They wept for her body and rejoiced for her soul.

Found peace in liberation and sorrow in loss.

Found solace in tradition, in hope, in remembrance.

And after awhile, they left her side. Her eyes no longer able to see their tears, but her love they carried with them, along with her memory and her joy.

I'm starting to sound like a broken record.

CF this, lung transplant that.

But, despite my best efforts, CF is becoming more prevalent in my life, and that's an adjustment I'm slowly learning how to cope with.

And I find writing to be cathartic, a method of sorting out my thoughts into a legible, comprehensible order. They rattle less in my brain, and there's more room to remember the fun stuff, like how to lip-sync to bad 80's songs (and by bad, I mean SO GOOD), and how to play Jenga.

For awhile there I felt like I lost a bit of who I was. A vital bit, personality wise. I lost my sense of humor, and life isn't a great time when there's nothing to smile about. I've been working on that. I even cracked a few (awful) jokes lately. I smile more. I feel better about myself, and about these ol' lungs of mine.

So, quasi sense of humor in tact, I had a meeting with the new pulmonologist on the team, and she introduced me to the nitty gritty of transplant life. It was fascinating, scary, daunting, and informative. I like information. I like to pretend that I have some iota of control over my life, and one way of doing that is processing and understanding what may occur in the future.

Like, you know, a humongous surgery of monstrous proportion.

No biggie.

So in having her explain the process in such depth, I felt a weight lift. A dead weight that I didn't realize I was carrying, a weight that stems from not understanding, and being afraid. From lacking the confidence to believe that I could survive something so huge.

Well, now I understand a bit more, and it's still damn scary, but it feels like something I could do. Something I could take on and handle, just like I've handled CF for many, many years.

In no way perfectly, but as a work in progress.

SO: to summarize what the Dr and I talked about, these are the highlights of pre-surgery, surgery, and post-surgery events that I may or may not one day face. I'm simply putting it here to chronicle it for my own sake, as a way to organize, at least in writing, something so huge.

1. In the past, when a patient’s lung function dropped below 30%, that was an indicator of needing to be evaluated, if not listed for organ transplantation.

2. Today, that’s less of a factor than other clinical signs, such as carbon dioxide retention and constant use of oxygen, generally in the 4-6 liter range. That’s a LOT of supplemental O2.

3. I’m fortunate to say that my body exhibits neither of those. That lifts a slight weight off my shoulders.

4. Once the evaluation tests are done (psychological, physical, in depth look at all organ systems, etc, etc) and if I deem fit to be listed, I would be given an allocation number and placed on the organ list accordingly. The old system was first come, first serve, and the new way of doing things allows patients with greater need for organs to get transplanted first.

5. As a rule, cystic fibrosis patients are young when listed, and given a fairly high allocation number compared to the elderly, say, COPD patients with a history of smoking.

6. Mass General is very specific about the lungs they choose. Apparently lungs are a tricky organ to find is top shape. Often they’re damaged in whatever accident deemed them available, or they’ve been ruined by smoking or infection.

7. Once a set of lungs is available that matches my blood type, body size, and sometimes even age is a factor, they’ll call me in and I’ll be prepped for surgery. They make incisions below the breasts on both sides, and the operation lasts for 6-7 hours, provided all goes smoothly.

8. I would be placed on a ventilator post surgery, while sedated, as the new lungs would need time to adjust to breathing on their own. There would be four chest tubes placed; two in each upper lobe, and two in each lower, to drain fluid, air, blood, etc. Those would be kept in place for two-ish weeks.

9. Once off the ventilator, and off the sedatives, though very much so still on pain medicines, anywhere from 1-7 days post surgery, I would be moved from the ICU to a general medicine floor, where I would stay for a rather extended amount of time to recover.

10. I guess it’s standard to have a hospital stay within the first six months, and the recovery for the incisions would be rather extensive - 3-6 months. Until that point, I wouldn’t be physically able to drive, exercise, do any physical activity that could strain my chest.

11. There would be a bronchoscopy at 1 month post-op, and 3 months, 6 months, 12 months, etc. That’s the doctor’s way of determining whether an infection exists, or whether our bodies are rejecting the new lungs.

12. Unfortunately I’d be on a rigid regimen of immunosuppressants to keep my body from rejecting the foreign lungs. Those can affect kidneys, blood pressure, GI tract, etc. Though, from a medical standpoint, that’s all treatable, whereas chronic rejection can be untreatable.

As I said, daunting.

I wake up some days in a state of blissful morning forgetfulness, and I feel healthy and free and then I remember, and I wonder how I'll keep dealing with this as it continues to progress.

But, in the fine words of a Miss Dory the Fish - just keep swimming.

Spring break/gettin' to know my neighborhood alligators.

I realize that at times, specifically when I’m hospitalized, I find myself longing for my ‘hospital’ life to end, and for my ‘real’ life to continue in its place.

Well…. If I’m going to be honest with myself and the internet world, I also have a hard time with acceptance, and change, and accepting change. So for my life to once again revolve around admissions is a struggle for me to adapt to, and I’m enduring an inner battle of wills - to accept my life for exactly what it is, and to be okay with exactly where I am, or to continue being frustrated with my circumstances, and caught in a tangle of anxiety and impatience.

I’d like to think that this is a good chance for me to really dig deep and identify my less attractive tendencies and work on them. But in reality, I wish life were simpler, and that improving as a human being was easier, less work, more ‘instant’ progress.

Ideally I’d wake up tomorrow and be patient; open to the idea of my health’s uncertain evolution. And I’d have perfect teeth and a nicer bum.. And I'd be sunbathing in New Zealand right now, or perhaps in the south of France...

But I’m realizing that this life is a learning life, and I’ve been handed an odd hand because some part of me is capable of not just accepting it, but thriving.

Accepting that my physical limitations may be more real some days than others, and that it’s not my fault that this disease progresses. THAT is a tough one. I tend to blame myself for my body’s inability to cure itself.

Accepting that my life is never on hold, it’s just a different life than the one I would perhaps choose for myself. That hospital life is “real” life, and the sooner I begin to accept that, the easier the experience of being a patient will be.

That acceptance doesn’t mean giving up. Surrendering to what life hands me is the hardest thing I’ve ever even thought about doing, because that would mean that I’d have to forfeit control, or what little control I’d like to think I have… and that’s terrifying. Letting go is much more difficult than holding on, although it’s also exactly what I should be doing.

Surrendering my trust to the universe. Trusting that my life is exactly as it should be, just as it is.

This, my friends, is a work in progress.

reminisce;

Somehow this little girl has grown up, and yet I wish I could go back to my childhood, and savor every moment of health, and love, and adventure.

...though being an adult isn't so bad.

gratitude;

Seventy-five milligrams of Benadryl a day.

I'm a goddamn zombie. I'm not even a zombie. I'm just sleepwalking my way through the next fourteen days. I'll do my best to be articulate, but if this ends with a run-on sentence, I'm just asleep at the keyboard.

I sat in the hallway of the interventional radiology department waiting to get a picc placed, and since I had time to think, I did, and I thought about what a strange life this is.

Not in a negative sense, or even in a positive sense, it's just an interesting life I'm leading. CF makes my life ... different and strange and difficult, and yet, good.

I've had quasi-rebellious periods, where I rejected everything CF related, and I've wanted to zap the genetic defects away with a magic wand from a fairy godmother, and while she's around, how about being a few inches taller? And maybe red hair? Red hair could be fun...

And I also realize that CF is an odd form of a blessing, and at times, it just is. It's nothing more and nothing less, it just is. I'm twenty-four, still in college, have a dog, have long fingers and long hair, can sing every song from the Sound of Music, and have cystic fibrosis. It just is.

I'm unsure what the outcome of this admission is. I'm hopeful, er, hopefully realistic. I spend hours working on improving my lung function, and yet showering can deplete me of my energy. I've had to reevaluate my physical limitations, and mentally accept that yes, I have limits. Acceptance is a process.

But can I say that I am overwhelmed with gratitude and relief for this team? They give nothing less than every ounce of support I've asked for, and oftentimes more. I'm blessed.

I'm under the weather, I worry about the future, I lead an odd life, and yet it's a beautiful life, and I'm grateful.

Simply put, I'm afraid.

Now I've been writing, and writing, and re-writing all about that fear, and how it feels, how it tastes, what it looks like, where in my mind it has taken residence, and what it is exactly that I'm afraid of.

But that's a whole lot of fear and not a lot of room for anything else.

And when I focus on my fears, I forget, sometimes, that I've had CF my entire life.

Twenty-four years of effort, and work, and hospital stays and surgeries and procedures, and complications, and I've gotten through every last bit of it.

I'm still breathing, albeit poorly, I'm still able to walk, I'm not on constant oxygen, and if I do end up on the operating table with a new set of lungs, then it will be a blessing unlike anything I've ever experienced. I'll be able to breathe.

And that's really nothing to be afraid of.

pros & cons;

A pro for a lung transplant: I could run a marathon.

A con: I'd have to actually train for said marathon.

acceptance;;

My head is a lead balloon.

That's the colistimethate sodium talking, drug one of five in my medicinal cocktail provided thoughtfully for me, patient #18561596etcetc, by the doctors at Tampa General Hospital.

It wasn't easier the second time around, like I had originally thought. I was under the impression that life altering news is easier to take after being dealt the blow once already. And, per usual, I was wrong. Wrong wrong wrong.

The transfer of care to Florida from Massachusetts has been a bureaucratic nightmare. I am covered head to toe in insurance bullshit. I've got stacks of contradictory paperwork, physicians who may or may not take my insurance, but have been assigned to me regardless, only to find out that those physicians can't or won't see me, but I can't sign up for a NEW physician for three months. But to see a specialist, I must have a new physician. Now. But really, yesterday would have been better.

It's enough to make a girl have to stop and catch her breath.

And that leads me to conundrum numero dos:

My lung function is at an all-time record low - 26%. My weight, too, is lower than ever at 99.7 lbs.

Weight loss coincides with a decrease in lung function, so, easy - gain weight, improve breathing.

To gain the weight, I need to remove my gallbladder.

To remove my gallbladder, I need to .... improve my lung function! Or face being stuck on a ventilator post surgery with lungs that can't recover from the trauma of being put under anesthesia!

It's a textbook catch-22, and I can't seem to figure out where to start. Neither can my doctors. So not only was I admitted, but they threw out the ugliest phrase I know.

Lung transplant.

I wasn't ready for it three years ago at twenty, and I wasn't ready for it yesterday, despite my belief that the second time around would be easier.

It was not.

But despite my propensity for melodramatic blog posts, I'm not convinced I'm there yet. It took a minute for my mind to adjust to the shock, and digest that mouthful yet again, but once the doctor left the room, and the tears slowed down, on turned a light bulb.

The best kind of light bulb: hope. Or maybe denial, I'm not sure...

I'm just not convinced my lungs can't recover, I'd like to believe I could survive the gallbladder surgery, and I'd really like to believe that once it's out, my weight will go up, my lung function will increase, and I'll be known as The Girl Who Avoided A Lung Transplant Twice.

Yet hope is at times contradictory with acceptance. Acceptance that my lungs are fragile, and it might be time to consider the next step in the disease process; out with the old, in with the new. But yet, acceptance is a fine line away from admitting defeat and slowly becoming okay with that. I want to accept what CF throws my way, but not give up in the process.

And then, today, another thought came to mind, one I have long forgotten. In yoga, there's the idea that the present moment is the only moment; that our minds focus on the past, or the future, on ideas, fears, past experiences, or future anxieties as a distraction to being present. So where does that put this? Do I take this hospital admission at face value? Focusing solely on improving my lung function day by day, and dealing with a transplant if and when it unfolds?

Ideally, yes. But a huge weakness of mine is being 'in the moment' and staying present. I fret, I worry, I over-analyze, I bring up past events and mull over them, I think about the future and project what will/won't happen.

Yet, I'd like to try to accept that right now, at this moment, I am not a transplant patient, I'm merely in the hospital undergoing a routine admission. I'll try to take it day by day, hour by hour if I have to, and not allow the fear of what may or may not happen cripple my mindset and overwhelm my ability to get well.

I would also like to remember that whatever does end up happening is okay. An increase in lung function, a decrease, a gallbladder removal, or a lung transplant. The goal for me isn't to live in fear of the progression of this disease, but to live with CF, presently.

....That said, I really would enjoy a full recovery and a successful surgery and an increase in appetite and weight, and for my pants to fit again, and most of all, most of all, to put the words 'lung' and 'transplant' on separate back burners, and keep them there for as long as possible.

Is it wishful thinking?
Fuck yeah.

Do I care?
Fuck no.