Weighing the Issues

Dear People Who Tell Me I Can "Have Some of Your Weight":

Great! Thank you! Despite having someone else's lungs inside my body, I guess I never realized how easy it was to share body parts! I will by all means take your excess body fat off your hands (or, in some cases, off your stomach). In return, you may have your choice of any one of the following:

• My pseudomonas, because green is just SO not my color;
• My sinuses, which are full of . . . um . . . let's just call it "CF gold";
• My nose, but only because it's slightly pig-like (also, it's become quite attached to my sinuses);
• One slightly mis-matched pair of mutated genes;
• My pancreas, because I don't really use it anyway;
• My hairstyle from the 80s, which I swear is gonna make a comeback any.day.now.

Please note that all items are non-returnable once worn.

Alternatively, we could all just sign up to be organ donors and leave the body-part musical chairs game to the experts. If you like that solution better, please visit the link below and share your gifts with someone who really needs them (when you're done with them, of course):

http://donatelife.net

Either way, I know you meant well, and thanks for the offer.

Author's aside: I'm sure you all know that this post is intended in only the best of humor to make fun of the weight issues that many of us struggle with as a result of cystic fibrosis. I've long maintained that weight/body issues are actually common ground for most of us in lung disease and transplant (and probably also in life): whether you're trying to lose OR gain, this stuff is FRUSTRATING. And being on so many drugs that change our size, shape, or other aspects of our appearance (oh, hello there, prednisone!) probably doesn't help much. 

As for me, personally, I'm trying to gain. This past infection gave me a nice one-two punch to the gut (literally) and I've recently lost a few much-missed pounds. What's super annoying to me is that I've lost it despite being on a high dose of steroids, which typically helps people gain. I'm working on getting it back now by adding more small meals in the day and snacking constantly, but it's tough because, quite frankly, I already ate a lot to begin with! I'm also trying to do this without adding in 17 extra helpings of dessert each day. Prednisone + Diabetes + Extra Sugar = Comatose. And honestly, comatose just doesn't sound like very much fun to me right now. If any of you have any tips or suggestions, feel free to pass them along.

But whether you're sharing your stories, sharing your weight, or even just finally making the decision to share your organs -- happy sharing just the same, beautiful people.

xo,
Piper 

Steroids, in 7 Verses

Steroids, oh steroids,
I hate you, you suck.
If you were a curse word,
You'd probably be f*ck.

But you keep me breathing
and help me survive.
It's worth a few mood swings
To keep me alive.

So strap on your big guns
'Cause Pseudo's in town,
With his old friend Rejection,
They can't keep us down.

We'll fight through insomnia!
Fight through sugar highs!
'Till both of these monsters
Have said their goodbyes.

And when it's all over,
And my face is all round,
At least there will always
Be some beauty found

In the wisdom of doctors,
The care of our friends,
The strength of our circles,
And faith without end.

'Cause our time is coming.
You know that it's true.
Dear cystic fibrosis:
we're coming for YOU!

xo little monster,
Piper

Bright, Beautiful, and Full of Hard-Earned Life

For those of you who just finished watching NY Med, thanks. Thank you from the CF community, for being part of our never-ending awareness movement. Thank you from the transplant community for caring enough to tune in and to (hopefully) do your part by spreading the word about organ donation and the many beautiful lives it saves each year. And, of course, thank you from our small group of CF/transplantee friends (myself, Katy, Kristy, Allison, Kelley, and Jerry) for letting our amazing "cyster" Lyndsey into your lives for the past hour. I promise you that the best is yet to come from that girl.

As I mentioned in an earlier post, I don't normally like watching medical drama -- reality, fiction, or anything in between. For lack of a better way to describe it, medical stuff done to other people still gives me a pretty sever case of the heebie-jeebies. I hear doctors in Europe are working on a cure for those, but until they find one I think I'll just have to continue reading books right through "House"and "ER" and any of the many incarnations of "Grey's Anatomy." I made a good faith effort to watch the short-lived transplant (melo)drama "Three Rivers" while waiting for my lungs, but decided to quit after a woman awoke from her lung transplant in a quiet, peaceful hospital room with nary a vent nor overworked ICU nurse in sight. Something told me I wouldn't be lucky enough to emerge from my surgery with new lungs AND perfectly applied eyeshadow, so why even bother?

But NY Med is an exception to my rule, and not just because it features my hospital/doctors/nurses/friends. I actually like NY Med for an entirely different reason, and one that surprised me at first. I like it because it actually seems, well, like a hospital. It shows the controlled chaos that never seems to exist in ER, where every doctor is apparently well equipped to perform every procedure bedside and will do so at the drop of a hat as long as he gets to yell "STAT!!" at least twice. NY Med shows doctors as who they are -- people! coffee drinkers! daytime talk show hosts who got their start on Oprah! -- and patients as, well, more or less as themselves, which is to say almost exactly like the doctors. There's a lot of coffee drinking.

I had my transplant the year before NY Med began filming at Columbia. My lovely cysters Kristy and Lyndsey were both right on target with timing, though, and both of them got to savor the fun of being followed by cameras as their health slowly declined (Lyndsey received her transplant first, ending the filming). They enjoyed the cameras because the crews were sensitive, interested in learning about CF and transplant, and generally nice people who wanted to treat them like nice people. And I think that's the difference between the awareness raised by this show about CF and organ donation and, say, the episode of Grey's when a man was forced to choose between receiving a lung transplant and breaking up with his infection-ridden, scary, fellow CFer girlfriend. 1) Lyndsey's story makes sense, and 2) it made the story first and foremost about her, and only secondarily about people running around the hospital calling out dramatic commands.

Look, most of us have been in a hospital. In my case, I've even inside THAT hospital. And I think all of us can agree that it's tough, when you're in there, to get the sense that anyone has any focus on you and your life beyond the walls of hospital. It can be difficult to make heads or tails out of fact that you walk into those doors a whole and complete person, and you exit them a whole and complete person. For the time inside them, however, you become a complex system of blood, muscle, organs, veins, and nerve endings that are all different except for the two things they share: they are in you, and they need to be fixed. You become someone's job in that moment, which is a way different thing than becoming their friend or their lover or even their enemy. Because jobs are typically passive things to be acted upon and completed, and the best jobs try their hardest not to mess things up any worse than they were when you walked in here. I'm always a little worried when I meet a doctor who laughingly tells me that he used to love George Clooney on ER. I feel like I need to shake his hand and then politely remind him that I am not a prop, I do not wear makeup into surgery, and, no, nothing needs to be done "STAT!" Thank you.

So NY MED gives us the chance not only to spread awareness of diseases like CF, or of the importance of organ donation, or even of the fabulous humor of Dr. Oz. The great thing about this show is that it also offers us a chance to spread awareness of all the many wonderful patients behind these scary diseases and larger than life doctors. It gives the real world some perspective on the tricky relationships that emerge when doctors know patients as people as well as a medical mystery, and the highs and lows that come along with those decisions. I'm grateful my hospital has that, grateful that you got to watch it, and even more grateful that the wonderful soul you all got to meet tonight was my lovely friend. Lyndsey, darlin', if we ever design a patient awareness ribbon for the much-needed "Patient Appreciation Day", I think it should be colored just like you are: bright, beautiful, and full of hard-earned life.

This post is dedicated, with sincere gratitude, to the all the organ donors and their families who made this and so many other miracles possible.

On Getting Over It

Ever have one of those days when you're just kinda over it?

I'm feeling like that right now. Yesterday I (re)started IVs after 11 months off. Honestly, I really wanted to make a year. I really wanted to get my port out. I really wanted to just be done with all this infection nonsense. And yes, of course I realize that 11 months is, in a word, awesome. I can still vividly remember a time (read: last year) when I would have given pretty much anything for 11 months. So yes, in that sense, I know that griping about 11 months is silly. When I think about my friends still fighting for their lives or struggling for breath I remember that I have zero right to complain at this point in my life, skipping along as I am with my gorgeous new lungs. But, darn it, I still really wanted to hit that year mark. For whatever ridiculous, petty, selfish, and deeply human reason, that goal was important to me. So I'm a little bummed out about being back on IVs, even if I should be grateful. So sue me -- that is, if you want to risk it.

I woke up a few days ago feeling, well, lousy. I had a sore throat, and I was coughing some. Nothing terrible, mind you, just kind of . . . off. I'd been having some pesky but relatively unconcerning symptoms for a few days -- mostly just a slightly elevated heart rate and some high blood sugars, and a couple of instances where I felt breathless. Then the other night I climbed the stairs in my apartment and starting feeling breathless and wheezy. I grabbed my pulseox more out of habit than concern and popped it on my finger.

91.

Ridiculous, I thought. I haven't been below 96 or so since my transplant, even when sick, and I typically run at 100 these days. So I switched the batteries, put it back on and . . .

92.

I almost laughed out loud at that point, just because it seemed so impossible. I walked into my living room, plugged in my old monster wall pulseox that came with my O2 concentrator (the same pulseox that I haven't used in 2 full years), and stuck my finger in the monitor.

91.

And that's when I just got angry.

I did manage to get it back up about an hour or two later, after several sinus rinses and finally coughing up what looked like an old-fashioned CF mucus plug. And then the next day I put my normal skepticism aside and dutifully called my coordinator like a good little patient. I didn't tell her that I first recognized the problem while walking up the stairs after watching both "Toddlers and Tiaras" and "Here Comes Honey Boo Boo" on TLC (hey, there are some things even my transplant team doesn't need to know!), but I was pretty honest about the rest of it. The weird thing is that I don't have a fever, am not coughing heavily, and don't have a ton of other symptoms other than some yellowish mucus and a persistent sore throat (and I've lost some weight, but I tend to lose weight if I so much as look at a low fat muffin, so that's not much help). In fact, after two days on antibiotics I'm starting to feel like nothing was ever wrong in the first place.

Except for those pesky O2 sats, that is. They keep dipping and rising, apparently just for the fun of it. When I'm walking around they can go down to the low 90s, and when I'm sitting or lying down they tend to hang out around 97-98.  Other than that everything seems to be looking up, and my mucus and cough have already settled down to pretty much nothing. I'm not sure how the bronchoscopy I have scheduled for Monday is going to go. If I continue to clear things out with rinses and the cough continues to lessen, I'd guess that it won't really show anything at all, which of course is my preferred result.

I think what has me feeling "over it" right now is, more than anything, the fact that I just don't understand. I'd like to agree with my docs that this is/was a bacterial infection -- especially since I guess there has been some improvement with antibiotics -- but it sure doesn't feel like it used to when I'd have exacerbations. And I'd like to think that I'm just overreacting and it's absolutely nothing (aside from the obvious embarrassment of wasting my doc's time, which I HATE doing and is actually my number one hang-up as a patient), but then I'm not sure how to explain the dips in numbers. Here's hoping that I have some sort of weird energy field in my apartment right now that causes all pulseox machines to go crazy and spit out phony results, but I'm guessing the chances of that are kinda slim.

So for now I'm just trying to be a patient patient, and do my IVs and take my medicines, and not draw any crazy conclusions and certainly not look anything up on the internet. I'm trusting that my docs have this one covered and that I'm not just going crazy. And I'm trying to get over my own disappointment in myself for not making it a year off the super drugs because, after all, I'm still here and still breathing and I still feel relatively decent -- and at the end of the day that ought to at least count for something.

If any of you have any similar experiences you'd like to share, feel free to share them. I always strive in my head to be some sort of perfectly rational patient who KNOWS ALL THE THINGS and never over or under reacts to anything. But for right now, I have to admit, I'm feeling a little helpless and silly.

And hopefully I'll get over it soon.

Wild Horses

I realized today as I was signing a form that it's actually August already. To be perfectly honest with y'all, I'm not quite sure how that happened. Yes, I seem to remember learning something about the earth and the sun and all that mumbo jumbo sometime around elementary school, but I most certainly don't remember the teacher ever telling me that it would all go by this fast. And not to sound like a grumpy old lady or anything, but could someone slow the ride down for a minute please? I think I'd like to take a little breather.

The funny thing is that sometimes the fastest seasons also seem to be the most hectic. This summer has been crazy for me personally, in ways both wonderful and, well, um, let's just say less-than-wonderful and leave it at that, shall we? It's hard for me to reconcile the highs of the last few months (things like figuring out that I can actually RUN with these new lungs of mine) with some of the confusion, anger, sadness, and frustration of the lows. And even though I like to claim to be a big fan of positive thinking, faith, and just trusting in the moment to get me through most challenges, I have to admit that I've felt on shaky ground more than once lately. In my more secure moments I call this feeling being "in transition" or "dealing with it." In my less-so times, I might call it "going nutso bananas." Either way, it's been a wild ride.

The thing that I'm starting to realize, slowly but surely, is that I can't always control everything that happens to me. This isn't a cop out, I promise -- actually, I think it's just the opposite. My personal attitude for most of my life was that if I couldn't control it, I didn't want to mess with it. I can't help it, guys. I'm a lawyer. I like things to be orderly, I like cause and effect, and I particularly like things to make sense and seem FAIR. If it doesn't meet those pretty rigid standards, I either want it fixed, or I want it eliminated. Period. This is why I once laughed out loud when a reader of this blog sent me a note thanking me for being so "zen" about CF. My life, my health, my relationships, and my perspectives are all wonderful in their own way. Rest assured, however: that way is not "zen."

So how does my Type A, hyperactive, highly rational, not-even-close-to-zen self try to make sense of things like this past summer, or the fact that there's a rapidly approaching (though hopefully less exciting) autumn following right on its heels?

Well, to be perfectly honest: I don't know.

I don't exactly know where I'm going to go next, or how I'm planning to get there from here. I'm not 100% certain how much of the "normal" that I knew before this summer is still available to be recaptured, or even how much of it I truly want back. I'm not sure yet what of the past few months is a valuable lesson to carry with me for the rest of my (very long, very healthy, very happy) life, and how much of it I need to process, put away, and move on from as soon as possible. I don't know what equilibrium I'm striving for yet -- but I plan to have faith every single step that I can get there, even if it doesn't come naturally.

Back when I rode horses competitively I was always taught that the best horse and rider teams are partnerships. The rider retains control over the horse through a series of tools and signals, but at the end of the day if you don't recognize the strength of the animal beneath you -- moving you, carrying you, responsive to you -- then you're probably gonna fall off. At the very least, you're not gonna get as far as you'd like if you don't learn to loosen up on the reins every so often. Working together, even in a so-called "individual sport" like riding, is a crucial part of the process. Recognizing the power of what you're dealing with is a crucial part of the process. Realizing your own wisdom in guiding yourself where you want to go is a crucial part of the process. And understanding that it IS, in fact, a process is an absolutely crucial part of the process.

And so, for that matter, is learning to enjoy the ride.