Yea for Lungs

That is the sentiment that you'll want to give me when I get The Call that there's a donor. There will be well wishes, prayers, and hopes for all the good things on this new horizon that I don't have today: watching the rest of you run your half marathons (I mean, I'm excited to be *able* to run, I just don't plan on doing much of it); sprinting from ride to ride at Disneyland with the kids; walking carefree through Nordstrom; taking up tennis, etc.  And these are all wonderful thoughts to share with me.  They reflect the love and hope of everyone out there that I will be rid of this horrible disease, Pulmonary Hypertension, and can start planning for a bright future.

But I am a little consumed of late with that time between The Call and the eventual hike with my family to Snoqualmie Falls.  What exactly happens during that period is unknown but we do know I need to get much, much worse before I get better. 

And it's not this current gradual worsening of my PH that I'm worried about.  It's the clock that starts ticking when the anesthesiologist puts the mask on me and the surgeon readies his knife to make the incision that will enter at one armpit and go all the way under my breasts until it reaches the other armpit. My sternum will be broken and I'll be torn apart like a car hood.  Two tubes will be inserted near my heart then my heart will be stopped with cold potassium as a heart-lung bypass machine takes over the job of filtering and moving my blood around my body.  My heart will not beat again for many hours.

My sickened lungs will be removed, new pink lungs put in and while the surgeon reattaches as much as they need to, it's impossible to reattach all the tiny vessels that bound themselves to my old lungs. 

They will restart my heart.  We hope that, despite the trauma of this surgery and the accumulation of the last six years of heart strain/failure, when I am taken off the bypass machine, my heart responds with resolve and not resignation.  Taking that first breath is huge but that's only one piece of this broken puzzle -- every part of my body will have gone through a trauma and other organs are precarious as my body tries to right itself.

Mercifully, I will be sedated as long as I need to be while my organs get their shit in order and the risk of immediate rejection is past. That is not the case for you guys and it's going to be a harrowing road as all you can do is wait and try to understand the medical jargon flying around.  Even if I have a perfect transplant with no complications (which is seemingly unheard of), it's reasonable to expect at least 24 hours before my ventilator is removed.  I'll have tubes in my neck, my arms, chest draining tubes, a bladder catheter, epidural catheter.  It will be impossibly difficult for Scot and my mom as they try to keep spirits high, expectations reasonable and put on an optimistic face for others, especially the kids.

When I finally come to, my goal is to get moving as much as I can and manage my pain.  Scot and mom will be on hand to learn the new life routine at home -- I'll be sent home on as many as 20 different medications a day, all with different instructions (some are three times a day, some every 12 hours, some with food, some on an empty stomach).  Every morning for the rest of my life, I'll wake up and measure my weight, pulse, blood pressure, temperature and breathing.  I can expect to have some rejection and/or infection episodes, especially in the first six months after transplant. 

Much of this "woe is me" stems from my PH progression of late but it's acutely due to my friend Katie, who had a lung transplant last Friday.  She's a remarkable inspiration and we have shared a dry sense of humor and frequent frustration about having PH for the past four+ years and it's incredibly difficult to be on the sidelines as she's fighting for her life.  So, yes, a huge "yea for lungs!" and the belief that Katie will be the best lung transplant patient ever.  But, oh, that there were a fast forward button for times like these.