Saturday, September 5, 2009

All About Me

So things are moving right along towards transplant over here in Columbia-land. My score has increased quite a bit lately because of increased O2 needs, lower PFTs, poor weight gain, and a decrease in my 6 minute walk score. They actually think they may have lungs for me here in the next couple of months -- some people were even talking as if I might get transplanted during this hospital stay. Yowza. I'm definitely on board, and I have a huge amount of faith all of the sudden that this is right, things are falling into place to give me a second chance at life for which I will be forever grateful, and that God and the Universe and Columbia Presbyterian will bring me these lungs at the exact right moment for me. I'm definitely ready to breathe and be back to my old, energetic, happy, excited, optimistic, hyper, "normal" (haha) self. I'm just so grateful to even have the chance at that sort of opportunity.

In the meantime though, I'd like to go home. I mean, not to sound snippy or anything, but this whole hospital and failed surgery thing is getting old. Luckily my sats and energy levels are up, and my fever is down, so my doctor is on board with letting me go as soon as they place the PICC line. Unfortunately (there is always an "unfortunately" in the hospital -- have you noticed that?), the PICC and IR teams are out until Tuesday, so that's the earliest I'm gonna get it placed it looks like. Long weekends are so much fun for the outside world, but in the hospital it tends to just mean 3 days of not seeing your doctor and not being able to move forward, which is frustrating. My poor arm has blown through 8 peripheral IVs in three days and is swollen up like a basketball. Hopefully tonight they'll at least be able to get permission to use my left arm, which so far has just been recovering from surgery and resting. I think it's about time it started pulling its weight around here, although it points out that for the past 9 years it's handled all the IV work. What a complainer!

Not much other news. My blood infection is clearing up and I've had a couple of negative cultures. They're still worried that it will come back as soon as they stop the dapomyacin, but if that's the case then I can either: 1) have vascular surgery in my shoulder under "twilight" sedation to remove the rest of the catheter, or 2) go on oral abx to control the blood infection until I get the transplant, at which point the catheter will be removed anyway. I think we're probably looking at option 2, but I'm pretty fine with either at this point. It kind of creeps me out to have that catheter still in me without the port, but whatever. I guess it's not as though I have to see it, right? And it just adds to my awesome "sickgirl" powers, I'm sure.

Speaking of power, I'm really really trying to keep my strength up and regain what I lost. When this blood infection hit, it made me more or less catatonic for a couple of days, and when you're already on prednisone that will wipe out muscle mass pretty quick. I felt like I was dreaming when my doctor suggested that I spend "a little time every day" sitting up in a chair to keep up my strength. Sitting?! I asked if I could walk the hall and she seemed a little concerned but of course said yes, and even offered me a walker! Well, I'm proud to report that after several days of walking laps up and down the ward, today I used my pass and walked OUTSIDE, down the block, around the corner, and down through another building to get to the hospital courtyard. Granted, once there I promptly fell asleep and proceeded to nap sitting up for the next half hour or so, but then I got up and walked back, with a short detour to the vending machines. No, it wasn't the workout of my dreams, but it was something, and I got fresh air, and to be honest it was all I had in me for now. I've also been spending time sitting int he lounge, and I plan to walk some more laps this afternoon. It's not great, but it should hold me until I can get back to my treadmill on Tuesday!

The one great thing about the hospital on weekends is fewer people come into your room and but you for random reasons. I've had my CPT for the day, done most of my IVs, and seen allt eh residents covering for my doctors, so for the first time since I got here I think I can actually shut my door, get out my book, and be as antisocial as I please.

Which is exactly what I plan to do.


  1. I am so sorry you are having to deal with stupid IV's. I can remember all to well what that was like when an IV would infiltrate into your hand/arm/wrist/where ever they could stick one! I hope you get your PICC placed soon so you can go home to sammy...I am sure he misses his mom. :-)

  2. I've been walking the halls of my unit as well, since I'm on steroids too and can't seem to gain weight with all the eating I seem to be doing. Boo on steroids, yay for walking!

  3. Aw man I HATE iv's BLEH. I hope you can get a PICC soon (though Im not fond of those either)!

    Well get feel better soon, you need to be in great shape for a transplant (oxymoron huh?)

    O have you tried or thought about getting a mickey button? I freaking LOOOOOOVE mine and its really helped with weight gain.

  4. Piper! I would really love to chat with you. I am beginning the Transplant listing process now and would love to have an on-the-phone or email chat with you if you are upf or it. I am at home all weekend doing drugs (haha). I know a lot about transplant because my sister had one five and a half years ago. But I have a lot of questions I want to ask you!!

    Would you be willing to chat with me?

    Email me at on

  5. Oh Piper, I didn't check in to your blog for a few days and look at the mess your veins are making of things. Seriously they should just let go of the old port! Silly veins. You'd think that puppy had been in there chewing on your port line or something. :) LOL.

    Anyways, feel better, rest up and be very ready for those new lungs!!! Here's hoping for a speedy delivery... if not a PICC line for Piper!

  6. Your poor arms!! They have had quite a lot of poking to put up with. :(

    Here's hoping for a speedy rest of the holiday weekend.

  7. PS, I know I already commented but I had to log in again to say i plan to shamelessly use this blog post as my reason that the nurse can't draw the tobra levels out of my periph veins (ruining them), and have to use my port. I hope that's okay with you. Some good must come from this hassle you're in.

    Still thinkin of you and your lovely lungs. Old and hopefully new!

    Love, CG as BP

  8. Nice that you escaped for a little bit and had some fresh air. Hopefully by the time this is posted you'll be hoofing it on your own treadmill!

  9. Hugs Piper!

    I'm sorry you've been through so much crud lately.

  10. Hey Piper. Thanks for all the great posts and advice you gave me on Seems like we're on the same path somewhat and it's great to know you're not alone.

    I just started my first blog Seems like a great way to keep sane. Hang in'll have fresh pretty pink lungs in no time :)