Can I just say, that college and CF are not always a compatible pair.

I was just sent your standard issue rejection letter from a college I was very hopeful to attend. The reason? Not enough credits. Or at least, I assume it was that, as my GPA is a 4.0 and you really can't beat that.

When I graduated high school, I started an IV regimen that, at the time, was said to last anywhere from one month to twelve, and dorm room living with an IV pole is not ideal, so I enrolled in the local community college. Six months into it, the IVs stopped, and I planned to transfer. But, alas, CF struck, and I found myself in the hospital frequently that year, again putting off my dreams of a real college experience.

Roll forward to 2008, and, transfer applications sent, I was accepted to two universities that I was equally enthralled with, and ... well, I started lung transplant evaluations that year. College became lost in the paperwork, the barium swallows, the aterial blood gas studies, the xrays, catheters, blood work - the craziness that is a double lung transplant.

That fall was one of my harder times. I had a plan, and if nothing else, I like to think I have control over my life, so this plan had. to. happen. It didn't, naturally, and I was hit, full on, with the realization that I had no control over any aspect of my life, least of all the aspect I would most like to control; my health.

Having it happen again, though, in reverse, if you will, is equally devastating. Not because I begrudge the school for their decision, but because I realize that had I the proper number of credits, or any degree under my belt at all, the response would undoubtedly be quite the opposite.

I get this anxious feeling in the pit of my stomach, like I'm drowning in this town. The last time I was in the hospital, I felt as though I were going to suffocate in the bed, in those generic, hospital issued sweaty sheets, and now, this town, these walls, they're closing in on every side and it takes every effort I can muster just to breathe. To be barred the ability to finish college because of this disgusting disease that I so heartily loathe, well, it makes me hate myself.

I just want to claw it out of myself. Dig and dig and scratch through to my bones and suck out the illness.

I want to be rid of it.

Because maybe, maybe then the anxiety and panic and reality that my life is this disease, that it's all consuming, wouldn't be real.
Maybe my life would be mine, and I could breathe easy again.

May I just say, I love genuine enthusiasm.

I really love and appreciate people who are enthusiastic. It's such a great experience to hear someone talk about something that is so fascinating to them that their eyes light up and they just cannotsaywhattheyhavetosayfastenough. Phew.

This trend of 'apathy is cool' is depressing. There's nothing cool or interesting about being apathetic; it's the worst. But, wait, being depressed is like, in. Right?

WRONG!
[Disclaimer - I was never 'hip' in high school, or college, so what I consider to be 'in' may very well be 'out'. But that's just fine with me.]

Let me say this - it's AWESOME to be optimistic and excited and embarrassingly enthusiastic. The more embarrassing, the better, I always say.. [Which explains so much of my life....]

I won't go so far as to say I don't have moments, days, weeks even where I'm unbearably down about everything, times when life and lungs and boy troubles submerge me in a gigantic grumpy mood that I really struggle with. But the point is, I like being optimistic. And when I get back to that, to a point of enjoying life, is when I'm most content. And that's what I most enjoy surrounding myself with. Because there is SO MUCH GOOD in this world, and how can we only focus on the negative when the positive is beating us over our heads with every ray of sunshine and donut shop within driving distance?

With that said, I'll share a few photos in which I am unabashedly happy, which, in the grand scheme of things, is kind of what it's all about, right?

I never realized how extensive a process it is to get my life back in balance.
CF has slowly crept into every pocket of my mind and overwhelmed my world.
I woke up today and decided, with a firm affirmation, that that was not alright.

Then, with renewed spirit and morning hair, I turned on an old Feist song that had brightened my mood so many times in the past, and I ate a bowl of cereal.

Decidedly, lung diseases are best shown their place by consuming mass quantities (three bowls!!!) of Honey Bunches of Oats (with pecan bunches).

And with every mark I make in my road atlas, and every note I write to myself about what to pack for the trip, CF slowly fades into the background, a faint protest of 'Don't ignore me!' and 'Insecurity is your friend!' becoming mere squeaks of my mechanical pencil as I erase and rewrite the route of choice from Wyoming to Colorado.

This summer is a metamorphosis. I'm not a sick girl. I'm a girl on a mission to get my little blue car to the west coast and back.

No lung problems or bad attitudes allowed in this clubhouse.

a slow process;;

It's taken me awhile to get back on my feet. If I'm honest with myself, I'm still struggling, though just barely, comparatively.

For two weeks post hospital stay, I was in a daze. I would start to cry for no reason, I was constantly finding myself agitated or upset over something that normally wouldn't cause me to bat an eyelash, I was snippy and snarky and anxious.

But at the point that I was discharged, I'd had over two weeks of consistent, substantial hemoptysis [hi-mop-tuh-sis –noun: the expectoration of blood or bloody mucus] and two procedures. One, fairly routine bronchoscopy followed by a less routine pulmonary embolization, a fascinating procedure that allows interventional radiologists to enter the femoral artery in the groin and travel up and through the descending aorta into the bronchial artery to cauterize malformed, bleeding blood vessels in my lung. Technology never ceases to amaze..

That said, in the hours after the procedure, I felt, for the first time in years, that I couldn't do CF anymore. I hit an invisible, anesthesia induced wall, and as I was lying on my right side, coughing up blood YET AGAIN, a small part of me broke. I tried to control the sensation, but I couldn't see past the bed, the sweat covered pillow and blankets, the catheters, the chest pain, the blood that would. not. stop. How can I get through a lung transplant if I can't even get through this? What is the point, really? I'm never going to sit up again. I'll never stop coughing up blood. I might as well just lay here and cry.

And as a team of anesthesiologists and floor residents flooded my room, I just broke down and cried. My nurse started moving my belongings into the bathroom, and clearing out excess furniture from around my bed, and placed a new ventilator/bag at my bedside, while three doctors had me sign consent to intubate if necessary, and floor residents asked to see the cup of blood and my mom sat by my bed holding my hand as I thought to myself - I really can't do this anymore.

I was, in that moment in time, done.

It's hard to see past times like that. Once those tiny thoughts and insecurities and doubts flood your brain, they're hard to work through. Even after I was discharged, fifteen days later, I was afraid that any coughing would induce another bleed. I was afraid of sleeping, and if I rolled onto my right side I would just cry. Easy as that.

I've been home for a little over three weeks, and I'm starting to feel like myself again. I'm on the mend.. But it's a slow process, and I find myself projecting to what the next procedure may be like, down the line. Or how I'll get through the next admission, or, eventually, a lung transplant.

I also struggle with explaining this to my friends, loved ones, doctors, etc. It's easy for me to feel what I'm feeling, and understand what I'd like people to comprehend and how I'd like them to react, and offer support, but it's hard to express that. How do I say to someone, 'Sorry, you're not being as supportive as I'd like, please get your head out of your ass and help me,' without offending?

But that's a rant for another day.

The point is, the point I've been getting to, slowly, is that I'm recovering.
And that I could still use support.
CF can be so much larger than myself at times, and it takes a HELL of a lot of work to keep my life in balance..

Nearly there.
Day fourteen and I am almost a free woman.

Just in time for spring.

recovering;;

The road to recovery can feel like a long one.

After two major procedures in one day, one of which had a few complications, I'm starting to feel like myself again. Last night, however, ended with me in a fit of anesthesia induced tears, a culmination of anticipation and anxiety over a nerve-wracking procedure and my dear, fragile, blood ridden lungs.

I'm trying to process what happened without dwelling on it, for fear the fear will creep back into my mind, the fear that I'll never recover, and that my lungs won't stop bleeding, and that the rest of my life will be spent on operating tables, and in beds in a supine position, and that the quality of the remainder of my days had just dropped significantly.

So instead of focusing on that, I'm accentuating the positive.

I'm able to sit.
I'm no longer bleeding.
I'm able to stand, and walk, even if it is more of a hobble.
My lungs are taking full, deep breaths again, and I'm no longer in need of O2.
The incision site is clean, unaffected, and healing.
The sun is shining outside of my windows, I'm able to eat, sing, talk, and laugh.
Today is a much, much better day than yesterday.

For that, my lungs and I are grateful.
..as are my nurses, who had to deal with all my bitchin'.

lookin' good.
must be the shape of my head...

This waiting has me anxious.
I sat up in bed at least three times coughing up blood last night.
My body is tired, my mind is running, and my stomach is tied up in knots.

When I woke up at quarter to six to cough up (hopefully) the last bit of blood I had stored in my lung, I saw the most brilliant sunrise. The sky was a fire of reds and pinks and oranges.

Now it's gray, and drizzling, and I'm waiting to get taken downstairs for a procedure that has tied my stomach into knots for the last twenty-four hours.

Here's to hoping it will stop the bleeding.

"What a surprise to the caterpillar, when the call to be quiet, contemplative and still, results in the ability to fly."

oh, yeah;;

Since sometimes things are best expressed in a blunt, perhaps crude manner...
Tonight scared the shit out of me.

I had nearly forgotten that my lungs were diseased. I really dislike that word, disease(d), so instead, I'll refer to my lungs as being held hostage by a mutant defect living on chromosome seven.

So, yeah, I forget.

I forget the drab hospital furniture, the food trays that get placed on my bed thrice daily that I eat from while feeling sorry for myself for scarfing down prison style breakfast/lunch/dinner on my bed, by myself, with my TV for company and my IV drip on sloooow.

I forget the drug reactions, the chest pain, the nausea, the headaches, the insomnia, the goddamn, and I really mean THE GODDAMN, constant, erratic beeping of the IV pump at all. hours. of. the. night.

The overeager-to-please intern at six in the morning. The team that rounds bedside at eight. The chest physical therapy at nine. Etc, etc, etc, for fourteen days.

It blissfully floats away from my mind the second I feel that dopey high from my signature on the discharge papers.

Tonight, however, I coughed up about a pint of blood.

BOOM.

I remembered every goddamn (GODDAMN) detail.