Thursday, May 21, 2015

What I Know Now

Here we go again.

In so many ways it feels as though the last year or so has been a total whirlwind. We've now gone through a full set of seasons since I officially left Durham, North Carolina and brought my new pal Donor Nick back home with me to Colorful Colorado. And while I wouldn't exactly say it's been easy ("easy" is not a word I tend to associate with either cystic fibrosis or lung transplant), I can say that it has most definitely, without a doubt, been worth it.

As a little bit of background, let me just say that this second double-lung transplant was, no question, the single most difficult thing I have ever experienced in my 33 years of living with a chronic and deadly illness. Seriously, guys, this one not only took the cake in that contest, it took the whole darn dessert tray. To say that the process of retransplantation left me feeling somewhat stunned, shaken, and well, just kind of "un-Piper-like" would be a little bit of an understatement.

Now, before I go any further here, I really want to emphasize that this is definitely NOT the case for all second lung-transplant recipients out there. Doctors do tend to warn retransplants, as we're called, that recovery is often tougher because the surgery itself is more complicated. For one thing, by the time you get called in for your second set of donor lungs, you've already had at least one surgery in the exact same area, meaning the doctors are much more likely to encounter scar tissue in there. For another, years of immunosuppression and other pretty hardcore therapies leave the body somewhat vulnerable, and recovery is always easier when you're in the best shape possible going into the surgery. But even with both those factors (and a whole lot of other complicated medical issues) in play, some people breeze right through their second transplants. I even have several friends who found the second surgery to be easier than the first in terms of recovery time and post-surgical complications. And to those lucky, wonderful people, I can only offer this: congratulations, guys, because as far as I'm concerned, you all are clearly superhuman.

For me, the second transplant was a rough ride almost from the get go. I didn't actually feel as bad in the months leading up to it as I had with my CF lungs before my first transplant -- my numbers were dropping, but my spirits were remarkably high (note to self: falling in love is pretty good medicine), I had a lot of faith in the treatment options open to me, and I was still able to function more or less as I had been doing before the rejection hit. Even after we tried a drug called Campath to stop the rejection and it failed to do so, I still felt fairly confident. As it became more and more clear that retransplant was my only viable option, I readied myself for that possibility as best I could by continuing to stay active (with oxygen), using supplements to hopefully increase my weight, and talking with my doctor about which transplant centers might be right for me. I knew I wanted to relist at my original center, but by then I was also halfway across the country from them, plus I knew I needed to be able to get lungs FAST in case my PFTs continued to slide rapidly. So I chose a new center, flew out there, got evaluated, was accepted to the program, took all the necessary steps to double list with my original center, and was well on my way. Which is right about when I learned I had cancer.

Yeah, you read that right.

Thankfully what I faced was "only" what is known as Melanoma in situ (aka, Melanoma stage zero). Basically, this meant that after two facial surgeries to remove all the cancer cells and a clear PET scan, I could most likely move forward with lung transplant. Also at around this time they discovered that I had multiple pulmonary emboli due to a failure of my anticoagulant medication. By the time those two issues were addressed, I had come in for a routine clinic visit and discovered that my lung function was sitting below 20%. It was definitely time to move.

To be honest, so much of what happened after that initial flight to Durham and introduction to the transplant program there is a hazy blur in my mind. Even now I have huge gaps in my memory from that period (we later found out I was retaining dangerous amounts of CO2, which is probably enough to make anything a little hazy), although I do recall some of the basics. I know I had a dry run in which I flew back to my original center in hopes of receiving lungs, but it didn't work out and I got sent back down to North Carolina and spent nearly 48 hours completely asleep. I know my oxygen levels started dropping so low at night that my husband and parents decided to forgo sleep in favor of keeping an eye on me so they could wake me up if anything scary happened. I know I stopped eating entirely and for the first time in my life had to be fed exclusively via a g-tube that was inserted in my stomach, and even then I was below the acceptable weight range for listing. I know that walking around a flat track in pulmonary rehab with oxygen had become more strenuous for me than a hike up a 14,000ft mountain would have been in my healthier days. I know that a friend came to visit for Thanksgiving and my birthday and left somewhat convinced he might never see me again. I know I blew a PFT so low that I didn't blow again until I was transplanted, over two weeks later. And I know that at some point in that whole mess I ended up in the hospital, on a bipap machine, having multiple anxiety attacks every day and literally begging my team to find me lungs.

And, of course, I know that they did.

I knew the second the phone rang at 8am on Christmas morning that this was it. There was no question in my mind as I listened to Patrick talk to the nurse from behind my bipap mask. I was calm, I was ready, and I knew this was probably my very last chance. So I instructed my mom to bring the bipap with us, switched over to my oxygen machine for the car ride, sat down in my wheelchair to say goodbye to Sampson Bear, and away we went with the lights from the tree winking their goodbyes. I wouldn't see that apartment again for 40 days and 40 nights, exactly, and it was without a doubt a passover for my entire family. That was the day we all said goodbye and thank you to my beloved Donor Bob and welcomed Donor Nick into our family. It was also the day I started what has -- and will likely continue to be -- the long process of "recovery" from the life-saving, life-changing, and 100% life-affirming journey of lung transplantation.

But there are also other things that I know and remember out of our time down south. I know the doctors, nurses, and staff were incredibly kind to us and gave me the best possible medical care. I know that despite having a relatively complicated case, my team did everything they could to get me lungs. I know that I met some absolutely amazing people at the rehab center while walking that dreaded track -- people who could make me smile even when my lungs were screaming and who were remarkable in their own strength and resilience throughout the process. I know my family dropped everything to be with me, and believe me when I say that I know how lucky that makes me. I know someone chose to donate life, to make possible new beginnings out of their own worst moment, and for that I know I will be forever grateful. I know that however long or rocky that initial road out of the hospital was for me, it was doable, because I know lung disease is not for the weak of spirit. I know I laughed sometimes, I know I smiled, I know I cried tears of raw and real happiness and gratitude. I know God listened. I know I read each and every card I received. I know I'm still breathing. And I know that now, for perhaps the first time in over a year, I can type these words and mean them:

I know that I am still here -- and that I will continue to heal, month by month and year by year.

For a lifetime.


  1. Piper, this is gorgeous. Very heartfelt and touching words. Now I need a tissue!!!

  2. Love you! You write brilliantly!!!

  3. you are amazing! - Sarah (Lilismom)

  4. Incredibly moving Piper. Would love to hear all about the new hubby too! X

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