Oh Yeah, THAT Thing

Recently my hospital has been featured in a wonderful series on ABC, a real-life medical drama called NY Med. In fact, my own amazing friend Lyndsey is set to appear in an upcoming episode on August 14, featuring her journey with CF to lung transplant. Lynds is a fabulous woman who pretty much embodied strength during the waiting process, so needless to say I'm super excited to watch her strut her stuff and help raise awareness of CF and organ donation.

All of which means, of course, that I've been watching this show despite my dislike of medical shows in general. Basically I feel like I get enough of this stuff in real life, thank you very much.

But this show I watch, and tonight's episode I was particularly excited about because it featured a heart transplant. Different than lungs, for sure, but still amazing and beautiful and, well, life-saving. So I grabbed my pup and some tea and I curled up to watch this wonderful miracle happen. I watched as he got the call, watched as he was prepped for surgery, watched as he was intubated and put to sleep, and watched as the doctor took a call from the organ procurement team telling him that something went wrong with the donor organ.

And then MY heart stopped.

Every so often on this blog or in my life, I make casual reference to an event I've come to call my "bad dry run." Some of you long-time readers might actually remember that day right around Easter, 2010, when I was called in for lungs, told everything was a "go", prepped for surgery, put to sleep, and intubated. And some of you might remember the post about how I woke up a little while later in the ICU -- without new lungs. It was a terrible experience for my family, a tragedy I can only imagine for the donor's family, and a deeply sad moment for my doctors as well. It was also probably one of maybe two or three times during the entire transplant process that I thought I might not make it. The intubation further damaged my lungs, and my need for oxygen greatly increased. It was, suffice it to say, not cool.

When my surgeon walked into my ICU room that day, I looked at him and whispered "thank you for not giving me bad lungs." I still stand by that statement. I had a team that refused to accept unsafe lungs for me, even when the alternative meant waking me up and facing the effects of anesthesia and sorrow and general chaos. I am beyond grateful to them for making that terrible but wonderful decision. That day was the first (but not the last!) time that team saved my life.

Right as the episode aired tonight I received a series of texts, all asking "is that what happened to you?" and "wow, you never told us all of THAT!" It's true that I didn't (and don't) talk about it all that much. At the time I knew one other CF woman who had gone through something similar, and I looked to her for strength and support. I didn't say much else about it, largely because I was still processing it myself.

I want to stress that this kind if stuff, while real, is much more the exception than the rule. At the time I remember wondering if I had missed my chance for lungs forever. Looking back, all I can think is how grateful I am things worked out as they did. I still pray for my would-be donor often, and I'm thankful for his gift just as much as I am for the one that came two months later, on June 12. Donor Bob saved my life, but ultimately it was that first donor who, through his imperfect gift, ended up saving my faith. And when you're waiting for lungs, that means everything.

Congratulations to John on receiving his transplant and to both our donors for their amazing gifts -- all four of them.

**Update: for those who wish to read my original post from April of 2010 (written directly after the "bad dry run"), you can do so by copying and pasting the link below, or by looking in the archive sidebar to the left.

http://amatteroflifeandbreath.blogspot.com/2010/04/stranger-than-fiction.html

Hey CF, Chew On This!

If you've ever stopped by my apartment on a random Wednesday night (or read the little author's bio attached to this blog, for that matter), you might already know that I am a HUGE fan of Bravo's Top Chef. Seriously. I have every single season of that show -- and most of the spin offs -- downloaded or saved onto multiple mediums: my computer, my iPad, DVR, DVD. I'm such a huge fan, in fact, that my father once gave me a Top Chef trivia game to play in the hospital, which I did until people started refusing to visit me for fear of being quizzed about Marcel from Season 2. Obsessed? I prefer to consider myself "culinarily invested."

Because, of course, CFers love food.

So imagine my excitement when I learned through an announcement from my local CFF chapter that NY's very own amazing Susan Torres will be competing in this season of Top Chef Masters to benefit none other than . . . wait for it . . . The Cystic Fibrosis Foundation!!! Holy amazing coming together of my two favorite things, right? The new season starts on Wednesday, July 25, on Bravo. Please tune in (as if you really needed another reason)!

Of course, some of us watch food and some of us actually MAKE it. I'm definitely not talented in the latter department, but for those of you who are, I received an email today that might just get you cookin' up your own kind of magic.

Yep, CFChef is back, and this time it's going holiday style!

CFChef is an educational and networking website sponsored by our good friends and partners at Abbott Pharmaceuticals. Their new WINTER HOLIDAY contest is seeking new CF-friendly recipes for Thanksgiving, Christmas, Chanukah, and other winter favorites. This is YOUR chance to share your awesome skills with the community.

WHEN: Contest opens July 20 and runs until September 14.
WHERE: Go to www.chef4CF.com to enter and for full contest information.
WHAT: All your favorite CF recipes. Entries will be judged by a registered CF dietician, who will select winners based on nutritional value, ease of preparation, and the story behind the meal.
WHY: Because who better to help educate and share with the CF community than all of you?
WHO: Anyone touched by CF can enter.

So there you have it: two more reasons why food can help keep us healthy, bring us together, and make us smile. As for me, I'm just excited to be a part of this incredible community as we continue to cook up a cure for this deadly disease. And in the meantime, CF, I have two words for you, little monster:

Bite me.

What to Expect

I get a LOT of questions about lung transplant through this blog, but by far the most common is the simple yet personal staple: "what was the hardest part about lung transplant?" And I pretty much always answer this by explaining that, for me (and for most patients I know), the hardest part about lung transplant is managing expectations.

Look, lung transplant isn't a cure, especially not in the case of cystic fibrosis. It's not a snap-your-fingers-and-go kind of deal. Lots of people I know are in and out of the hospital even after their surgeries, although the frequency and severity of those hospital stays seems to vary. In any case, transplant isn't a magic bullet. People who think it's going to be one normally end up somewhat disappointed, if not disheartened and disillusioned.

On the other hand, I know very few CFers post-tx who actually regret it, and that should tell you something. In my own case, I can tell you that by the time I reached the point of really NEEDING new lungs it was no longer a philosophical question for me. I wasn't pondering the relative pros and cons of life on immunosuppression or the possibilities of rejection. Nope. By the time I needed lungs, all I wanted to do was live. I would have taken odds against all the complications in the world just for one deep breath. I knew transplant wasn't a cure, but I also knew that it had the possibility to be a lifeline -- and that was good enough for me.

Managing expectations, to me, means pushing myself within reasonable limits. It means being kind when I can't do something right away (or sometimes when I have to admit that I can't do it all), but it also means choosing everyday to be optimistic about the possibilities. It means knowing the difference between "it's hard" and "it's impossible" and the difference between "I can't" and "I don't want to." It means that unlike what I experienced with end-stage CF, most of the time when I wake up sore and achey and feeling kinda crappy, I need to trust that I can push through it and that everything's going to be just fine. And of course it means being realistic when a problem simply isn't going away or can't be pushed through and letting my doctors know -- something that for me, personally, is always the hardest part.

Finally, it means acknowledging when my expectations were in fact wrong, and adjusting them accordingly. I'm two years out of transplant haven't gained a pound, for example. It's not what I expected, and for me it is disappointing, but I have to learn to deal with it. I'm adjusting my expectations to try and be happier with what I have, even if it does mean that Boost Plus and I are gonna have to stay friends for now. Blech.

I have a lot of friends out there currently facing the transplant decision. I remember that process -- the fear and the hope, the excitement and the dread, the dreams of what would come later and the nightmares about what "could" happen at any given second.

So, for all of them and for all of you, here's what to expect from life after lungs:
Expect beauty.
Expect obstacles.
Expect to be happy.
Expect to shed tears.
Expect to learn lessons, some of them hard.
Expect to have to push yourself.
Expect the best out of everyone around you -- including yourself.
Expect the unexpected.
Or, in other words, expect LIFE.

Happy breathing, beautiful people.

True Confessions of a Non-Runner

So one of my many (silly) excuses for not updating this blog more frequently these last few months is that I've been busy doing other stuff. Stuff like hanging out at my all-time favorite hospital (doing "amazing things," of course), working hard to get my prograf level stable, trying to stay hydrated in the insanity of NY summer heat, and, of course, running.

Yes, you read that right.

Back in January a group of my post-tx CF "cysters" and I decided to sign up for the Boomer Esiason Foundation's 10K "Run to Breathe" in Central Park. I should probably preface the rest of this post by explaining that I am IN NO WAY a "runner." I am in no way a jogger. I am a decent enough walker, especially now that I'm no longer allowed in the subway because of germs, but that's about the extent of it. Future Olympic track superstar, I am not.

But I agreed to do it anyway because I figured 1) it would be a good way to challenge myself and my new lungs, 2) outdoor races are a good way for the CF community to gather together, since there's less potential for crazy germ spreading than at indoor events, and 3) if I could get into better shape AND raise some money/awareness for a good cause it would be win/win. Plus, you know, everybody else was doing it, and I had like 7 months to train, right?

Well, sort of, at least. Turns out my body, as so often happens, had some other plans for those 7 months. Nothing overly serious from a CF perspective, mind you, but just enough excitement to keep me on my toes. A sinus infection, some slight dips in my PFTs, a weird prograf mystery -- little stuff like that. And then, quite suddenly it seemed, I found myself at the gym this morning with less than a week to go and still a LOT of ground to cover.

Suffice it to say that by the time I stumbled off the treadmill and headed for the gym exit, I was feeling less-than-inspiring, and more than a little concerned about how I was gonna find the energy to cover a 6.25 mile run/jog/walk in just a few days. My hand was on the door handle when I felt a tap on my shoulder...

Lady: um, excuse me, but I think you may want to run to the locker room? You've got some white stuff in your hair.
Me: (touching my hair) thank you, but that's just salt. I'll wash it off at home.
Her: oh! Do you have CF, by chance? My nephew has that disease!
(I nod.)
Her: wow, how old are you? Is that rude? I'm sorry, it's just...(tearing up).
Me: it's okay. I'm 30. I had a transplant 2 years ago.
Her: And you can run?! You're a runner?? Wow! That is the best thing EVER! I'm so happy I met you! Wait until I tell Ryan I met a 30 year old RUNNER with his disease!

We hugged after that, and she left. I thought about calling after her, about catching up and explaining that I'm NOT a runner, that I'm not as on the ball with training as I had hoped to be, that I'm worried about the heat and cramps and prograf and salt and the results of today's most recent bloodwork and that I feel like pretty much anything except a role model right now because I'm hot and exhausted and did I mention before that I am NOT a runner?!

But I didn't. I just smiled after her and tried to look like the strong, CF runner she thought I could be.

And just like that, I found the energy to run all the way home.

On Being Patient

One of the many great "perks" of post-transplant life is that you get to make lots of new friends in the phlebotomy (blood draw) lab. Frequent bloodwork is a hallmark of good care after a transplant because so many of the drugs we're on require specific levels and/or can affect other things, like kidney function. The bloodwork routine seems to be even more aggressive for post-tx CFers, and it's even MORE aggressive after something weird happens -- like, say, when your prograf level suddenly skyrockets to ridiculous heights for no apparent reason.

Adding to the fun is the always exciting game of trying to time any bloodwork so that it falls more or less exactly 12 hours after your last prograf dose. I know that probably sounds pretty simple (show up 15 minutes before the desired time and that's the end of it), but trust me: when you're dealing with crowded labs and misplaced requisitions and overworked staff members and the timing of multiple tests/appts in a single day, it can get kinda hectic. My general strategy is to allow approximately one hour for any given test at my hospital, meaning that if I need PFTs first and bloodwork second then I should arrive about 10 hours after my last med dose.

Most of the time, this works.

Today I needed bloodwork. The bloodwork was due at 11, so I used my one test = one hour formula and arrived at 10. I went to grab my requisitions and was told they weren't there, and that I needed to wait. Fine. Then I was told to sit outside, in a separate little area along with another patient. Okay, fine again. So I do, and I'm sitting, and everything is great until the other patient leans over and tells me I should be careful because he's sick. Not fine. I'm immunosuppressed -- actually I'm OVER immunosuppressed right now -- so that's not gonna work.

I peek my head back into the office and am told they're still waiting. It's about 10:15, so I'm still okay on time, but not so much on seating arrangements. I tell the staff this and they agree I should go to the main waiting room. So I do. And I sit. And I wait.

At 10:40 I decide I should probably start being annoying if I want to get bloodwork done in time. I stand up and start to walk back to the office, but am stopped by a tech who says reception is "going nuts" trying to find me. Um, okay. Go back and it turns out they had looked for me in the original spot, where the sick patient was still sitting. Seriously?

Finally armed with the scripts, I head down to the blood lab and, thankfully, there's no wait. Also thankfully, it only takes 2 tries to get all the blood they need (trust me, 2 tries is nothin'). So now I'm all happy again and the blood tech and I are joking around and then she hands me back a prescription and says "you gave this to us but it's for PFTs." Huh?

Back up to transplant to ask about whether I need PFTs, but no one knows. Reception just printed the slips they said were ordered. A full set of regular clinic slips would also include x-ray, so I know they didn't just print a full set by accident. Did my doctor order PFTs without telling me? Seems possible.

So I email my doctor, head to the PFT lab "just in case" and find it PACKED. Not cool, transplant gods. Not cool at all. Still no response from doctor so I do what any normal transplant patient would do: I take a completely arbitrary poll of other patients I know via text message. Weirdly enough, none of them knows whether MY doc has ordered PFTs for ME today either. Shocker.

Did I mention I normally leave an hour per test? That's not an arbitrary number, guys. That's because, in my experience, every test actually takes between 20 minutes (on a good day) and 45 minutes (on a less good day). Today was not a good day.

Blessedly, after about 35 minutes of waiting my doctor wrote me back and told me I did not, in fact, need PFTs. Getting up to leave I could actually feel the jealous stares of my fellow inmates -- er, I mean patients -- in the waiting room. Looking at my watch revealed that I had been in the hospital 2 hours, less than 5 minutes of which involved actual medical work. I had a strong desire to yell "freeeeeedom!" Braveheart style on my way out the door.

Of course, not every day is like this one at my hospital. For every lost requisition or wasted minute there's an equal story of a comforting staff member or helpful receptionist or super fast appointment. And, of course, the quality of the team is out of this world good -- and at the end of the day that's what truly matters, right?

Then again, I think I know where they got the term "patient."

Of Lungs and Lashes

Before I got my transplant I heard a lot about what life would be like with new lungs. Friends of mine who have had lung transplants told me all about their experiences and my wonderful doctors tried to prepare me for what to expect after surgery. All of them threw around adjectives and phrases like "wonderful", "exciting", "crazy", "unbelievable", and probably the most common description of all: "like a roller coaster."

I would explain the roller coaster analogy more or less like this: when I'm healthy with my new lungs, the highs are amazing. It's exhilarating and fun and new and wonderful, all at the same time. When something goes wrong, though, the dips and drops can be scary. I don't understand transplant like I do CF. It's 2 years of experience up against 30 (or at least 28, if you only want to count pre-tx CF years). Even minor speed bumps in the transplant journey (of which there are many) can seem like gigantic mountains if I'm already feeling fragile, or worried, or just plain confused. And for the most part I think I actually do a darn good job of keeping these scary moments in perspective -- or at least of keeping my outward calm even when inside I'm wishing I could just curl up in a corner. I am a CFer, after all. I'm pretty well practiced in the fine art of survival.

But there are some moments post-tx that just continue to baffle me, even as I learn and adjust and remember to breathe through the tough parts (upside: I CAN breathe through the tough parts now!). There are moments when this whole game of organ musical chairs seems just a little too strange for my taste. And, of course, there are moments when I'm caught off-guard and clueless and just flat out unsure whether I should laugh at my dumb luck or be scared out of my mind about the possibilities for error. So I figure hey, why not try a little bit of both?

This past Monday I woke up feeling somewhere between "huh, I think I have a stomach bug" and "wowza, I am never eating Chinese food again. Ever." Then again, sour stomach isn't exactly uncommon in CFers, and occasional nausea is pretty par for the course in transplantland on top of that, so I actually wasn't that concerned. I remember thinking that at the very least, if nothing else, I was going to man up and take my f-ing transplant drugs. You know, like a boss. Like a good patient. Like a hard. core. CF warrior.

So I did. I took all of them, in fact, and with an emphasis on my all-important immunosuppression. I took my cellcept, took my prednisone, and I took my prograf.

Got that? I took my prograf.

Weirdly, as the day wore on I seemed to feel weirder and more out it, but I still didn't have any registered symptoms beyond my stomach -- no fever, no chills, no anything else that might have been a major red flag. I was fine, and I was taking my drugs like a GOOD PATIENT.

And then I fell down the stairs.

There are two floors in my apt, but I live almost exclusively on the top one. On Monday I had to go down to the lower floor to get something, and on the way down I tripped. The immediate cause was a stray dog toy, although why I didn't see it seemed like anyone's guess. But I didn't see it, and I did fall, and I crashed headfirst into a bookshelf. When I stood up a few seconds later I was bruised up, I had a skinned knee, my dog was cowering in the corner, and I had somehow managed to rip off half my eyelashes on one eye. Yes, you read that right. Half the eyelashes on one of my eyes are now gone, completely, from the root.

Of course, like any sane person my immediate reaction was not to be grateful I hadn't hurt my eye even worse or to worry about the wounds I had covering my body, but to hit the laptop. Specifically, my first act was to google "do eyelashes grow back?" like the wise and not at all superficial zen master that I am. Turns out, this is a common problem, apparently most often caused by accidents while using an eyelash curler. In my sister's case, she once burned off her lashes, as she later told me on the phone. And yes, they do grow back. It takes up to 6 weeks.

Anyway, that was Monday, and after all that excitement I pretty much decided to quit while I was only slightly behind. Tuesday I spent all day at the hospital, first for clinic and then for a desensitization. I felt okay that day, but still a little strange. My doctor called me "fragile" during my appt, which was probably an astute observation. At any rate, I did my appts and went home 7 hours later, only to receive a late-night call from my doctor telling me my prograf level was...drumroll...50.

Normal, btw, is like 8.

Fifty is obscenely high. So high we actually thought it was a fluke at first. I didn't take the drug for 48 hours, retested, and my level was still 27. In other words, it wasn't a fluke. Of course, given that a main symptom of prograf is feeling fuzzy and a little bit out of it, at least the super high level means that I'm probably not just losing my mind tripping and acting "fragile." Or, you know, at least not yet.

Thankfully, my level is going down. My kidneys are, as always, proving their worth and being generally awesome sauce about the whole ordeal. And my dog is grounded until he starts putting his toys away properly.

But, kinda like the fall, we're still not entirely sure what exactly caused this huge jump in my prograf levels, which usually run super low. And, like the fall, we're grateful that things weren't any worse even as we search for better answers. But both the high and the fall are reminders that life post-transplant is most definitely a roller coaster, and the sudden changes in altitude can sometimes come out of nowhere.

As for me, I'm just grateful that I'm here, I'm breathing, and even my eyelashes will (eventually) grow back.