Guest Blog: Friends for LIFE

As anyone currently following me or this blog on FB probably knows, April is National Donate Life Month. As a transplant recipient, this is obviously a cause very near and dear to my heart (and my lungs!), and I thought it only appropriate that this blog take a time out to celebrate the miracle that is organ sharing and altruistic donation. 

With that in mind, I'd like to take you back in time to June, 2011, when I wrote this post about my dear friend and fellow CFer/lung transplantee, Allison, and her need for a life-saving kidney transplant. The response, even at the time, was pretty overwhelming. One woman wrote in from Texas asking if she could be tested, another reader indicated that she would be willing to travel from California if needed. More still wrote in expressing prayers, love, support, and their own stories of survival and hope. And in classic Cystic Underground style, the community rallied around Ali in a way that left no doubt that she was loved and supported -- we even had the spouse of another CF/transplantee test to see if he could be a match for her, though they'd never even met. 

Since then, I've received countless emails, comments, and FB messages asking for the ending. So without further ado, and in the spirit of true friendship, community, and thankfulness, I give you this guest blog by one of the strongest survivors I am honored to know. Ms. Allison, take it away:

Living Proof

Two years ago this month, my blood pressure was out of control, I looked swollen and just not right. My lung transplant team had a feeling my kidneys were on their way out after 6+ years of medications to keep rejection at bay, and referred me to a nephrologist. One visit, some scary preliminary bloodwork and a kidney biopsy later, that word was thrown my way again: transplant. This time it seemed more daunting than my lung transplant, because dropping kidney functions were not helping my lung functions stay stable, and also because the option of a living donor meant I could not just sit back and wait on a very long list. It was up to me to find someone willing to just be tested as a match. The months following my initial diagnosis of end stage renal disease were stressful, frustrating and incredibly tense. My siblings were great matches but they both ran into their own health issues and could not proceed with the donation process. I had pretty much (inwardly) given up the prospect of a living kidney donor when a good friend of mine, who had been one of the first to send in her organ donor evaluation forms and had told me with no hesitation that she was “the one,” again stepped up and chose to continue with the process.

Let me assure you, it takes a special person who is not even related to you to go through what she did. Countless trips to doctors, getting bloods drawn, assuring her family and friends who thought she was kind of nuts for even considering donating an organ. All while working full time and raising 2 small children. I told Jessica more than once that she could stop the process at any point if she didn’t want to follow through. It was totally fine with me if she backed out. But she insisted from the get-go that she always felt that she was supposed to do this; she had faith that this was meant to be. We had many long talks about it, and most of the time SHE was helping ME keep the faith, when I should have been reassuring HER that everything was going to work out and be okay. I think it is our friendship, however weird and funny it is, that got us through. Our sick senses of humor were and have been a key in keeping our sanity through a grueling time.

Since our surgery, our lives have continued as before. I say this because the day to day keeps going after such a life changing surgery. She has her children to tend to, a home that she takes care of, her life that she lives. My life goes on as well, with a few more doctor visits than before. We meet up for our Breakfast Club adventures, drink coffee, catch up on our lives and those of horrible reality TV. We go shopping together and make each other laugh until we can’t breathe. Our friendship feels like it did before, but on a more profound level now. She is, literally, a part of me!

Words can never express how grateful I am to Jessica. How can you thank someone enough for giving you the gift of extended life? For giving me more years to spend here on earth with the people that I love? To allow me to see more sunrises and sunsets that I probably wouldn’t have seen if it were not for her? Words can’t explain it. I know that she knows I am forever indebted to her. If she ever needs anything I would be there for her in a second.

With April being Organ Donation Registration Awareness month, I want to encourage everyone to register. It does not mean you have to be a living donor like Jessica. But when the time comes that you may not need those organs anymore, you could save someone’s life- maybe a few people’s lives. 

Believe me, I am living proof. 

To read more about Allison and her amazing journey with CF, new lungs, and "Sheen the Kidney Bean", please visit her blog at New Organs, New Life. 

A Prayer In Celebration

In honor of National Donate Life Month and in recognition of the truly beautiful gift of organ donation, hundreds of donor families, living donors, recipients and their families, and healthcare workers will gather today at the amazing St. Patrick's Cathedral. Today, I offer this prayer in memory of my beloved Donor Bob -- the greatest guy I never got to meet -- and for all those who give of themselves to help save us all.

A Prayer in Celebration of a Life I Never Knew

I wasn't there to hold your hand

The day you slipped away.

I was going through the motions,

I was on my knees to pray.

Two hearts at once were beating,

Two strangers in the night;

Two families filled with grieving,

Two souls putting up a fight.

None of us were certain

What tomorrow's morn would bring

Lives were hanging in the balance

When we heard that telephone ring.

In the grand scheme of Creation,

Saving my life seems so small,

But I promise, lovely donor,

To my family: it means all. 

If I saw you on the street today 

I wouldn't know your face,

But I hope that you'd be proud of me

And look on me with Grace.

Because every breath I breathe this life

Is your breath breathing too,

Every song and whispered prayer

Made possible by you. 

The lessons you have taught to me,

I will not soon forget,

Like what a gift it is to save

A life we've never met.

So Donor Bob, this one's for you

(I hope that you like rhyme!)

You've given me amazing things

You've offered me more time.

And Lord, please hear this simple prayer,

Please look down from above,

Guide me to spread Bob's purest gift,

The gift of selfless love.

Amen. 

Blood is Thicker than Water

...and MY blood, apparently, is thicker than it should be.

So I visited my doctor yesterday for a quick clinic appointment, only instead of the normal chest x-ray/bloodwork/PFT routine this visit started with a CT scan, complete with IV contrast. And for those of you who need the cheat sheet version of why this additional test was necessary, let me quickly bring everyone up to speed:

In late January I visited clinic only to find that my PFTs had taken a rather severe plunge from where they'd been in December after all my photopheresis/rejection and port-placement "fun." The drop was concerning enough that my doctor ordered a bronch, which showed no acute rejection but did come back positive for a virus that can cause pneumonia. He also ordered a regular old CT scan (no contrast) and that showed some diffuse patches of what appeared to be infection. The end result of all this was IVs, rest, and waiting, with routine follow-ups scheduled to monitor my PFTs.

Since then, my PFTs have been falling. I'd say that it's been slow and steady, only it hasn't been slow; it's been terrifyingly fast. Since the start of the year I have lost well over 30% of my lung function. The weird thing, though, is that this hasn't presented like typical chronic rejection (or BOS). What I mean by that is the numbers are following a strange pattern, and the CT scans and other tests we've run haven't indicated that this is traditional BOS. And yet my lung function has been clearly falling, so much so that my doctor suggested we might want to consider an open-lung surgical biopsy -- and that I begin the process of updating my testing should I continue my free-fall right up to the point of retransplant.

Um, yeah. Scary.

So this past Tuesday I had my CT with contrast and then I headed up to the PFT lab, where I blew my little lungs out only to come up with numbers that were pretty similar to my last visit. I was trying to console myself with the fact that at least they hadn't gone down drastically, but to be honest, I was in a bad space. More to the point, I was super confused. I felt very strongly, in my heart of hearts, that this wasn't supposed to be the end of my journey with my Delightful Donor Bob. And, you know, I was scared. And sad. And, well, a little pissed off, to tell you the truth.

And then imagine my delight when my doctor called me into his exam room and told me that this latest CT had found -- drumroll please -- blood clots. In my lungs. And some dead lung tissue up behind the clotted area that is most likely what we were seeing on the original CT scans. And my heart, that little clotting trickster that it is, literally leapt for joy.

Only in CF-land could blood clots in the lungs be considered good news, right?

Blood clots are treatable, even if there may be some form of permanent damage from the clots. Blood clots are a known enemy -- which means we know what weapons we have to use against them and we know what strategies generally work to get things back on track. Blood clots do not require open-lung biopsies or testing, both of which were cancelled before I skipped out the door from clinic. Most importantly, though: blood clots are not chronic rejection. My lungs are not failing, nor is there any reason at this point to believe that they will.

Honestly, I need to take a second to let that one sink in.

I woke up this morning still clotted, but feeling infinitely more free. It's appropriate that just the other day I wrote about my gratitude for my donor, because this morning it was reaffirmed to me 1,000 fold. I have so much living left to do, and it looks like these lungs are going to have to stick around and come with me while I do it. For that, I know that I am beyond blessed.

So there you have it, beautiful people: all the (lung) news that's fit to print. And while I still have some tests to get through and some treatment to sort out before I can call this latest chapter "over", I can also delight in the knowledge that there are many more chapters to be written.

And I hope you'll stick around to share them.

The Latest Thing

Two years ago, I was angry.

I was at the time just a few months post-transplant. Not long before I had been struggling to breathe, gasping for air, and praying for life every single time I dared to fall asleep at night (assuming, of course, that I could fall asleep with all the coughing). I had been scared -- terrified really -- and I had been losing hope, but I had clung tightly to the notion that post-surgery things would be different. They were.

Immediately after waking up from having my lungs removed from my body, I realized I was in a whole new world. The drugs were different, the doctors were different, the ICU was different, the food was different, my body felt different -- even the floor on the hospital was different, as transplant patients have our own special ward. And, most importantly, I was different. I mean, sure, I was still me, still Piper, but I had gone from knowing almost everything about life with CF to knowing almost nothing about life with new lungs. For the first time in memory I was a "rookie patient" to some degree, and it was not a fun feeling for someone used to being able to tell even her doctors what's what. There I was, the "new me" I had been promised with all the breathing and life that I had hoped for, but also with a lot of questions and worries and general uncertainty. And, as it turned out, the "new me" was also a diabetic.

So I was angry. I remember sitting in the waiting room of my diabetes center making a mental list of all my grievances to unleash on my doctor or diabetes educator as soon as they called my name. I remember staring down at the waiting room floor from above my surgical mask, unwilling to meet the eyes of the germy little kids a few seats down or their parents who no doubt thought I was some sort of leper who should immediately be shipped back to my colony. I remember that I had just come from clinic, where I had been told AGAIN how badly I needed to gain weight, and clutching furiously at the insulin pen in my purse because I was completely unprepared for how to make that happen in a world where I didn't even know what I could eat, or how to eat it. Most of all, I remember this thought:

"I've lived through all this bullshit, lived with CF for 28 years, had my lungs removed, and now they're going to tell me I can't even just sit down and eat a meal like a 'normal' person anymore? Why won't they just leave me alone?!"

Fast forward a couple of years and I'm proud to say that I've moved on from asking that question all of the time. I have also, through a strange combination of eating habits, insulin, and just plain luck, been able to get my diabetes under control and keep it there. And of course I've adjusted to the "new" meds, learned some very important things about transplant through experience, and moved on to the next level of challenges that I know will always be present in my health, but that I also know now that I can handle. This doesn't mean I've become the perfect patient, by any means, but it does mean I've had some time to work with my new body, to figure out my own priorities within it, and to live with the restrictions of transplant (everything from no grapefruit to masks in hospitals to new and scary medical issues). Not just exist with them, mind you, but really live with them.

And I'm proud of that. I'm proud of us.

Life with CF is a constant adjustment, and anyone who says that it's not a challenge to make those leaps is flat-out lying. When I burst into tears one day at my nurse after she told me I couldn't attend a large, indoor party not far out of transplant, she thought I was nuts. I'm sure she was wondering why I cared so darn much about one stupid thing when here I was, alive and breathing. Seems silly, right? But the simple answer was that I didn't care so much about one event. I cared about the total sum of the change, and I cared a whole heck of a lot that my disease was allowed to dictate what I could and could not do. That, for me, was and is and will always be a huge deal. If we don't acknowledge the loss inherent in imposing even seemingly small (but collectively HUGE) restrictions on those with chronic illnesses -- for whatever reason -- then we fail in recognizing the entirety of the experience.

Ultimately, I'm glad I got my sugars under control, as much as I wish I'd never had to. I'm glad I got new lungs, as hard as that was and in some ways continues to be. I'm glad I'm alive and grateful to the people who helped get me here, no matter how much loss was incurred along the way. But that doesn't mean I'll let my gratitude be the only thing I feel. It doesn't mean this stuff is (or even should be) easy to accept all the time, just because it might make sense medically. And it doesn't mean I won't work as hard as I can, with every breath of this "new" life I've been given, to make sure that I continue to (re)create myself and my experience within each new circumstance. Because as far as I know there's only the one thing CF can never control: us.

Love and light, beautiful people.

The Best of Times

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way." -- A Tale of Two Cities

When I first read these lines in my high school English class, I remember being pretty ticked off. For starters, I was 100% sure that if I ever wrote a (run-on) sentence with that many commas my English teacher would promptly kick me out of the class. For another, I was also certain I was going to have to write an essay on the meaning of Charles Dickens' famous opening line, and I had absolutely no clue what that meaning might actually be. This line meant that I was immediately turned off by a book and an author that, as an English major and then a law student, I would find myself returning to over and over and over again. And yet, as many times as I read it, I never really understood that one long, annoying, contradictory, and admittedly brilliant first sentence. I pretty much decided Mr. Dickens must have suffered a slight case of multiple personality disorder and left it at that.

Until now, anyway.

Several hundred miles from where I sit right now, people are gathered together in a room at the CFF's annual Volunteer Leadership Conference. Sadly, infection-control rules and respect for my own health and that of my fellow CFers means that I can't be there with them in person. Instead, I spent yesterday having a bronchoscopy to determine the cause of a severe drop in my lung function over the past couple of months. I am now spending today with my puppy, watching the snow fall, hopped up on more steroids than a professional baseball player, and getting ready to start yet another course of hardcore antibiotic treatment to fight the ongoing pneumonia in my lungs. It is, I'm pretty certain, the kind of day I could spend feeling legitimately sorry for myself if that were my style, if for no other reason than I'm finding myself once again fighting an uphill battle against this obnoxious disease. If for no other reason than I wish with everything I've got to wish with that people with CF weren't limited by things like infection rules (necessary as they are) and bronchoscopies. If for no other reason than we haven't cured this damn disease yet, and quite frankly, it's been too long already. If for no other reason than it is winter, and according to Mr. Dickens that might just be reason enough.

But it's not.

This winter, the CFF is moving forward with a speed that, just years ago, would never have seemed possible. We have an end game in sight, and all we need to push us there is money -- and a little bit of magic. And magic, guys, well, the CF community has always had that in spades. More importantly, we have the people we need to lead us there -- and by that I hope you know I mean you. I mean all of us. Hearing from CFers participating in the conference safely via live stream makes me smile. Watching the internet fill with pictures of slides and real conversation about the future makes it even better.

Spring of hope, indeed.

I also just heard from my own doctor, who told me that although my current situation is frustrating, it is also super hopeful. Steroids, while obnoxious, stand a very good chance of knocking this thing out and returning to me the lung function I thought I had lost. This snow, which I thought was pretty much just useless bad weather, instead turned into a celebratory romp with my puppy as I watched him delight in turning himself into a wet, smelly, snow-covered mess that promptly curled up on my couch as soon as we got back inside. I don't mind one bit. I have meds to start, friends to visit, money to raise with the great folks from the Cystic Fibrosis Awareness Foundation, and a whole lot of life to live this weekend.

I'm a firm believer that patience is the hardest virtue out there. Being sick and waiting for the numbers to come back up, working hard and waiting for the science to be there, knowing the science and waiting for the drugs to help specific mutations, finding the drugs and then waiting for approval -- these are the most frustrating and the most hopeful situations I can imagine. They are the moments when we feel the most overwhelmed: with excitement, fear, happiness, urgency, and pretty much everything in between. They are the best of times, they are the worst of times. And we, beautiful people, are blessed enough to live in them, walk through them, and to write our own stories.

It is the season of Light. And we have everything before us.

Sweet Charity

When I think of lung transplant recipients, there are a few words that always come to mind. Words like strong, patient, courageous, determined, resilient, and, yes, even lucky. We may come from diverse backgrounds, we may have different diseases and look as different as night and day, we may not share a political persuasion or a continent or even the same general philosophy of life, but all of us have been through something fairly close to hell and back, and all of us have managed to survive. When I look at my fellow lung transplantees, I see a group of individuals who form a true community of souls (both our own and those of our donors) -- each of us together strong, and each of us individually exceptional in our own right. Or, to put it another way, I stand forever in awe of lung transplantees, of donors, of those waiting for transplants, of our families and our doctors, and of anyone living with disease. I'm pretty sure I have a seriously bad case of Chronic Admiration Syndrome for you guys, and I truly hope it's contagious.

So you can imagine my super excited reaction when, a few weeks ago, I received an email from an amazing woman, fellow Colorado native, and (two time) lung transplantee. Oh, and did I also mention FAMOUS OPERA SINGER?! Because yeah, she's got that box checked off too. Talk about putting your new lungs to some seriously good use. 

Meet Charity Tillemann-Dick, beautiful people, who has been wonderful enough to share her TED talk about lung transplant (times two) and her own powerful "Discourses from The Undead." This woman (a survivor of Pulmonary Arterial Hypertension) has long been one of my transplant idols, and I'm delighted to welcome her as a guest blogger here on MLB. 

Without further ado, Charity, take it away. And thank you, sincerely, for an engaging insight into life and lung transplant. And everything in between.

Transplant is one crazy ball of wax and when I first was facing one, I was SO grateful for the bloggers like Piper who take this issue, head on. I blog too, but I do it with four of my (very healthy) sisters. But even those of us who aren't tx blogstars like Piper can talk with our friends and family about organ donation. We can share our status on facebook. We can ask friends if they're signed up as donors. More importantly, I think we can shift the nature of the conversation on this issue. While 90% of Americans say they support organ donation, fewer than 40% are actually registered as donors. We need to look at what's actually causing the disconnect. I talked about this very topic last fall. 

So let's talk about it. Pass this video on via facebook, twitter and your blogs. Talk about this with friends and family. Mortality is an essential part of life. Let's make sure organ donation is part of it too.

Lots of love!  CharityTD 

Discourses from the Undead: Charity Tillemann-Dick at TEDxMidAtlantic

Transplant: The Fairy Tale

Oh, hello again, beautiful people.

I've struggled a little with how to begin a blog after so long (nearly 2 months) of total, selfish absence on my part. I do know I want to say a sincere thanks to all those who emailed/messaged/commented to check in on me. I'm so grateful to be a part of this community, and I do promise to be a little better going forward on the blogging front -- or at least to try. And to make it up to y'all, I thought maybe I'd tell you a little story. So settle in, grab the popcorn, and get cozy, and I'll tell you the (mostly) true story of Transplant: The Fairy Tale.

Once upon a time there was a totally drop-dead beautiful young woman named, um, well let's call her Pipperella. Pipperella was smart, sassy, fun, kind, warm, loving, and just all around awesome*, and Pipperella had been blessed with a very wonderful life.

*As an aside, she was also incredibly humble. Always.

Now Pipperella also happened to be born with a couple of funny, mutated genes that sometimes made that very wonderful life a little more complicated. One day her wizard doctor told her that those pesky little genes meant that she needed to consult the special wizard doctors a few floors up to see if they could magically help her breathe again. These special wizard doctors told Pipperella that they could indeed help her, but that she would have to wait for a brave, unknown donor prince or princess to come along first. Then the wizard doctors would put the young woman into a deep, dark sleep and work a special spell to see if the amazing donor prince/ess could be just the right match for our beautiful heroine. They also explained that, in exchange for this wonderful magic, Pipperella would have to do some "amazing things" for the rest of her life to help keep the amazing donor prince/ess happy and keep the magic working. They explained that it would be a long journey with lots of bread crumbs dropped along the way and plenty of witches and goblins and trolls (oh, my!) hiding in the shadows. And they also said that they were pretty sure it would be worth it, because this is, after all, some really damn special magic.

And so she accepted the journey. And she decided to blog it.

It's been over 2.5 years since my amazing Donor Bob saved my life. In that time, I have travelled home to Colorado, I have worked toward a cure, I have met new people, I have tried new things, I have (almost) achieved a new degree, and I have LIVED. And, of course, I have blogged -- sometimes more than others. I'd apologize for that last part there, but I also know that this is a community of people who totally get it. And by "get it" I mean that you all get that life is a balance -- between body and mind, between public and private, and between taking the time to share our stories and taking the time to live them.

In the past 6 months or so I have been receiving treatment for a variety of "fun" little ailments ranging from the Rejection That Would Not Quit (But Finally Did) and The Tunneled Dialysis Cath From Hell of 2012 and the current Pneumonia That Will Not Quit (Yet) of 2013. And, if we're being honest here (and we always are), I have to admit that a few of these little buggers have proven to be some pretty nasty trolls hiding out under my transplant bridge. I'm currently back on IVs and trying hard to "rest" and "take it easy" so that I can hopefully regain some of the lung function I've misplaced along the journey. I'm also trying, truth be told, to grapple with the fact that just a few weeks ago I was able to run and take huge deep breaths and sing at the top of my lungs if I wanted to and now I'm breathing a little harder and spending my time waiting for the aztreonam to finish infusing. It's not a fun plot twist, even if I am totally confident that it's just a temporary one. I waited an awful long time for my magic spell, guys, and I'm frustrated that some of my goblins keep on rearing their ugly heads. I mean, sure, I know I'll slay this dragon, and the next (and the one after that), whatever it might look like, but that doesn't mean I have to enjoy the fighting.

But that's the funny thing about fairy tales: there's always some question about what to do with your happily ever after. Real lives don't stop when the last page is turned, after all, and real people are always going to have some residual issues after they eat a poisoned apple. My current self is a testament to the stories I've lived through, with Pipperella's determined attitude toward her disease to help me fight my monsters and Prince Donor Bob's sweet spirit reminding me of the importance of patience -- because truly great things can come to those who wait. And somewhere in the middle of all of that, between the stubborn and the kind, is where the real magic happens.

And we lived happily ever after.