulse flow and with each breath I could actually see the gauge going down, so there was obviously a problem there. I don't think 6 breaths is really gonna cut it for most of my out-of-the-house adventures . . . guess I need to get that figured out tonight, huh?
My tx doctor gave me an appt for Jan 16th and said he really hoped I get called before then. I think we're all in agreement that this needs to happen, especially since my O2 levels seem to be dropping and my HR seems to be rising. Of course I'm still focusing on getting as strong as possible before I get THE Call, but I'll admit it's been harder than usual with all this drama going on.
As for me, I'm done starring in my own personal melodrama, so consider this medical circus officially canceled until further notice. In the meantime I'm going to continue to work out (within the parameters of proper clot-protocol), eat like a madwoman, and work to help balance my energy through gyrotonics, meditation, and, of course, deep breathing.
That's a wrap.
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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