Monday, January 27, 2014


Hi there, lovely readers.

I've had a lot of you ask via the blog or FB or messages how I'm feeling lately, and I guess the best answer I can give you right now is that I'm feeling a little, well…

I'm feeling a little leaky.

As of right now, I'm still in the hospital with two chest tubes: one "regular" tube that has been in since my transplant and one "pigtail" tube that was placed last week as a way to combat something called a "pleural effusion" (layman's translation: fluid in chest cavity around the lungs). Both tubes have been working on draining fluid, and the regular tube has also been hooked up to suction (exactly what it sounds like -- just a tube that sucks out air) to remove subcutaneous air from under my skin. That would be air that leaked in through -- you guessed it -- the chest tube. Confused yet? Good, because I am too.

Basically, the story is that I'm leaking some fluid, and I'm leaking some air, and both of these things need to be resolved before I can really think about leaving, which is way more fun than leaking any day. All of these things have also left me feeling a little "leaky" emotionally, meaning I've just been a little drained, a little defeated, a little not-so-Piper-like lately. And that just means that this 30+ day hospital stay, as necessary and wonderful as is it is, is getting a little old. There, I said it. And you know what? I'm not even sorry.

In fact, I even told my docs as much the other day, pointing out that my mental state recently has been a little harder to control in terms of keeping my head in the game and staying positive. Don't get me wrong, I'm not flying off the handle (yet). I'm not depressed (yet) or overly anxious (yet), but I believe in being proactive and I believe there's more to life with illness than pretending this stuff is all sunshine and rainbows all of the time. So I asked my team what we could do to make some progress over here, and they came up with a reasonable, medically appropriate answer.

Right now, we're conducting an experiment. We plugged one of the chest tubs 24 hours ago, and so far the fluid accumulation and air leaks have not gotten worse with that tube out of commission. Should that trend continue for another 24 hours -- a full 48 in total -- then we may just pull that tube and see what happens with only one tube left. It's a good experiment because sometimes the body just needs a little urging to start doing its job and picking up the slack from the leaky fluid and air, and it looks like that might even be true in my case. Believe me, all fingers are crossed and all our thoughts are dry and air-free over here.

So that's the latest and greatest from over here in our tubular, leaky little world. My doctors have also "prescribed" lots of walking and some time outdoors as often as possible, for which the North Carolina weather is a blessed help right now. I'm happy that the team is taking my restlessness seriously while continuing to balance my physical health needs -- it shows concern for me as their patient on both human and clinical levels. All in all, that's probably the best indicator I have that things are looking less leaky around here -- for the tubes and the tears.

And here's to all of it drying up!


  1. Dearest God Daughter Piper, Who wouldn't be teary and restless after 30+ days in the hospital after MAJOR surgery? You express very normal reactions, dearest one. Here's to your drying up like arid state in which you were born! Know that prayers and strong vibes are heading your way from you loving godmother and Hugs, Hugs Hugs from Calvin

  2. I just found your blog and I have to say your story is inspiring. I am 26 and need a heart/liver transplant. It is comforting to hear how other people cope and show such courage. Thanks for sharing your story, your family will be in my prayers.

  3. Hoping things are improving, lovely Piper?


  4. Hoping you are doing well. I wanted to let you know that your blog has been such an inspiration to people that it has been included in the list of the Top 35 CF blogs. You can see the winners here:

  5. I also hope that you are continuing to heal and grow in strength :)

  6. Hi Piper
    I hope all is going well, continuing form my side of the Atlantic to wish you good health and energy :)

  7. Piper how are you? Hope all is well... I'm concerned you haven't posted in a bit. Hopefully your new lungs are going well! :)

  8. this is very nice..hope you have good results

  9. Really hope that you're too busy enjoying life to post! Missing your updates though. Wishing you all the very best x x x

  10. echoing wish that life is to full for blog life :)

  11. I hope you feel better soon. Can't wait to hear more about how you're doing. It's been quite long since the last update. Hope you're doing good!

  12. I just watched the Katie episode you were on, very cool to see someone whose blog I've been following for a few years. Hope you are well, congrats on your engagement!