2 centers: appreciating the differences

2 different CF doctors. 2 different centers. 2 different states. 2 very different approaches to treating a ridiculously inquisitive 26-year-old with advanced CF thinking hard about important issues and the future.

as i think i've discussed on here before, i see doctors at 2 different CF clinics regularly. this is a relatively new and admittedly atypical arrangement, but it seems to suit me, my family and my situation quite well. i count my blessings that the doctors collaborate happily and almost always independently come up with the same treatment plan.

my arrangement is such that my local doctor manages the vast majority of my day-to-day care and makes most of the game-time treatment decisions. i typically see him every month, more often when i'm sick. the other doctor plays more of an overseeing role. my local doctor and i consult with him by phone or email whenever new or unusual situations emerge, but i only see him for scheduled visits every 3-4 months.

at these quarterly visits, we talk about the big picture. i get to unleash the monsoon of questions i've piled up since the last visit and he makes recommendations for any treatments i'm not already doing that he thinks might benefit me. his center is a hub for CF research, so we also talk extensively about clinical trials and what's on the horizon.

what i didn't realize or intend when we established this dual physician arrangement is the exposure to a completely new and different way of doing things that would come with it. i had become so accustomed to my local CF clinic's approach to care that i wasn't even aware of how ingrained it was. i don't just mean relationships with the staff and physicians, but also familiarity with the way they do things - from patient flow and infection control policies to med list checks and pfts.

getting seen at 2 clinics can be confusing at times. for example, at one clinic, upon arrival, i must immediately put on a mask, but i sit in a crowded, crammed room in close proximity to other CF patients. in contrast, at the other clinic, the room is airy and expansive, but nobody wears masks. these differences can leave you scratching your head and second guessing what constitutes safe and effective infection control. mostly though, experiencing a different way of doing things has been eye-opening, informative and most surprising, incredibly emotionally satisfying.

i think what i appreciate most about the out-of-state clinic is that, in addition to the stringent infection control measures, i'm free to ask questions about anything. i can ask about my future or even things that don't directly pertain to me and i know i always get honest, direct, uncensored and uncushioned answers in return. i'm starting to realize just how helpful and important that is to me -- especially now.

at this point in my life, i'm on the brink of having to make some big decisions about, literally, life-or-death matters and i'm finding myself seeking information more than ever before. i want to know what to expect. i want gritty details and as much knowledge and education as possible. i want to inundate myself with information to minimize the surprises and unknown. i'm the type of person who needs to emotionally prepare in advance. the more i know beforehand, the better i can handle a big and unimaginably hard event. that is how i deal with everything, so you can imagine the impact is only amplified when making some of the biggest decisions of my life.

all of this is a long-winded way of explaining how a typically upbeat, nonfatalistic girl like me could walk away from my last out-of-state visit after a long conversation about morbid topics like transmission of particularly resistant, hard-to-treat bacteria and their impact on survival and my probable need for a lung transplant in the somewhat near future feeling, well, refreshed.

the conversation felt good for two reasons. first, as my fev1 has taken a firm holding in the mid to high thirties at baseline, the mention of transplant in my somewhat near future wasn't a shock. in fact, i've been waiting for someone to mention it and silently worrying about why nobody has. the mention of transplant for me by my doctor honestly came as a relief as crazy as that may sound.

second, as smart, accommodating, empathic, respectful and wonderful as my local doctor is, when it comes to the tough, hypothetical questions, he tends to deflect them in an effort to protect me from needlessly worrying about things that he considers unnecessary or unproductive at that time. i know his approach is well-intentioned, in fact i think it is largely subconscious and i very much appreciate his avoidance of the "scare tactic," but for me, facts are comforting.

i guess that isn't so surprising if you look at my past. i was that annoying little kid who wouldn't stop asking "why?" to everything! i'd often keep pressing even after i got an initial answer because i'd want to know more or feel dissatisfied with the simple response i got. my friends have described this quality of mine as "probing" -- lovingly, i hope. yes, my parents were godsends for embracing my curiosity and encouraging me to always keep asking questions and seeking answers, but i digress. my point is that being able to talk in the open and question difficult, charged issues allows me to get answers to the hypotheticals that swirl in my mind and leave me wondering and often fearing the worst.

so, when i decided to add another CF physician to my care team earlier this year, the one thing i didn't factor into my equation may have become the biggest benefit of all. on top of being a brilliant doctor, researcher and engineer by training, he seems to be a relentless question-asker by nature too. as such, he patiently addresses each of my questions head-on no matter how directly related, future-looking or hard-to-answer it may be and, most impressively, he encourages me to keep asking more. i dare say i think he may even appreciate or at least relate to this "probing" and inquisitive quality of mine.