This Post Brought to You by The Letter D

Vitamin D, that is. Not that I have any to spare.

So, like a Dummy I just realized that it's December and I haven't really given y'all any Details on my Disease Developments in, well, a Decidedly (in)Defensible Duration. Duh, Piper.

Okay, enough of that.

In all honesty, though, the letter D seems like an appropriate theme for what I guess is a long overdue health update. I get so excited by all the cool things going on in the CF world sometimes that I sort of forget the original purpose of this blog -- which was, I seem to remember, to share my own journey through CF and transplant and all the cool (and not-so-cool) stuff that goes right along with it. It's a journey, of course, that is far from over.

And as the CF community reels from the loss of yet more CFers (breathe easy, guys) and rejoices in the successful transplant and calls for transplant and other major and minor successes accomplished by so many of you out there, I'm reminded more and more of the value that sometimes comes simply from sharing our stories. These messy tales of hospitals and doctors and needles and pills and fears and triumphs and testing and even just of breathing are the things that bring us together and that set us apart. So with all that said, well, here goes something:

Doctors

I went to a new doctor today. I think she's an endocrinologist by trade, though she's not my endo and she seems to specialize in bone disease. All I really know is that she works at my hospital and is incredibly nice, which made it a whole lot less painful than it should have been for me to drag myself all the way up to 168th street today even though I have to go up there again tomorrow (for those counting, I live somewhere below 14th -- you do the math). I jokingly noted that the last thing I wanted for Christmas this year was another doctor, but frankly I'm okay with it as long as all doctors from now on get to be like this one. I had a little bit of an ordeal when I first arrived at the hospital, but after that (which she had nothing to do with, by the way) and the inevitable waiting, she turned out to be pleasant, easy to talk to, knowledgeable about CF, and generally worth the extra effort.

Vitamin D

She also told me what I already knew, which is that my Vit D is low. I knew that because that's why my transplant doctor referred me to her in the first place. What I didn't really know, however, was that my level is apparently 3 (or was, as of my last bloodwork) -- nor did I know that "normal range" on that is 30-75. Yeah, as in 10-25 times my level. Nice.

My understanding is that low vitamin D is linked to all sorts of nasty problems, not the least of which is rejection of the lungs. I don't want that. So needless to say we're moving forward with a couple of treatment options, such as increasing my already high supplemental dose of oral vit D. That's just more pills, so I can handle that. We're also doing some extra lab tests, including blood tests and the less pleasant urine collection test. I would say yuck right now, except that's still a preferable option to rejection and/or bone density loss. Also rickets. Urine is definitely preferable to rickets. So yeah, that's all on tap for the upcoming holiday season, along with follow-up appts and all that jazz.

I'm scheduled for an appointment at my transplant clinic tomorrow as well. Between that visit, today's adventures, blood labs tomorrow, the less pleasant test, and whatever new hoops they can think of for me to jump through, I'm pretty sure I'll survive VitaGate 2011. Here's hoping, anyway.

Demonstrations

The more exciting part of the appt came when she asked me to stand up, shut my eyes, and perform circus tricks. Well, sort of. I got to stand, shut my eyes, hop on one foot, and the like. Apparently this was to check my balance, but regardless of its possible diagnostic value it was by far the most challenged I've felt in a doctor's office for a while. And, while I thankfully remembered to point out a foot injury prior to my showstopping performance (that's its own story, believe me), I somehow failed to mention that I have minor balance issues left over from my tenure as a frequent IV drug junkie. So when she asked me to stand on one foot, I didn't think it was the right moment to make excuses, and I just decided to suck it up and stay silent. 30 years of tobra use says that's not a good idea, folks. Needless to say, I will not be quitting my day job for a career as a tightrope walker anytime soon.

Which is helpful, I guess, seeing as I have none to quit.

Donors

The best thing about today, though? Definitely the moment when I realized that Donor Bob and I have been together for exactly 1 1/2 years on the dot. Delightful. And let me be clear that coming to said realization was worth all the new doctors and low vitamin levels and weird acrobatics in the entire world. I'm so thrilled to be still living, still breathing, and still hopping (sort of) with these lungs that I sometimes feel like I could conquer the world if I had to.

Or, at the very least, the world that is mine -- Doctors, Vitamin D, Donors, and all.

Clinic Transplant

So today I had transplant clinic. It was (obviously) the first time that I've been in there since the now-infamous "damp run," so suffice it to say that we had quite a lot to talk about going in. I think everyone was looking for a little reassurance, and maybe just a little bit of an explanation. Mostly, I think we were all just looking to have a conversation -- to go in there and make a little sense of what happened and what is going to happen going forward. And that, friends, is exactly what happened.

Okay, I'm just going to throw it out there: I love my doctors.

Seriously, I love my CF doctor. I love my transplant team. I know that might sound like gushing (um, well, okay -- I know that does sound like gushing, because it is), but I really, seriously, honestly feel that I have one of the best teams out there. Which is not, I should mention, an objective statement on my part. While my hospital might be high on the national list for transplants, that's really not what I mean when I say that I love my doctors. Because let's be real here: there are good doctors everywhere, and there are bad doctors everywhere. So when I say that I love my doctors, I don't just mean that they're good at what they do (they are); I mean that they're really great doctors for me, personally.

To be perfectly frank about it all, I have to admit that I'm one of those patients who gets pretty attached to her doctors. I tend to find doctors that I like and stick to them like glue. But then again, it cuts both ways: when I don't like a clinic, I really, really don't like it. Luckily this has only happened to me once, the result was a frank refusal on my part to so much as step foot in the clinic, and it eventually led to the decision that it was better for me to travel all the way back to my old clinic several states away (as in, a four hour plane ride) than to remain in the care of a team that didn't work for me. Why? Well, simply put, because my health and my relationship with my doctor was worth it to me, and I know I'm lucky to so much as have that option. But I also have to stress one thing, in all fairness, and that is the fact that the clinic I deserted was not, in any sense, an objectively bad clinic. The nurses weren't evil, the doctor wasn't dumb, and the clinic itself was housed in one of the nicest facilities I've ever seen. It just didn't work out for me, and once I knew that, I knew there was no point in trying to resuscitate a dying relationship. And so I opted for a clinic transplant, if you'll excuse the pun. And I never looked back.

Fast forward to now, and, having moved once again and having switched clinics (successfully this time, though I'll admit not without some of my lingering doctor-dependency issues), I now find myself in a transition phase between my CF clinic and my transplant clinic. Currently my CF doctor continues to manage my care, prescribe my meds, and serve as my primary contact for whatever new issues might crop up during this pre-transplant limbo period. On the other hand, I've been seeing my transplant pulmonologist now for over almost two years (that never fails to freak me out, by the way -- how can it have been so long already?!) and I know that, post-surgery, he will be my first-stop physician on most, if not all, major issues. And sure, I'm extremely lucky in that my teams are concentrated at one hospital, allowing them easy access and communication, but I still can't help but feel a little bit of a flutter in my chest when I think about the second, unspoken transplant that's waiting in the wings right now: that ever-important move from one doctor to another.

Luckily, as I mentioned, I love my doctors. (Yes, I said doctorS, meaning both teams in their entirety.) And I know I love my doctors for several reasons that go beyond just the normal "well, they're really good and they know their stuff" type of logic:

1) No matter how sad/scared/tired/sick/upset I feel walking into that hospital, I almost always, without fail, feel BETTER walking out. No, this doesn't mean that they're magic and that they can chant a few words and make my symptoms disappear, but it does mean that they're addressing my feelings, my questions, and my concerns. They listen to me, they offer me an explanation or a treatment or a calming word, and it works. It works because, on a deeper level than just conscious thought, I trust them. And a large part of that trust comes, I believe, from knowing that they honestly want to listen to me and to make me healthy.

2) I know them. This is huge for me, and maybe it's not as big of a deal for other people, but I still think it's worth mentioning. My CF doctor referred me for transplant early. We weren't sure, at the time, exactly how early we were -- meaning that we didn't really know how fast my CF would progress from that point and so had no idea whether we were jumping the gun by a year or 10 years -- but we knew that I wasn't ready to be listed.* As a result, I not only got the testing out of the way while I was still healthy enough to deal with it and not flip my lid (yes, I believe that's the technical term), but I also got some time to get used to this scary "new doctor" presence -- to meet him and to have several appointments to get comfortable before I actually had to commit to something like, you know, getting my lungs removed. Because I personally don't feel that's a great recipe for a first date, but then again maybe that's just me.

(*Oh, and by the way, we ended up being almost exactly one year "early" on the lung transplant referral. My first appointment was May 2008, my CF doctor recommended listing in April 2009, and I was actually listed in late August 2009.)

3) I just follow my instincts. Seriously. The first time I walked onto what would later become my college campus, I knew I wanted to go there -- it just felt right. The first time I saw what would later become my puppy I knew I didn't want to keep looking -- this was my little guy. And the first time I walked into my transplant clinic I was pretty well sure that I could work with this group, and that they were going to help me get my new lungs -- it just clicked, for lack of a better word.

Sure, it made a huge difference that my CF doctor had recommended this center, because I trust her 100%. It also didn't hurt that the transplant team had a great national ranking and overall success rate, because what kind of a fool would I be not to care about those numbers at all? But, quite honestly, I had heard some bad things about the program as well, and I always knew it wasn't perfect. In the end, what made the difference for me between success and, well, "rejection" wasn't so much the numbers or the referral or anything I had read online. It was just my sense that this team and I would work well together, and that I would one day be able to type the words "I love my doctors" with complete and utter honesty.

Which, you know, is a really, really good thing. Because when all is said and done, I would go through a million "dry runs" to find the transplant (and the clinic) that works best for me.