Sunday, October 13, 2013

Just Breathe

A few years ago I had a minor, unsedated procedure to remove an infected port-a-cath. At the time I remember lying on an elevated platform in my vascular surgeon's office with a bunch of sterile dressing draped over my head and neck area, with a bunch of men hunched over my pretty much naked chest. And yes, it was every bit as much fun as that sounds. But I digress.

At some point during the process, my surgeon needed to numb up the area enough to cut my skin and vein open and pull the evil cath-of-death out. This involved sticking me repeatedly with lidocaine, in my neck and chest, while I lay there sick, semi-undressed, basically blind, and breathing through sterile sheeting. And because he was a good surgeon and recognized that I might not be entirely comfortable with the situation as it was, he instructed me carefully that the numbing step was about to happen, that it would hurt, and that he wanted me to try and breathe through the discomfort -- physical and mental -- because it would only be temporary and the result was important. Breathe through it, he said. Interesting choice of words, doc.

Breathe through it. 

Later on, when my lungs failed, a pulmonary rehab trainer told me that during times or activities of high stress, most people tend to breathe erratically. Or, to put it another way, to stop breathing altogether. When lifting heavy objects, for example, the natural tendency is often to hold our breath until the burden is removed. When faced with a scary situation we breathe in rapidly -- and then we hold it until we believe the danger has passed. Heck, according to my trainer many of us go so far as to exhale completely before attempting even unremarkable tasks like climbing a staircase, which means we do so without the full use of our breath. And she must be right, because to this day I can remember hearing my mom's Jazzercize instructor crying out "don't forget to BREATHE" to an entire class full of women with tightly wound perms and colored leotards. In fact, to hear how often we as humans subconsciously choose to stop or just stunt our breathing, one might get the ridiculous idea that oxygen is an optional life source.

Guys, trust me on this one: it's not.

So where does that leave me now? Well, recently my lung function has taken a bit of a nosedive, leaving me with a whopping 22% FEV1 (the amount of air one can exhale in one second). And this is, sadly, what we might call NOT a great number. All of which means that after much consideration, time, and effort on the part of my amazing team(s) of doctors and specialists, I have decided to actively pursue a second lung transplant. At this point in the game with chronic rejection, it's become clear to all of us that retransplant is the next step if I am going to try for that long and heathy life I truly believe is possible. My days with Donor Bob, amazing as they have been, are coming to an end one way or another.

And I will breathe through it.

I will breathe through the discomfort and remind myself that this is only temporary. All of it. I will breathe into the hard stuff, remember to breathe when it gets scary, remember that there is no box so heavy that it can't be moved. I will breathe, and I will not forget. And I will take that 22% and use it for all it's worth -- I promise you that, beautiful people -- because that choice is and will always be mine alone. Not CF's, not chronic rejection, not any of the other little monsters hanging out in the shadows. I will breathe, because that is MY breath.

And there will be discomfort.

I hate this disease more than anything for what it does to my family. I hate having to go through this again because I feel like the rest of my body is so beholden to this one very temperamental part. And I hate watching as life gets smaller and smaller traveling down the medical rabbit hole -- again. I want my loved ones and myself to have more time to enjoy the things that make up our lives when we're not overwhelmed with this "sick stuff", want to go back to the days when my health was A factor in my day-to-day plans and not THE factor. I want all of you to be able to read this blog and smile and know I'm okay (I AM okay, by the way). But then again, I know the reality is that this discomfort, is only temporary -- and the result is important.

So I'm asking my loved ones, my family, and all of you to do me one huge favor:

Please breathe through it with me.

And together, we can blow them all away. 


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  2. Piper, dearest, I am breathing through it with you and all the Beattys. Today I wore the lung t-shirt you had made at the time of the first transplant!! XOXOX, Your godmother

  3. Piper, I'm so sorry that BOS got to Bob. You have been amazing through all your challenges and I admire your determination to breathe through this next one. I believe Duke will get you past this (as I believe they will for me as well.) You will be in expert hands and in the hands of God as well. Best wishes.

  4. We're with you Piper. You've got this!!!

  5. Piper, please forgive my confusion and apparently I misunderstood the post to be about Travis. I don't know you but please know you are in my thoughts and prayers. God bless you.

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