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.

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.

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.

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.