A Christmas (Party) Story, And Then Some

Okay, so picture the scene: A beautiful, charming, stylish, and incredibly witty young woman enters a Christmas party. Let's just say (purely for the sake of argument, of course) that she is pretty much exactly 6 months out of a double-lung transplant for cystic fibrosis. She is also, it goes without saying, very humble and modest. Obviously.

At some point during this little get together, an old friend approaches. He smiles at our heroine and strikes up conversation. And then, having gone through a few basic courtesies, he launches right into the million-dollar question. "So," he says, eyes twinkling, "what have you been up to for the past couple of years?"

Wow. Are you sure won't settle for a detailed explanation of the laws of physics? Because I'm guessing that would be simpler, and take less time.

Okay, fine. I guess the simple answer to that question is right there on the left sidebar of this blog. After all, this is where I've been chronically my journey for the past 2 years, so what better place to look for a neat and tidy little explanation of the transplant experience? And right about halfway down is the handy little "blog label cloud", which proves that the 3 biggest topics discussed here have been the following:

Transplant, IVs, and Life.

Yep, I think that about sums it up. Thanks, label cloud!

The last year and a half of my life -- starting in about May or June 2009 and continuing right up to the present -- have pretty much been dominated by the idea of transplant, and for good reason. Actually, if you want to get technical about it, transplant started taking over way back in January 2008, which is when I first started the referral process for my evaluation. Because I gotta be honest here: once someone suggests that you might be better off ripping out one (or two) of your organs and replacing them with parts taken from a dead guy, well, let's just say it gives you something to think about, to say the least. I think, though, that for me in particular the idea of transplant really became kind of front and center in mid 2009, if only because that's when I officially left my job, asked my mom to move into my apartment, and got officially listed for new lungs. In other words, that was the time when transplant moved from an abstract concept that hovered generally in my future to a more concrete medical step necessary to save my life from end-stage cystic fibrosis. Wow, what a ride.

And, coincidentally enough, June 2009 is also the time when the topic of IVs hit center stage for me. Don't get me wrong here -- I was on IVs more often than not throughout most of 2008 and definitely the first half of 2009 (not to mention at least once or twice a year, every year, starting at about 16 years old), so they were already a well-established part of my life before that pivotal month. But it was in June of 2009 that I began, while on a boat trip off the Turkish coast of all places, to experience the fevers and other symptoms that heralded the impending demise of my first implanted port-a-cath after 9 years in my upper left arm. And it was, in turn, the death of this first port (and the systemic infection that accompanied it) that marked the official start of over 1 year of continuous IV antibiotic use. Oh, sure, I've had two or three short breaks -- with a definite emphasis on the "short," since none so far have lasted more than a week or two, tops -- but the fact remains that they have been few and far between, to say the least. In fact, this morning my transplant doctor examined my port and commented that it was a bit red. My response? "Give the poor thing a break." It's been working non-stop for a year (which is when I got port #2 placed, by the way). It is very, very irritated, and you know what? I don't really blame it.

Of course it goes without saying that I am grateful. I am grateful for the advancements made in transplant and the donor who offered his organs to save my life. I am grateful for the option to have a double-lung transplant, as I know it is a privilege that some never get to experience. I am grateful for there are IV drugs that still work and for the new, infection-free port that feeds them to me.. I am grateful for the doctors, family, and friends who have seen me through all of this. All of which is NOT at all to say that I'm not a little irritated with the whole process at this point. Because, just for the record, I totally am.

On the other hand, every minor (or even major) irritation along the way seems to come with a payoff now, and I guess that's where the whole "Life" thing comes into play. Because the last year and half -- and in particular the last 6 months -- have been, in many ways, more filled with life than I ever dreamed possible. I have been absolutely elated at new possibilities and tragically sad as I mourned the loss of my old lungs. I have been terrified of death and exhilarated by the hope and faith that everything would turn out as it should. I have triumphed and I have failed. And, more than anything, I have loved and been loved a million times over. Which is, in my mind, kind of what makes life worth it anyway -- and it definitely reinforces the idea that "Life" has made a up a very pivotal part of my journey. I hope that continues to be the case far, far into the future.

All of which the young woman briefly considered explaining to her friend before finally giving a huge smile and opting for the far more succinct: "well, it's been one hell of a crazy miracle, but I'm extremely grateful to have been given the chance to come along for the ride."

And I couldn't have said it better myself.

****

Speaking of Transplant, IVs, and Life, I had my 6-month check up today at my transplant clinic. Overall, things are still going great with these beautiful new lungs. My FEV1 continues to hover at about the 78-80% range for FEV1, which is pretty darn impressive when you consider where I was just a few short months ago. I am having some very minor symptoms, which led to a nasal swab to check for viruses and a bronch -- likely scheduled for later this week. I'm at peace with the plan, in part because I still feel pretty fantastic and in part because i still really trust my doctor and care team. As tough as transplant can be sometimes, they seem wise, compassionate, and capable in their approach to dealing with any issues that arise. And as much as I hope that the bronch doesn't lead to more IVs (because come on, let's face it -- I.DESERVE.A.BREAK.ALREADY!), if that does, in fact happen, I know that I'll deal with it and move on. Because IVs, while admittedly super annoying, are really just another part of Transplant when you get right down to it. And that, my friends, is just a fact of Life.

Enjoy the season, beautiful people.

Riddle Me This

Okay, beautiful people, here's a riddle for your Thursday night pleasure. What has two hands for typing, two lungs for breathing, approximately two thousand doctors to visit on a monthly basis (warning: the preceding figure is just an estimate -- actual number of doctors visited may vary), give or take two more months until her 29th birthday, and two bedrooms in her current apartment -- one of which is now distinctly empty?

Give up?

Yes, you read that last part right. As of right now there is only one person (and one super fat shorkie) living in my 18th story abode. And yesterday, after 15 months of urban not-so-zen, my mother/nurse/roommate/appointment scheduler/pill manager/dog walker/friend packed up her (many) suitcases and made her way out of New York City...and back to Colorado.

Back to her husband (aka, my father), her job, her dogs, her house, her garden, her friends, her favorite coffee shops and restaurants, and, well, her life.

And I, of course, already miss her like crazy. Sampson spent a good part of yesterday evening sitting by the door in anticipation of his "grandma's" return. When being patient didn't work, he resorted to some very un-dignified barking. When that also failed, he heaved a huge sigh and flopped down despondently on the couch. My thoughts exactly, Sammybear.

On Tuesday my mom came with me to a routine transplant clinic appt just to see my doctor for the final time before her big move. Honestly, we couldn't have asked for a better visit overall. Things are going great with my new lungs. My numbers are great and, far more importantly, I feel as though I could take on the world. My friends are sick of me already because I guess they didn't realize that new lungs mean bigger lung capacity (i.e., the ability to talk for hours) and more energy to run around like a madwoman. My dog pretty much refuses to walk with me anymore since I rarely have the patience to stop as often as he would like. Everyone complains that I'm too fast for them to keep up with on the street -- and I revel in every second of it.

There is so much to do in the future. So much hope and promise, and so many exciting options. Without sounding too pollyanna about it all, I'm really looking forward to trying out some new things and flexing my wings a little. The other day it dawned on me that people all too rarely get the sudden chance to reinvent themselves. Life is pretty fast paced most of the time, and there's always a good reason to stick with the status quo. Which, of course, makes a lot of sense from a practical standpoint, but how lucky am I to have a natural break to take stock of myself right now?

Yeah, I said it: I'm lucky. I went there.

Honestly, I'm a big fan of keeping things in perspective. (Um, okay, fine: most of the time. I'm sure I have family members out there who just fell off their chairs in shock reading that sentence.) I'm not about to claim that being born with cystic fibrosis is lucky. Needing a lung transplant in your 20s is decidedly unlucky, in fact. As is being "disabled" or having to swallow ridiculous amounts of drugs to kill your immune system everyday. These things kind of suck, no doubt about it. End of story.

Except that it's not really the end. Because as cynical as I am some of the time, I would be really hard-pressed to try and claim that I'm not lucky -- or at least it would be hard to do that while keeping a straight face. As a law school graduate, I just can't ignore the hardcore evidence.

I was born with an unlucky disease, but I have been lucky enough to meet some awesome people as a result.

I might have been unlucky to need new lungs, but I was lucky enough to get them. So, so lucky.

I am unlucky in the sense that I'm a hardcore veteran of the medical system, and lucky enough to have had some of the best doctors I could ever imagine.

I am currently in the unlucky position of trying to recover from a super intense surgery in which they swapped out some of my most vital organs for those of a stranger (um, wow, right?), but that very fact also means that I find myself with a lot of time for reflection, planning, personal growth, and education. That, my friends, is pretty darn lucky, even if I do say so myself.

And I mean, sure, these are only silver linings in what some would consider a very cloudy sky, but that doesn't make them any less precious or their shine any less brilliant. Which means that even as I was (and will be for a long time) very sad in one sense to see my mom get in that cab to the airport, I was also unbelievably grateful. Not just for everything she gave me when she was here, but also for her grace and wisdom in knowing how to wave goodbye and get on that plane. It was a lesson by example that I hope I can carry with me forever -- how to care for someone with great compassion and love, and then to step back to allow that person to care for herself.

So what has two hands for typing, two lungs for breathing, approximately two thousand doctors to visit on a monthly basis, give or take two more months until her 29th birthday, two bedrooms in her current apartment -- one of which is now distinctly empty -- and is quite simply one of the luckiest girls in the entire world?

Well, I think we all know the answer to that one. I love you, mom.

Nothing to Say (Except Everything)

There isn't much to write about today.

I spent the day up at the hospital, where I had appointments with both the diabetes educator and the transplant team. Included in the madness was the normal litany of tests: blood work, chest x-ray, and PFTs. In other words, we were there from 10 am until 4:30, but wow, was it ever worth a little exhaustion. I got great advice from the very nice and very helpful diabetes educator, who had no qualms at all telling me that I need to be eating carbs and treating myself, well, like a CFer when it comes to planning my meals. She adjusted my insulin, gave me some great aides to help me get started on carb counting, and was generally very encouraging. She said an A1C of 5.1 (my number) was excellent and she explained how the prednisone can cause my sugars to peak in the early afternoon. She is going to review my log for the next few weeks and keep adjusting my scale until we find something that works to allow me to eat exactly what I need to eat to feel healthy and gain weight. Most of all, she was friendly and seemed intent on reassuring me that this whole diabetes thing is not going to be a huge obstacle to life after transplant. I knew that, of course, but it was great to hear it from a knowledgeable source.

There isn't much more to report -- other than it was exactly what it should have been.

I went from there on to the pulmonary part of the program. I got all the requisite testing done and then headed in to see one of the wonderful doctors on my team. She looked at my x-ray and declared it completely clear, listened to my chest and exclaimed over how good it sounded, pointed out the log that shows a steady improvement in my PFTs each week despite the rejection, and went over all my cultures and bronchs with me. She asked me if I was having any symptoms and I answered no to all of them, at which point she laughed and declared that "we can't argue with that." Long story short, she seemed thrilled with my exercise routine, happy with my lung progress, and optimistic about my continued success post-transplant. It seems like my lungs are doing exactly what they should do in their new home.

And she's right -- we can't argue with that.

On the way home I dropped my mom off in the West Village and decided to walk home to lower Manhattan/TriBeCa. It was hot enough that I had some serious salt on my skin by the time I reached my apartment, but the day was beautiful and the people watching in NYC is always worth a little extra time outside. So I wandered along for a couple of miles and ended up back with my Sammybear in our cozy little apartment, where I finished my book and promptly started a new one before settling into a nice nap and then joining my mom and sister for an amazing dinner. It was low-key and relaxing and I used my new carb counting scale to ensure that I could even have dessert.

Just a nice walk, some downtime, and dinner out to finish the day -- nothing more.

In other words, I really wasn't kidding when I said that I have very little to write about today. My health and my lungs are so "normal" and run of the mill that they hardly seem worthy of their own blog. My life, and my breath, are blissfully devoid of dramatic swings or crazy events that simply beg for public retelling. The scariest thing to happen to me today involved a cab driver and New York traffic. The most annoying healthcare-related issue I'm facing right now is a crowded waiting room or the fact that long days at the hospital make me cranky. And the only reason I'm not taking my dog on more walks is that his short little legs mean he can't keep up with my pace. Seriously.

There's nothing to say -- and that makes it quite possibly the best blog post I've ever written.

Over the Hump

Clinic again today, and oh! What a difference a week makes!

Seriously, this visit was night and day from the first post-tx clinic a week ago. Same wonderful people, same buildings, same tests, but way less confusion and about 1000 times more energy to get through the day. I never once felt out of my element or overwhelmed, and that's saying quite a bit considering last week's 3-ring circus.

Overall everything went well. PFTs still moving in a good direction (amazing to see after watching them go down for so long!) and I had a good Q & A session with my doctor. Nothing out of the ordinary, really. The best part for me was just walking around that huge medical complex without feeling like I was going to melt into some kind of puddle on the floor. I still haven't fully regained my strength, of course, but I could actually feel the difference between last week and this one, which was a much-needed spirit boost for sure.

Another amazing thing is actually meeting some of the other post-tx patients at Columbia. The post-tx patients go to clinic at different times than the pre-tx patients do, so it's a whole new crowd. Well, "new" in the sense that I haven't met a lot of them in person, but today I was lucky enough to bump into a fellow CFer from the CF boards (who also sometimes reads this blog!). He was one of my major inspirations for pre-tx transplant exercise and recovery, so to meet him was honestly pretty special. It continues to amaze me how vibrant and resourceful the CF community is. Seriously, we are a pretty amazing group of individuals, if I do say so myself. Much as I hate this disease, I feel oddly blessed to be a part of that larger picture.

I have to say again that I love the doctors and staff at my hospital. They always make sure everything runs as smoothly as possible, and they somehow manage to stay so nice in the process. I also got to drop by to see my CF nurse today after my visit with the transplant clinic. It was great to see her, and I felt so encouraged by her comments. It feels amazing to suddenly have people saying I look better, or healthy, or any other of a number of positive adjectives. To have gone from a slow but steady decline to a sudden sense that everything is getting better with each passing day is beautiful.

I don't think I have to patronize any of you and pretend that this process has been super easy. It hasn't, and I know I'm not fully over the hump -- whatever that hump really is. I'm still having a lot of trouble just sleeping through the night and doing normal things like eating on a regular schedule. I'm still trying to navigate this new maze of CF/TX-related diabetes. I'm still a little confused by all my new drugs. But I also have come more and more to recognize that this is part of the experience, and I know that in the past few days I've started to remember why I chose this option in the first place. My joy at some of the little things is returning, and to be honest I think it's even better in a way than the elation I felt immediately post-ICU. Because this time it's a real emotion, and it's life, and it's totally worth it.

Humps and all.

Here's The Tricky Part

I made it.

Just got home from my first post-transplant clinic day, and I don't mind telling you all that it was...exhausting? Exhilarating? All of the above?

Okay, let's just go with intense. And new.

The newness of it threw me for a bit of a loop right off the bat, actually. I knew not to take prograf (anti-rejection drug) the morning of clinic before my blood draws, but I immediately got confused on whether I was allowed to eat beforehand, or whether I should take my insulin (sidenote here: I've been on insulin since the transplant to deal with high blood sugars, most likely caused by the high-dose steroids I'm on right now). Figuring better safe than sorry, I held off on everything until after the blood draws, which then left me scrambling for a clean, private place to test my sugars, inject insulin, and then eat a quick breakfast before moving on to my next clinic activity. Turns out I could have eaten in the morning and saved myself the trouble. Whoops. Oh well, did I mention there's a bit of a learning curve here?

Anyway, confusion aside, everything ran pretty smoothly. Col Pres does blood draws (with drug levels), chest x-ray, and then PFTs -- all of which are done on a walk-in basis before you get to your actualy transplant doctor. So since my transplant appt was for 10 AM, I showed up to the hospital at about 8 AM to get the other things out of the way first. I got my blood drawn (veins still bad, but what else is new?), did my x-ray without issue, and then headed over to the PFT lab, where I was lucky enough to meet a woman coming up on her 2 year anniversary of transplant. She and I chatted for a while about everything from time onthe list to transplant recovery to going back to work -- it really is amazing to feel part of the "transplant club" at last! Then I got called back and headed in for my first PFTs with my new lungs, ever.

Now, keep in mind that, as my doctor reminded me, many people haven't even left the hospital by 2 weeks out, much less blown PFTs yet. So this was kind of a test run just to see where we were, and how the new lungs were responding to my cues, etc. Suffice it to say, I was beyond nervous and excited to see how I was doing. And then came the big moment...

45% FEV1.

Wow. I can hardly believe that number, and I keep going back to my PFTs to stare at it. More than that, I can't believe the beautiful arc that my flow chart showed, especially considering that my lungs still feel compressed by my scar and my chest. It was so amazing, so life affirming, to blow that number and know that these PFTs will just keep going up (God willing). Obviously life is about so much more than the numbers, but I have to admit: it feels darn good to get some good ones for once.

Then came clinic itself, and that's where things got a tiny bit more complicated.

First of all, I just want to say that my clinic is amazing. My doctors are fabulous, the coordinators were excellent, and the experience overall was very friendly and reassuring. Everyone told me I looked great, was progressing well, and was doing a good job taking care of my new lungs. My heartrate was a bit high, which tends to be an issue with me, and we are going to try some things to get a better handle on it, including an appointment with a cardiologist at Columbia. I feel better having had the conversation about that, though, so hopefully we're already on track for smoother sailing on that front.

The other issue was that my bronch last Friday showed some A1 level inflammation/rejection, so I have to go on a prednisone burst.

I thought that surely the first time I heard the word "rejection" I would freak out. I thought it would send me into a minor tailspin even though I told myself (and I have been told repeatedly) that some minor acute rejection in the first months is common. I thought that I would have to talk myself down from the ledges.

But I didn't, really.

I'm disappointed, of course. I wish there was zero inflammation issues in my beautiful new lungs. I would love to continue on my gleeful little course of no bacteria and no other problems. But as far as issues go, I also recognize this as treatable, under control, and not a huge catastrophe. I mean sure, I broke out into a sweat when I first heard, and I definitely had (and probably will continue to have) a few moments of "oh wow, really?!" But overall, I'm mostly concerned with the lack of sleep I know is coming from the prednisone taper than I am with whether this will be resolved. I feel entirely confident that I will get through this and that it is not a sign of bad things to come. Maybe it's that 45% holding me up, but I know these lungs and I were meant to be together, and I'm willing to take the bumps in the road, especially considering I have no choice.

I realized today that I have a huge amount of trust in my transplant team -- in their ability, their kindness, and their wisdom. This is huge, and makes, in my opinion, all the difference in the world. I also have an incredible support system in my family, and my mother's strength today was a huge reminder of that. She helped me calm down after the insulin debacle (I was a little stressed at that point, to put it mildly), helped me get from place to place and navigate the maze that is clinic visit #1, and helped take notes through the clinic itself. Now that we're home and watching Wimbleton on TV, she's finally get some well-deserved rest.

I guess the lesson for today is that things don't always go exactly as we plan them, even when we think it's going to be something as easy as clinic. But when the dust settles, hopefully we'll have learned something about ourselves, and maybe even about the people who help us through it all.

And if we have to lose some sleep over it all, well, at least that's another hour in the day to just be grateful.