Friday, October 16, 2009

Transplants and ERs and Clots . . . oh, my!

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.


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  2. I got home maybe 20 minutes ago. Our roof is being replaced. They started today. My wife was out most of the day, but came home with the kids after school. I don't know how they tolerated it (other than the fact that my wife's hearing seems somewhat impaired anyway). In this short amount of time, I am tense and have a headache. Oh wait, that's just me after a day at work and then home with four kids eight and under.

    My point? I think I have one somewhere. My current state is irritable, overwhelmed by an external force and so confused by too much stimuli that I cannot think straight. And, this is just a little roof repair noise. See how whiney some people can get?

    Admittedly, I don't think I followed the details of your blog post well. (I'm too busy praying for sunset to send these workmen home). But, the concepts were over my head and overwhelmed me. (I can only imagine how you must feel.)Despite that, I get the sense that you're attempting to maintain a sense of humor and a positive outlook. And, judging by the fact that you're even writing a blog post at a time like this, I am impressed. (Of course, if you're anything like me, sometimes writing it all out is the only thing you have.)

    I'm sorry you're facing these challenges and enduring this crap (Is that a blog-friendly word on your site? I could have used a lot worse and it would have applied.)

    I wish you the best! Keep posting

  3. =( Im sorry you had another "bump" in this already rocky road, BUT you are so amazing and positive and I admire you tons!!


  4. I know that you will do nothing but push right through this latest bump, but it still stinks that there are bumps at all.

    You're always in my thoughts and prayers.


  5. A clot! That sucks! Been keepin' you in my thoughts and prayers! Before my tx I was doing "restorative yoga" twice a week (for about 2 months). It really helped, I think! My instructor was fantastic and really gave me a lot of individualized attention. It helped a lot! Praying for that call!

  6. You will get it soon I just know it!!!!!!!! Hugs love!!!!!!