Wednesday, July 28, 2010

Just. Wow.

Alright, my lovely breathheads, let's see how well you've been paying attention thus far.

Life After Lung Transplant Is:

(a) Crazy
(b) Hard
(c) Immeasurably Beautiful
(d) All of the Above

Too easy? I don't think it's any secret that the answer is (d) -- life is every bit as amazing, difficult, wonderful, and, well, lifelike as it ever was. And it probably won't come as a surprise to any of my fellow CFers out there (or anyone who has ever dealt with anything real, to be honest, and who hasn't?) that sometimes having all these emotions at once can make everything seem a little . . . intense. Add to that intensity a series of independently incredible events, and it's a recipe for a couple of mind-blowing days.

Yesterday I got word that my beautiful CF friend Cystic Gal (a well-known and beloved member of the transplant/CF community) got her call. I was in the hospital for transplant clinic when the text came through to my phone, and it was definitely a "wow" kind of moment. Wow because I love this woman and want nothing more than for her to be the healthy, vibrant, beautiful soul she's meant to be. Wow because this was the first time that one of my friends has received THE call and I've been here as a post-transplant CFer -- with some understanding of what they're about to go through assuming they get beyond the dry-run stage (and, believe me, I have plenty of empathy for those who don't!). And finally wow, just wow, because transplant is always such an amazing gift of love, faith, and life on the part of the donor family, the recipient, the support team, the surgeons and the doctors, and just everyone involved. So yeah, um, wow.

And when I went to bed last night to the news that it was a "go" and knew that everyone's favorite CG would soon be breathing with beautiful new lungs, well, that was pretty cool too. She's awake now and -- I'm told -- off the vent and breathing with her lovely new lungs. Continued love and light to this remarkable young woman with a full life ahead of her.

So there was that, and it was beautiful. And so today I decided to celebrate with a bike ride with my mother along the Hudson, which was fun but the seaway was a little crowded. And that led to us packing it up after a fairly short loop and taking the pup out for a walk instead, which in turn meant that we just had to walk by some of the fun stores in our little neighborhood.

I won't go into too much detail about what happened next, out of respect for the other individuals involved and their privacy. Suffice it to say that we learned about another young woman with CF, awaiting transplant, who earned her wings way too soon this past week and is now breathing easy. Some of the similarities in our stories -- right down to the "damp run" experience -- were pretty uncanny. More than that, though, was the simple wonder of that sudden moment. Knowing how precious and fragile life can be. Remembering how many people never get second chances, no matter how deserving they are. Seeing that this woman was clearly so loved. And, of course, understanding once again how disgusting this disease is -- and how badly we need a cure. For all the beautiful souls out there.

Um, yeah, did I mention that life with new lungs can be a little intense?

Anyway, in honor of CFers everywhere with perfect new lungs or with perfect wings, and for everyone in between, I offer you the most intense self-portrait I can think of: my scars. (Note: I say "scars" because I have two of them, but only one is actually pictured here. They are relatively small (about 3 1/2-4 inches each), don't go across my sternum, and honestly are hard to capture in a full shoot across the chest, so I can't really show them both at once. In case you wondered, this is my right scar.) These are mine, but they're not much different from anyone else's -- whether physical or emotional -- who has lived with this disease.

And they are beautiful.

Sunday, July 25, 2010


One of the strangest adjustments to post-tx life so far has been the realization that I am, in some weird ways, more "fragile" than I was back when I had my nasty old CF lungs. By which I mean, of course, that I am now officially among the ranks of the seriously immuno-suppressed. In fact, due to some early bouts of mild A1 rejection (which I'm not all that concerned about right now, truth be told -- for whatever reason I seem to be able to take that particular development in stride and know that it will all eventually even out), I am actually way more immuno-suppressed than I thought I would be at this stage in the post-tx process. To put it in perspective, I was discharged at 25 mg of oral prednisone along with two other immuno-suppressant drugs. I have since been bumped back up to 1000mg (1g) of IV steroids and have upped one immuno-suppressant while switching to an entirely different (and, I'm told, slightly more effective) second drug. In other words, my immune system is (hopefully?) pretty much toast at this point. Crazy.

The ins-and-outs of basic immuno-suppression aren't actually new to me, as I'm sure is the case for many, if not most, CFers out there. I was on oral prednisone (1o mg maintenance dose, up to 60-80 mgs for bursts) for over 2 years pre-transplant, along with a few runs of high-dose IV steroids in the hospital. Which, in all honesty, isn't much of anything compared to what I'm dealing with now, but at least it gave me the sense early on that: 1) handwashing is a good thing, 2) sick people should be avoided at more or less all costs, and 3) germ-filled places like hospitals, public restroooms, and airplanes are zones of caution, to say the least. All good lessons, and frankly relatively easy guidelines to follow when you get right down to it. And I mean, who really wants to be sharing drinks and swapping spit all the time anyway? I'd really rather have my own, thanks. (No comment on the spit thing, by the way.)

Okay, so I get it. Healthy immune system = unhealthy new lungs. And because of this basic equation: sick people, bad; Purell, good. Sounds simple enough, right? I can handle that.

Only it's a little more extreme than all that makes it sound, really. With my old CF lungs I had a sense of what was a problem and what was just a run-of-the-mill annoyance. I knew when a runny nose or an increased cough was likely to turn into a full-fledged exacerbation, and I generally even knew what drugs and treatment would work best to get things back on track. I had a decent sense of the difference between a "let's stay in bed and wait this sucker out with some Gatorade" type of situation and the more extreme "holy crap I wonder how full the ER is right now?" style emergency (the latter of which thankfully didn't come up all that often).

The difference is that now I'm not sure whether I know those type of things or not. On the one hand, I seem to have (miraculously) retained some of my general anti-alarmist attitude toward minor symptoms. Contrary to what I expected, I do not freak out at the first sign of a small cough or a slightly runny nose, and I weathered a migraine the other week without calling my doctor because I was convinced that it was just that: a migraine, and not a sign of my impending doom. I told him about it the next day, of course. (Actually, I should say that I think I told him about it? Honestly, I was under sedation from a bronch at the time and for all I know I told him that my head had been attacked by little green gremlins -- although my mom insists I reported the conversation about the migraines back to her before the memory-erasing effects of the versed took hold, which is a fairly good sign. I am, however, convinced that my doctor probably thinks I'm insane due to my ridiculous tendency to stay awake and do/say strange things while on hardcore doses of sedatives. I can only hope he's not in the process of drafting some tell-all book, but then again I did go to law school.)

I'm not sure if this attitude of mine is a good thing or a bad thing, all things considered. On the one hand, I am extremely diligent about my health -- as I have been for the past couple of years. After all, there's nothing quite on par with advanced-stage CF to make you learn to listen to your body, right? I tend to feel everything, listen to the warning signals, and generally make pretty good decisions about what is and is not a big deal. I also know enough to be slightly unnerved by this new routine and all these hardcore drugs. I may not be the immuno-alarmist I thought I might become (yet?), but I am smart enough to know and admit when I'm somewhat out of my element.

On the other hand, though, I feel fine. I'm not scared of people, or parks, or restaurants (aside from the diabetes/carb paranoia, which I swear I'm working on), or even the streets of New York City. Try as I might -- and, okay, truth be told I'm not trying very hard -- I just haven't been able to convince myself that this City is a cesspool of ugly, mutant germs ready to leap out and attack my lungs/sinuses/digestive system at the first possible opportunity. True, I'm not hanging out at any daycare centers or anything, but I'm also not wearing a hazmat suit to go to the Whole Foods. I look around me (well, not literally, but you know what I mean) and I see post-transplant CFers doing all sorts of things with their immuno-compromised lungs: going to school, working, raising families, taking vacations, speaking to groups and advocating for CF/tx/patient awareness, camping and hiking, going to events with (gasp!) crowds of people. I'm not saying I'm at that point yet -- I'm still taking this one day at a time -- but the one thing that I seem to be 100% sure of even during all this madness is that I will get there. I got this transplant to enable me to live my life, after all, and I fully intend to (re-)learn how to do just that.

So okay, maybe I won't be taking up gardening or starting a new career in infectious-disease management. Maybe I do have to be a little more careful than most people when I'm out on the street or choosing what foods to eat off the restaurant menu. And maybe, just maybe, my friends might get just a little bit sick of my offering them the Purell every time we get out of a cab/enter a restaurant/touch something/open a door/re-enter the apartment. But you know what? None of those things really seem like that big a deal in the grand scheme of things and when all is said and done. And for some reason giving up compromised lungs that made every little task difficult in exchange for a compromised immune system that makes certain things slightly more complicated seems like a pretty fair trade to me. Because when it comes right down to the wire, it's the thousands of things I know that I can do now that really matter -- much more so than the few things I know I can't.

Saturday, July 24, 2010

Oh-bla-di, Oh-bla-da

Well, the past couple of weeks have been, um, shall we say intense? But largely in a good way, so it's hard to complain too much. I feel bad for not having kept up more diligently with the blog -- and was seriously touched beyond words by all your lovely messages of concern and love -- but I needed to take just a little time for myself, to watch this new world continue to unfold around me and to figure out, as well as any one ever can, I guess, my continued place in this amazing thing called life.

I will say that the learning curve on all of this new stuff -- on transplant and diabetes and new medications and just relearning my own body -- is steep, to put it mildly. So much of this is just plain new, and while new can be exciting and fun and wonderful, it can also be confusing and even (dare I write this?) downright hard. Is that okay to admit to you all? Does it cast me in the light of ungrateful patient or whiny survivor? Do I give myself away by acknowledging that even life with new lungs isn't always perfect?

The past couple weeks have seen some amazing changes, many of them nothing short of miraculous. My lung function shot up 10 points to about 56% FEV1, numbers I couldn't have even imagined for years pre-transplant. I got my staples removed and my scars are pretty much healed, freeing me up to move more, sleep in new positions, and just generally enjoy a whole new level of comfort. Everyday activities are no longer exhausting -- who would have thought the grocery store could be a fun place to be, honestly? I feel good, and my entire family is looking ahead to a time in the not-so-distant future when perhaps my mom can return to her home and her husband and her puppies, and I can return to an independent and, well, somewhat "normal" life. I'm off several of my meds now, and the hardcore CF routine is a thing of the seemingly distant past. And there are many moments -- more of them each day than I can count, really -- when I simply have to smile and reflect on how unbelievable this wonderful transformation is, and how blessed I am to have been chosen to receive this gift, not to mention this amazing level of care and support from friends, family, and doctors alike. It's way more than any one person deserves, and I try hard to never lose sight of that simple but overwhelming fact.

And yet, for all the beauty of this time, it has also been a period of extreme adjustment. My egotistical side has long prided itself on taking things -- particularly medical things -- in stride and without too much drama (although I should probably admit here that this wasn't always the case -- my teenage years were definitely marked by a certain melodramatic flair when it came to all things CF). Partially collapsed lungs, constant infections, weird port drama, hospitalizations, surgeries, struggles to gain weight, antibiotic reactions, hearing loss -- I've been there, done that, survived, and maybe even been able to laugh about it all along the way. Because after all, no one knows slightly morbid, comedy-of-errors style humor better than the professional patient, right?

So why, I wonder, is the sudden combo of a few (okay, fine, a LOT of) new pills, some extra medical appointments, a few new IVs, and (most recently) an increased load of steroids to deal with some minor acute rejection throwing me for such a loop? Is it the combination of being somehow both healthier and more fragile than I was during my hardcore CF life? Is it the shift in identity that seems to come with the move from CF patient to transplant patient? The sudden realization that I'm not at all sure what to expect from this "new" body that is both wholly myself and utterly foreign all at the same time? The always somewhat jarring change from one medical team to another, no matter how competent and lovely that new group of dedicated professionals might be? The frustration of being unable to jump headfirst back into the "healthy" life I so long imagined would magically reappear with a 6-hour surgery followed by a short and uneventful recovery period? Or maybe just the realization that things are unalterably different now, for better or for worse (or, more honestly, for better AND for worse) -- for the rest of my life. Which is, as I mentioned before, both wonderful and, quite frankly, scary as all get out.

So maybe I am a little more whiny than usual these days. Maybe I haven't been on the top of my game in terms of taking everything in stride and cutting both myself and others slack where it needs to be cut. I think in all honesty I'm trying to be something amazing, somehow trying to prove to myself and to everyone else that I was worth this miracle and that I can handle everything like some kind of smiling transplant poster child, and the truth is that I'm really not succeeding in much besides maybe driving myself even crazier than normal. So, okay, I've still got a little learning left to do. Guess I haven't reached the top of that curve yet, and to be honest I probably never will.

But the fact of the matter is I am making progress. I am, for all my flaws and my frustrations and the fact that I'm fairly certain some of the people in my life would tell you that I've lost my mind, actually doing something right. And sure, I may not be winning any awards for transplant superstar at this moment, but I guess that's not really the point anyway. Because my illness has never been the defining aspect of my life, and I'm not going to let it become so now -- hard as it is to remember sometimes.

So here's to the changes, the good and the bad, and here's to emotions from happy to sad. It's real and it's lovely, and just like the song: it is all well and good and, of course, life goes on.

Friday, July 23, 2010

An Open Letter to the World at Large

Dear World:

Thank you so much for your concern. No, really, I mean it. Thank you for calling and writing and sending love across the wires, and for just generally caring enough to stick around. And most of all, thank you for loving me enough to keep asking me how I'm doing and wanting updates on my progress. I am truly humbled by your support.

And since I seem to have trouble expressing myself these days, let me try to answer your collective question as best I can. Because one of the most difficult things in the world right now is the answer to that oh-so-deceptively complicated query: how are you, really?

Honestly, I am alive. I am living as best as I can with whatever comes my way, be that something as wonderful as increased PFT numbers or something as frustrating as steroids or diabetes. I am happy and grateful. I am scared and overwhelmed. I am delighted by the little wonders of life and angered by the setbacks. I am as much a walking contradiction within a single self as Emerson could ever have imagined; I, too, contain multitudes. I am excited for the future with my new lungs and somewhat saddened by the loss of part of my physical self. I am ready. I am still, in some ways, waiting. I am intensely human.

I am not, however, perfect. Especially right now, in this period of transition, I find small frustrations difficult to swallow (no pun intended, for those familiar with the post-transplant routine) and I am sometimes a bit of a pill myself. I am frustrating to my doctors and way more flighty than I used to be -- where the heck did my amazing memory go, anyway? I am not always happy, despite the breath that fills my body, nor am I always 100% fair, to myself or to others. These drugs and these situations play with my mood and my ability to process it all in the way I would like. I am on a burst of very high-dose steroids, and I'm living by the old adage that if you can't say something nice, you should probably just shut up. Which means I am, at this point in time, fairly quiet. You're welcome.

I wish I were better at all of this. I wish I could magically just make up my mind to be all of the good things I was before I ran headfirst into the wall of end-stage lung disease, only stronger, smarter, and more enlightened. I wish I could say that illness has somehow transformed me into a person with all the ironic wit of David Sedaris, all the righteous strength of Martin Luther King, and all the radiant peace of Mother Theresa (minus, of course, the dead part for those last two). Most of all I wish I could just make these past few years easier on everyone by becoming some sort of miracle patient and erasing all the fear and grief and uncertainty. I wish I could do all that AND save the world AND look really fantastic doing it (okay, so I'm still a little vain -- did I mention I'm human?), but instead I'm slowly coming to the understanding that I'll just have to settle for acceptance of myself, flaws and all. Someday.

Which I guess is the real answer to that overarching question, after all. How am I? Well, I'm getting there. I'm thoroughly relishing the journey along the way, even the parts I don't honestly enjoy.

And somewhere, in this whole messy, ecstatic, scary, ridiculous, melodramatic mindfuck of a miracle, is life -- or at least I'm fairly certain that's the case. And that fact, come what may, is always something worth celebrating.


Monday, July 12, 2010

Warning: CFRD(angerous) Curves Ahead

Apologies in advance to all my lovely readers, but the following message is nothing short of a full-on rant. For those of you unfamiliar with the rant-post variety of blogging, this means the below writing may contain any number of the following: complaining, whining, self-pity, anger and/or frustration, and maybe just a dash of cynical humor (if you're lucky). For those of you not into that kind of thing, I suggest you check back later -- preferably when my prednisone dose is a little bit lower. Which, fingers crossed (and for the sake of all our sanity), will probably be soon. Hopefully. Maybe.

Apparently my lovely new lungs gave me diabetes.

Well, okay, that's a little unfair. Actually, more than a little, considering the more accurate wording would be that my old body coupled with my ridiculous drug schedule gave my new lungs diabetes, but either way the end result is the same. I didn't have CFRD going into the transplant, and now, at least on 30 mg of pred, I do. Somewhere during that surgery and then the massive doses of steroids that followed, my pancreas decided to stop regulating my blood sugars and let me do all the work. Awesome. Thanks for that one, CF.

Anyway, it's not like I didn't expect this. I mean, sure, I hoped it wouldn't happen, but I've been around the medical block enough times to know the basic score, which is that a lot of CFers end up with screwy sugars after transplant, if not before. And I'm also experienced enough with serious illness to know that CFRD isn't the end of the world. A pain in the, um, behind? Yes. A world-ending crises? No. In other words, I was generally okay with the idea of trading old, infection-riddled lungs for healthy new ones and a little diabetes madness. I still am, in fact. It just seems like a fair swap to me.

Only it's not. It's not actually fair at all. It's not fair because stupid prednisone comes into the mix and makes it worlds more difficult than it needs to be. It's not fair because going to sleep a CFer on a "CF diet" and waking up an insulin-dependent diabetic is, it turns out, a little bit of a mindgame. It's not fair because learning all this stuff while you try to learn a new (intense) medication routine AND switch doctors AND recover AND all sorts of other things is HARD. It's not fair because, quite frankly, we have enough to deal with. And it's especially NOT FAIR when the diabetic clinic at your hospital can't give you an appointment until OCTOBER. Seriously, people, that is just. not. fair.

I feel like I'm playing "what is wrong with this picture" over and over every single day trying to figure this thing out. My lungs feel great, and I couldn't be more grateful for that, but this is seriously putting a damper on my ability to celebrate life post-tx the way that I know I should. Let me give you an example of what I'm dealing with.

Morning: wake up, discover sugars in the normal range, take long-acting insulin, eat bfast and take 30 mg prednisone.
Afternoon: check sugar and see that it is still in normal range, but slightly above 100 (where they want me to start taking insulin). Take short-acting insulin and eat lunch of tuna fish sandwich on whole wheat and diet drink.
Evening: discover that I am STARVING from not snacking all day. Worry about blood sugar so check it, see that it is slightly over 150 and then eat a piece of cheese. Literally, carb-free cheese and about 5 roasted, salted cashews. Start to feel incredibly tired. Check blood sugar and notice it is now 230. Correct it with dinner.

And then the kicker, realize that I'm absolutely, in no way, gaining back the weight I lost pre-transplant. You know, that weight that my doctors desperately want me to gain? Yeah, that weight.

How does that even happen?!

Honestly, I have no idea how to manage this. I'm going to ask (read: plead, demand, beg) for more guidance at my next transplant clinic appointment. I know they're trying to help me out here, but "eat what you want because you have CF" doesn't seem like workable advice in this instance, especially when I'm just on a sliding scale and have no idea how to apply that to eating in between meals.

Surprisingly, the whole giving up eating a lot of candy and sugary drinks thing hasn't been hard. That might be the easy part, especially if I can still have dessert after a protein-filled meal with some insulin. But I don't think having blood sugars in the 200s every single evening is going to fly much longer, and I have no idea how to stop it. I'm already not snacking, which just isn't helping my quest to look/act/feel healthy in the weight department.

So that's it, rant over. I know this will get better. I know it's trial and error. I know all of that, really I do.

But it's still not fair. And that's all I have to say about that.

Tuesday, July 6, 2010

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.

Sunday, July 4, 2010


So per the naming system, this blog will NOT be part of my transplant story -- at least not directly, anyway. Instead, this is just going to be about life as I'm experiencing it now, a little over 3 weeks since my surgery. It's just me, no fancy add ons.

3 weeks. 3 whole weeks, and at the same time only 3 weeks. It feels like a lifetime. It seems an eternity since that fateful dinner that ended with THE Call. Ages since they wheeled me into that OR, away from my family and on my way to new lungs. Years since I awoke to the incredible sense that it was all a very weird dream. Already these lungs felt like mine, like a natural, organic part of me, and I wasn't entirely convinced anything had changed. All of this only 3 weeks ago, on that day when I lost my lungs and, quite honestly, a part of myself. 3 weeks ago, on that day when I also gained a new life.

Maybe it seems like a lifetime ago because, in a way, it was. My life now is different than it was 3 weeks ago. My schedule is different, my meds are different, my doctor is different, and even my body is different (or changing). I went to sleep a CFer and woke up a...well, I guess a post-transplant CFer, but the CF definitely has a new meaning. I never really cough, or at least not what I would have considered coughing before all this. I have no use for many of the meds still cluttering my kitchen cupboard and fridge. I walk straight by my silent vest and oxygen machines. None of that stuff, it seems, has any relevance in my new life, expect perhaps as reminders of what was. CF artifacts, nothing more.

I have new challenges now, and plenty of them if I'm totally honest. I feel overwhelmed by all the changes, confused by the rainbow of pills in my new 4-row daily pill organizer, and somewhat dizzy from the newness of it all. I no longer wholly understand my body, and that frightens me in a way that living with CF for 28 years never really did. I am learning new words, new medications, and new ways of thinking as I try to adjust to these lungs that lived for 45 years inside another beautiful soul. I am surrounded by physical and visual reminders that I have actually done it: I have shed my CF lungs for a new skin, and that decision was permanent. I am on the other side.

I also have simple blessings in my life that I could never have imagined. My family gets to watch me heal instead of watching me grow ever worse with each passing day. I can walk downstairs to the treadmill without thinking about whether my O2 is charged up, or how I'm going to manage it if I feel a coughing fit coming on. I can start my day without 2 hours of treatments exhausting me and sapping my energy before I even get out the door. I can say to myself "this is only going to get better from here" -- and actually believe it.

I wish I could say that this has been an entirely smooth ride. I wish that I hadn't had to bump back up on my prednisone, or that I were sleeping a little bit better, or that I could casually mention that all my pain is now completely gone (it isn't). I don't know why I want so badly to be able to say all those things -- maybe because I want to sound elated and mind-numbingly grateful? -- but the truth is that recovery is hard. I have moments of intense happiness and joy, followed by random tears. And I'm trying to tell myself that this is okay, that it's fine to feel this way while my body and, to some extent, my soul is healing from this major separation from my lungs. I try hard each day to simply live, and to smile at my father's jokes, and to take joy in my puppy's antics or a good book or just a simple walk around the neighborhood. I try to push myself within reasonable limits -- walking on the treadmill and inviting people over to socialize. I try to do the quiet things I used to enjoy with my old lungs and to remember that more exciting activities are just around the corner. I try to admire my new pink fingernails and flushed cheeks. I try hard every day to simply live, and to be grateful for the sweet breath that fills my body.

But I'm just not quite all the way there yet, though I know I will be.

Last night I lay awake because of the drugs and my own mind. I lay on my bed, the music I had selected for my transplant recovery period streaming through my ipod and into myself, and I turned my head to stare out the window. What caught my eye was the same view I have stared at for nearly a full year's worth of waiting -- the same lights, same streets, same buildings. And they are all still there, right outside my window. Only now, they are waiting for me.

Peace and love, beautiful people.

Thursday, July 1, 2010

Part II: The ICU

Of all the different "stages" of transplant, the ICU is far and away the one that I remember the least. Something tells me that this is an innate defense mechanism on some level (helped along by drugs, of course) because the ICU is not, in and of itself, a particularly pleasant place to be. I mean, sure, being waited on hand and foot and getting about 20 hours of sleep daily sounds pretty nice in theory, but in actuality, but when you're lying on your back in a hospital bed without so much as the ability to properly adjust your pillows by yourself, it loses a lot of its charm. I don't say this to scare anyone, because the nurses I had were, for the most part, fabulous, and the care was excellent, but I definitely found the ICU to be at the top of my list for selective amnesia when it was all said and done.

I was in Columbia's Cardio-Thoracic ICU for 5 days in total, although they started trying to move me out sometime after day 2. Unfortunately my options for a room on the floor were limited to a private room on the transplant ward -- a designation I would later be grateful for, but which required extra patience on my part until a bed opened up matching those criteria. In the meantime, I was somewhat stranded in la-la land, as I came to refer to the ICU once I left.

La-la land earned its nickname because I honestly felt as though I were living a dream the entire time I was in the ICU. Sleep came at all times of the day and at random intervals. Visitors came and went with the permission of the nurses, and meals magically appeared at my bedside only to be taken away uneaten an hour or so later. I was generally one out of it cookie. My memories consist of a couple of nurses (I know I had the same night nurse for at least a couple days running, but the others are a bit of a blur), some visits from my amazing CF and transplant doctors that I tried hard to rally for, some time spent in a chair attempting to sit up, and many, many comforting visits from my family. Some ICUs allow 24-hour access, but Columbia's did not, and so I would often find myself alone for stretches (although "alone" seems a bit of a misnomer considering I was in a glass room with a nurse stationed directly outside my window). At any rate, I spent a lot of time napping, and the rest of the time attempting to make blurry sense of the events going on around me.

I apparently awoke directly after surgery and was awake from that point on for quite a while. My mother, father, and sister were allowed in to see me shortly after I was brought in from the OR, and their descriptions are slightly less than flattering. Apparently I was agitated from the vent and my inability to talk and communicate with the nursing staff. The major source of this agigtation, from my perspective and judging from the angry rantings I wrote to the nurses, was twofold: 1) my back was stiff and I wanted to try and find a position that relieved the pressure, and 2) I wanted the nursing staff to read out my vitals (which were positioned behind me and out of my line of vision, but I could hear the machine) whenever they came into my room. The problem, of course, was that the stiffness was difficult to relieve without an epidural, which came later, and the nurses simply had too much to do to read out the vitals every 10 seconds to an already slightly nervous patient. Unfortunately, in my drug-addled state, I had difficulty understanding any of that, which was a bit of a recipe for frustration. I expressed this by hand gestures and eye rolling, the brunt of which went to my family members -- who thankfully were able to laugh about it later (and, I suspect, during, although I certainly wasn't laughing).

Personally, I recall feeling pretty proud of my performance on the vent. In fact, I recall thinking that I was quite possibly the best ICU patient around. My random scribblings in my journal during this period reflect that attitude, as I would often preceded a rather insulting tirade with a number of pleasantries such as "sorry to complain, BUT . . . " Nice.

My other main memory of this time is that nothing that I thought would be particularly unpleasant turned out to bother me all that much. I was prepared to have to talk myself down from the ledges because of the vent, or the arterial line, or the catheter, or any number of other things, but I didn't. My memories of the vent are mostly that inflated sense of pride I mentioned, and after they pulled it I don't even recall feeling all that thirsty. I was given ice chips almost immediately, they kept my throat swabbed, and before long I was allowed to swallow jell-o and small sips of water. I do remember not liking the mouth swabs much -- they were minty and tasted somewhat unpleasant.

What did bother me was the aforementioned back pain. I am 6 feet tall and absolutely could not get comfortable in a hospital bed. As a result, I was oddly resistant to sitting, as I felt somewhat curled over. I really just wanted to get up and stretch, but I wasn't able to do so, and for some reason you don't walk in the Columbia ICU. That is reserved for the floor, so there were several days when my options were limited to bed or chair, and neither of them made me particularly happy. I did get an epidural for the time in the ICU after the first day, which helped quite a bit but not entirely. It also made my entire chest numb, which I found somewhat startling. In retrospect, I'm not sure that I would request the epidural again, though I have to admit it was a great feeling when I pushed that button.

The second thing that truly bothered me was some gas -- as in burping, don't worry. I know that stomach issues are fairly common post-transplant, but I honestly wasn't prepared to not be able to burp. This came to a head one night when I needed to release some gas but wasn't able to, and was, as a result, given a small can of ginger ale by one of the nurses. Unfortunately, whatever was causing my stomach to seize up was far beyond ginger ale as medicine, and I ended up with gas in my stomach that had to be cleared by a tube down my nose. Not. Fun. Luckily, it also didn't last too long, and I did admittedly feel quite a bit after it.

The worst experience came when I apparently had a small panic attack and was given both benedryl (for an allergic reaction to a med) and an ativan to calm me down. Not such a good combo, in case you were wondering. Over-drugging has always been a problem for me, and apparently this time was no exception. While I don't blame anyone for this mistake, per se, I can say that had I been more conscious it likely would never have happened. Unfortunately, I wasn't, and that is probably the worst thing about the ICU: I simply wasn't aware enough to be my own advocate most of the time. This did get better as the time wore on, but it never got easy.

Luckily, I had all of you to help me through it. Literally. My sister would enter my room several times a day (after she finally retrieved my ipad from where I had insisted it remain in my room despite the fact that I clearly was NOT going to use it) and immediately offer to read me comments from the blog. What I heard gave me hope, strength, and in many cases validated my experience by describing your own struggles. My family learned about some of the discomforts that I couldn't quite communicate, and as a result they knew, for example, that muscle relaxers would probably help my back pain. (As a sidenote: we did try those later, and they did indeed help out with the back issues.) I can't thank you all enough for that, as it truly did help me keep my sanity during those days.

My final day in the ICU was long and frustrating. They told me that they had a bed available, but it ended up being evening before I was transferred up to the floor. I spent the day in dizzy anticipation, hoping against hope every moment that another line would come out, or another machine would be disconnected. In gleeful anticipation, I managed to sit 2 hours in a chair with minimal complaint and eat some cereal. By this time I had lost 2 of my 4 chest tubes, but I still had one on each side requiring a drainage machine. I also had the line in my neck, a catheter, an IV in right wrist, and an arterial line in my left wrist. All of these would come out by the time I made it to floor, and my port would be accessed by a great chemo nurse so that I had an IV access ready and waiting. By the time the nurse informed my family that they should go up to the floor to wait for me, I was hugging a teddy bear and hoping that I would join them momentarily. I think I was muttering "oh, please" under my breath over and over, but I was also certain that good times were right around the corner.

I was right.

I was escorted to my room on the floor around 7 pm on Thursday 17th after being transplanted the preceding Saturday. As I mentioned before, I had a private room on a floor with skilled transplant nurses who immediately knew exactly how to get me settled. Although still in a hospital room, I suddenly found myself able to go to the bathroom (albeit lugging behind the two drainage machines with help from my parents or nurses), adjust my own headboard, wear my own pants, and control my own lighting and temperature. I even had a window to the outside world, chairs and unlimited visiting hours for my parents, friends, and family, and my own pillow and blanket on my bed. My TV came with full cable and I was able to eat the meals that arrived daily at my bedside, as well as outside food like candy, McDonalds, pizza, and snacks. And I could walk. It took about 1 hour in the ward for me to feel more like myself again, and that's when I took back over the blog (and my ipad!) and began to realize the full implications of what it meant to be "post-transplant."

But that's a story for another day.