Wednesday, August 14, 2013

On Seeing Things Clearly

When I was about 15 or 16, I was told I needed glasses for most distance seeing activities -- things like reading a blackboard, riding my horses, or driving a car. In the context of my daily life at that time, the decision meant that I was more or less required to wear those things any time I was awake. Not a super exciting prospect for a teenaged high school girl, let me tell you. For a little while I resisted the notion completely, but by the time I got my driver's license I had decided that convincing my parents I was capable of driving without, for example, ignoring the road signs which I couldn't really read without assistance was more important that whatever vanity propelled me to "forget" my glasses at home 90% of the time. I started carrying the darn things around with me, and even wearing them in the car, which eventually led to wearing them on my horse and, finally, in the classroom, where I was surprised to learn that blackboards had actual words on them and not just random scribble designed to confuse students like me. Life got a little easier, and I finally accepted that maybe, just maybe, wearing glasses was a better solution than stumbling around blindly, even if my vanity did have to take a little bit of a hit in the process.

Then time went on and I eventually found myself in New York City, in a place where driving was rare and blackboards were relatively uncommon. I still had my glasses, but I began to wear them less and less, and that little change made me pretty darn happy. Happy, that is, until I started coming back to Colorado on a more regular basis and realized, through a series of (ahem) let's call them "reminders" from my parents and my boyfriend, that the whole "no glasses" era was decidedly over if I ever planned to sit in front of a steering wheel or ski down a crowded ski slope again in my lifetime. I ended up purchasing a new pair of glasses -- one that I actually liked -- and this time, for some reason, it felt different. The big difference being that this time around I was old enough to recognize the value in a tool that, though it may not be something I necessarily enjoy using, helps me to participate fully in the life I choose to live and the activities I choose to fill it with. Though I may still have a bit of self-consciousness where my glasses are concerned, I am happy to wear them if it means that I can drive myself where I want to go, reach my destination, and have even more fun while I'm there. And the being safe thing? Well hey, that's just a bonus.

So what does all of this have to do with CF and lung transplant, you ask? Well, around 2006 -- when I was starting my 3L year in law school -- my CF doc decided that it was time for me to begin using oxygen at night. As with the glasses prescription, this was one tool I didn't want in my life, and I was angry that my disease was forcing me to use something as "ugly" and "annoying" as an oxygen concentrator, even if it was only at night while I was sleeping. I remember being a strange combination of angry, confused, sad, and relieved when the gigantic home concentrator machine was delivered to my apartment and wheeled carefully into my room to rest at the foot of my double bed. I remember poking it with my finger unnecessarily hard, even pushing it around a little with my foot, and sighing dramatically at the loud sounds it made when the delivery man showed me how to turn it on. I remember wondering -- as I did with the glasses -- what other people would think when they saw it, whether it would shock them, whether I should try and hide the strange little monster or whether that would make it look even more ridiculous than leaving it all out in the open. Most of all, I just remember being over it, and after a minute or two of looking and staring and wondering I simply left the machine where it was and walked out of my room. For years after that I used the O2 as prescribed at night, but I never turned it on and rarely even looked at it during daylight hours.

That is, I never did so until nighttime turned into "with exercise" and exercise turned into "with activity" and, finally, activity turned into "24/7." By then I had conquered many of my issues with the oxygen machine, of course, based largely on the fact that I knew I needed the silly beast just to live. It was actually a relief, in some ways, not to have to make decisions about it anymore. No longer could I decide, for example, not to take a walk simply in order to avoid the oxygen problem -- now I had to wear it whether I was walking or not, so I might as well just go for the stroll. But I still looked forward to getting off of the machines and the tanks altogether, and I was more than happy when that day finally arrived thanks to the miracle of modern medicine, human kindness, and organ donation.

My old portable concentrator, a Sequal Eclipse on wheels. It rolled like a 
suitcase -- perfect for a city that was mostly concrete.

And now, I've once again moved home to Colorful Colorado, where not only are there more chances to get behind the wheel, but there's also a whole lot more to deal with in terms of altitude than there was back in The City That Never Sleeps (or Drives). And, true to form, this realization initially scared me, because in the back of my mind I knew that higher altitude + lower lung function was a recipe for the thing I had long since bid a joyous goodbye: the oxygen concentrator. Yep, you guessed it, I'm back in my home state and back on the juice, at least when it comes to activity above a typical walk around town. I picked up my new Inogen One G3 portable unit today, and so far I'm very impressed with its lightweight portability, its 4 options for pulse flow settings, and its ability to fit into a backpack for easy use while exercising. But with all that said, it's still oxygen, and oxygen is always a little annoying.

Sampson Bear, looking somewhat disgruntled at being a
 point of size comparison for the new O2 machine, an Inogen One G3. 

The crazy thing though? This time around it doesn't seem quite so bad.

Kind of like the glasses, this time I was actually excited to get the new tool, because I knew that it would help me go further, be faster, and maybe even breathe some new life into these wonderful lungs through the miracle not just of modern medicine and organ sharing, but also just plain old cardio-aerobic activity. This new concentrator, I am positive, will allow me to share more and better outdoors time with my family, friends, puppy, and boyfriend, and it will allow me to stay in better shape for if and when I need to pursue a second transplant. This time around, for whatever it's worth, my primary emotion upon receiving this little helper gift was one of gratitude -- because I know I'm lucky. I know not everyone with failing lungs gets the chance to have a tool with this much promise, just like not every kid with bad eyesight gets the right pair of glasses to fix the problem.

This time around, it seems, I know where I'm heading. And crazy as the journey might be, I'm excited to get where I want to go, to reach my destination, and to have a whole lot of fun along the way.

And I can't wait to see what happens next.


  1. piper, this is an excellent post. i've been on oxygen for a couple of years with exercise and have been able to really improve my stamina and sometimes even ditch the leash! are you in pulmonary rehab as well? that really helped me!i <3 your blog sweet cyster!

  2. Piper, you are amazing . . .

  3. I can only pray Philip has the same attitude as you. We love you!!!

  4. I think my biggest problem with ever using O2 again is that I don't have the option of a 2nd tx, so it wouldn't be a means to an end on the road to possible 2nd tx, but would just mean the end... I don't know what I'll do!