Thursday, February 25, 2010

Day in the (Transplant) Life

Disclaimer: With a couple of exceptions for Sampson and the view from my apt window, most of the below were taken at my hospital, under the unflattering light of an exam room, using an iphone. Suffice it to say these are slightly less than "glamor shot" conditions -- consider yourself warned.

So today my mother:

and me:

left this little guy behind:

and headed away from this view:

(all the while dragging this* with us):

until we finally reached this view, and all that comes with it

In other words, I had transplant clinic.

*For those of you wondering, this machine is my Sequal Eclipse 2 portable O2 concentrator. This is one of my all-time favorite pieces of equipment. It's (relatively) lightweight, it's on wheels, it has either pulse or continuous flow, and if it starts to run out all you have to do is plug it into the nearest outlet or switch out the battery. I have portable tanks too, esp. for working out or things that involve a lot of outdoor walking, but this machine is FANTASTIC for overnight trips, airplanes (FAA approved), and marathon appointment days at the hospital.

Not a whole lot to report. I apparently still need new lungs, and they are apparently still working on making that happen, hopefully sooner rather than later. I am starting IVs again today, but only one since I'm on inhaled TOBI already and we're going to hold off on IV tobra for a while. I did another 6MW test and dropped a couple hundred feet to around 1600, but I guess that's still not all that bad, especially considering that I'm in the middle of yet another exacerbation.

Um, yeah, this is my 3rd round of IVs for 2010, in case you're keeping score. And you know I hate useless comparisons, but it looks like 2010 is on track to be every bit as ridiculous IV wise as 2009, if not more so. Clearly I'm an IV junkie at this point and should be in some sort of 12-step program -- just so long as step 1 involves new lungs!

Anyway, IV madness aside, today really wasn't too overwhelming. I'm feeling more and more secure in my transplant team, and they've been very forthcoming and honest about where I stand on the list and what my options are. I know at this point in the game it's all about patience and just trying to live as much as possible until those perfect lungs come along. And I'm really hoping that the IVs I'm starting today will help with that too. Because let's be honest, it's a hell of a lot easier to be patient when you're not choking on your own breath half the time. Or maybe that's just my personal opinion.

Then again, coming home to a (snow-soaked) shorkie makes it a little easier too:

Much love for a wonderful weekend, beautiful people.


  1. In the last picture of your pup, it looks like he is smiling! Happy to see you are still smiling too! Thinking Pink for you!


  2. Love the pics! Beautiful smile as always Piper! Was mom putting up the fist to say "you'd better not snap that iphone picture!" LOL

  3. I love the pictures :) I keep praying (as I'm sure everyone is) for those new lungs to come along. Stay strong and please continue to blog :) I love reading what you have to say!

  4. Love the pics!

    Snow Soaked Shorkie

    Say that 3 times fast ;)

  5. that 02 thingy looks pretty cool. i only had those ugly green tanks.

    cute pics!

  6. Choking on your own breath, for sure! I'm always thinking of you and hoping you get the call even though I've been busy. I like the eclipse too but can no longer get one bc of the liquid helios I use.

  7. Bummer about MORE IVs. I am thinking about you over here all the time. Soon I'll have time to properly keep up with blogs as I am going to stop working!! FINALLY!

  8. Loved the pics! Hope you have a great weekend too, beautiful cousin!

  9. who is friggin adorable? You. and you dog. and your mom!!!

  10. who is friggin adorable? You. and you dog. and your mom!!!

  11. Sorry to hear about the IVs again Piper. :( I really hope you get those new lungs soon! Sampson is a little cutie... I'll bet he had a ball in the snow!

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